UnconVENTional Aid: Helping Nick Dupree – Part II

I thought I would post an update to my first post, UnconVENTional Aid: Helping Nick Dupree, Social Networking Style.

Many people asked about simply evacuating Nick. Evacuating a person with a disability, isn’t as easy as evacuating an able-bodied person not attached to ventilators, and other medical equipment. In fact, the Red Cross told me, “we can help him, just get him to an evacuation center.”

Here is an explanation from Nick, as for why this is not possible for HIS unique situation:

All federal, state and local policies insist I go to the hospital. But that is the most dangerous place for me.  Hospitals’ normal assessment and care processes have been stricken with liability sclerosis: liability first, human life second. Hospital policy is they only allow hospital ventilators. Because of liability fears surrounding hospital staff operating ventilators they’ve never been trained on and the hospital does not own, the policy is non-negotiable: I’d be taken off my vent, put on a hospital vent. This almost destroyed my stoma in ‘08. I’d be toast if that happened again. So I don’t see evacuation to a hospital as an option. I wish there was a hospital I could trust to “first, do no harm,” but right now I just trust them to a) put me on a ventilator that will maim or kill me b) not have enough staff to feed or medicate me, because they have genuine emergencies on their hands. I am from Mobile, Alabama and was there until 2008; I tried to go to USA Children’s hospital when Hurricanes Georges and Opal hit the Gulf Coast and no beds or medicine were forthcoming (plus, the hospital lost *their electricity* stranding us in our wheelchairs staring at dead elevator doors for hours during Opal) which forced us to un-evacuate, go back home . Rode out Danny, Ivan, Katrina and more on batteries. I’ve been there, and some EMS guy I’ve never met yelling I need to be with TRAINED PROFESSIONALS (as my RN is standing next to me—lol) isn’t impressing me. Education on vent-dependent people is badly needed.

We are condemned as “against medical advice” for not evacuating to hospitals that were evacuated or in danger of evacuating. The story of NYU’s generator failing and all the NICU babies have to be taken off failed ventilators and bagged is horrifying, as are the stories of Bellevue, NYU Downtown evacuating. In Soviet ‘merica, hospital evacuate you. But all these horrible stories are unlikely to spark the change needed. If medical advice is to put yourself in those horror situations, I don’t mind being against it.

In addition to these the risks Nick explained with going to a hospital, there were other factors to consider as well. Like the fact that he’s on the 12th floor of a building with no power, and therefore no elevator. Of course buildings have stairs. That’s how we were bringing batteries and supplies to him. BUT the staircase was pitch black, and extremely narrow and very steep. It was hard enough for volunteers to safely carry batteries and water up 12 flights of steps. after a trip or two they were exhausted. Trying to evacuate Nick would have been an extremely difficult task and may not have been physically possible due to the staircase itself. Had we tried that option – even with EMS, Fire Dept, etc – Nick may have been seriously hurt.

It was much easier in this case (as complex as it was to coordinate) to bring batteries to provide power to Nick, then it was to bring Nick to the power.

In addition to those risks, many of the “evacuation centers” in the area were not wheelchair accessible, if we got him to one of those as the Red Cross had suggested. Portlight Strategies (a non-profit dedicated to helping people with disabilities in natural disasters) posted a few photos taken of some evacuation centers in NY on their facebook page. Here are some of the types of barriers Alejandra & Nick could have encountered by trying to evacuate:

(Top Left) This evacuation center was up a huge flight of stairs… (Bottom Left) a very steep make-shift ramp – many power wheelchairs would not be able to climb it. (Bottom Middle) A sign telling people to ask security for access assistance, except that security is inside at the top of the stairs. (Top Right) another photo of a steep plywood “ramp” (Right Middle) accessible doors  here are locked (Bottom Right) Bathrooms in these places may not be wide enough for a wheelchair to get into.

So, after Sandi Yu and I went down to Lower Manhattan the first time, to get things set up on car batteries & an inverter and found it to be a successful plan I talked to his respiratory company (who we were finally able to get the name of) and the therapists first questions were, “You’ve got the ventilator running on a longer battery, but what about the oxygen concentrator, the suction machine, and the cough assist?

Since I’m in a wheelchair, I couldn’t get up 12 flights of stairs to go SEE what needed power the night before. I knew the vent was the #1 issue for power, but these other things are also important if we wanted to keep Nick healthy/medically stable. So I put the word out that we needed additional batteries & more inverters to plug stuff into without overloading the initial set up. We wanted deep cycle marine batteries this time (Walmart had none at 2 am when we initially went) since they would work a bit better then car batteries.

I put the word out, others started spreading it using social networking, and a friend of a friend, Leanna Graham, was able to find an inverter at Radio Shack, and bike it across NY to Lower Manhattan to get it to Nick. YEAH!  Anna Jacobs was able to find us several marine batteries, and a couple 6 AMP & 10 AMP  chargers at Sears and AutoZone in Brooklyn, but getting them across the city into lower Manhattan was a challenge batteries are heavy, not the type of things you can just throw on a bike, plus the gas shortage in NYC was a big problem and HOV (High Occupancy Vehicle) was being enforced. But we were able to use donated funds to get cab fare to bring additional batteries in Thursday morning.

Thursday, November 1, Alejandra (Nick’s partner) was interviewed on NPR, Talk of the Nation sharing her experiences first-hand. You can listen to it here: Sandy Especially Tough On Vulnerable Populations

Nick  Dupree & Alejandra Ospina continued to need supplies brought in and USPS, FedEx and UPS didn’t seem to be an option, so Thursday afternoon, I started looking for more people in Boston willing to do another middle-of-the-night roadtrip. That’s when Gisela Voss stepped up. We barely knew each other – she was the designer for B. toys (sold at Target), and I “met” her on B. toys facebook page leaving “happy customer feedback” (which she was an admin of), then met briefly her in person last summer on Rabbit! band’s tour. We’ve had occasional contact with each other for the past year, became “Facebook friends” on Sunday afternoon, intended to get together next week, but found ourselves planning an emergency road trip together on Thursday.

Of course with NYCs HOV-restriction in place, we needed 3 people, so if we couldn’t find a human passenger, Gisela, being the creative person that she is,  volunteered to bring her scarecrow decor to look like additional passengers in the back seat – hahaha! – but really, it was more ideal to have 2 drivers to rotate (my license is medically suspended), and 2 people to carry up supplies since I’m in a wheelchair and couldn’t assist with that. So, she recruited her sister, Karin Bolt. I rolled around my neighborhood, on the phone with Carrie Lucas (in Colorado) collecting supplies as she told me what Alejandra was reporting was needed (paper towels, trashbags, batteries,  non-latex gloves, etc). Got all the supplies together, hopped in the car with Gisela, picked up (and officially met) her sister, and off we went.
I’ll let Gisela Voss’ tell it from her point of view:

“When in doubt, DO something.”
“When in doubt, say YES.”

With hurricane Sandy approaching we buttoned down the hatches on our Hull house and bought extra batteries for our flashlights. I never imagined where this week would take me. I got phone calls from as far away as Peru and Germany from friends and family checking on us. All OK within “my” circles. But what if I opened my vantage point a bit wider? What of the concentric circles a little further from my center? My sister’s in-laws had a tree fall thru their roof in Atlanta. All OK. My friend Lisa was cold in her house with no power. Offered our extra rooms. All OK. My friend Suwin posted photos of the destroyed Misquamicut beachfront in Westerly, RI yet those she loves OK.  A bit wider…I saw photos of New York and New Jersey and was awed by the devastation. Feeling small, not knowing how to help I went on with my day. Until….until Crystal, someone I met briefly only once, posted a plea for help on her Facebook page. A man she knew online but had never met in person was running out of batteries for his life-sustaining ventilator—in lower Manhattan, up 12 flights of stairs, 5 hours away by car.

YES.
Let’s go.

YES and DO are small words. But they achieve great things. And if in doubt, ever notice that “what the hell” is always the right decision? I could sense Luke with me, smiling that “do bigger” smile of his. He would not shy back from the long night, or the road blocks in NY, or the unknown. A friend needs help? What are you waiting for?

Who else would ride in this car with me to fulfill the HOV (High Occupancy Vehicle, an acronym I never knew before) requirement? Of course my sister Karin said SI.

With an extra 10 gallons of gas in the trunk, 4 marine batteries, medical supplies, some snacks for our ride, and Crystal’s wheelchair we drove. One last gas fuel-up in CT and we approached Manhattan. Past the toll signs HOV mandates. Driving along everything seemed kind of quiet, almost normal. Until we entered the twilight zone. Darkness in Manhattan. Unreal—an island of darkness in a sea of power. The city that never sleeps—asleep. On Broadway heading to TriBeCa the only lights were my headlights. Passing block after block after block of camouflage army vehicles lining both sides of the street, only an occasional flash of bright was visible—the diagonal reflector stripes on the armed National Guards patrolling the streets. I was ever-thankful for my car’s GPS because it was hard to even read the street signs. My atrocious sense of direction had no idea we were in Union Square until I saw my favorite NY store, ABC Carpet & Home. Still more blocks and blocks of darkness in Gotham. Did Batman ever drive his Batmobile through black New York? It was eerie and creepy, apocalyptic.

(Top Left) Manhattan in the Dark, (Bottom Left) Gisela Voss & Karin Bolt, – Gisela was a bit excited to have reached Nick’s House! (Top Right) a section of a block lit with a big generator light. (Middle Right) Driving into the darkness of Lower Manhattan. The only light we had through much of the area was our car headlights (Lower Right) The fire station near Nick where we were recharging batteries

We arrived at our destination. Easy part over.

Leaving Crystal in the car (and feeling worried-bad about her being stuck there if anything at all happened), Karin and I unloaded the supplies and only then truly felt the weight of the batteries. “Oh My God, these weigh a ton!” we kind of chortled. 12 flights ahead of us.  The doorman did not even offer to help, or hold the door as we juggled bags in. Then he smirked as he directed us towards the staircase. When we got there we saw why. This was a 3ft wide (ehem, THIN) very steep and completely pitch-black staircase. Thankfully Karin’s boy-scout boys lent us their headlamps because we needed both hands to carry the stuff. I could only handle the battery cradled on both of my arms. Huffing and puffing like the big bad wolf we slowly walked up. Step by step by step. Counting flights. 6th floor—halfway there!—9th floor—just a little more—lean on the wall on the left—lean on the wall on the right. Adjust weight. Step step step step step step step. Eureka—12th floor!

The very first words we heard made the whole trip worthwhile: “just in time!”, exclaimed Alejandra, “his battery is almost out of power.” Their nurse quickly connected the new battery, and Nick said a deep and genuine throaty “thank you” seemingly through his trach. He laid on a bed attached to machines, typing out his “Nick’s Crusade” writing. It was 3am and Alejandra was awake in her wheelchair waiting for us.  We were huffing about WALKING up the stairs? Never before have I been so immensely aware of what my body is capable of doing. And feel so humbled at the magnitude of grace and strength others have to muster just for their day-to-day living.

With newfound vigor Karin and I bounded down the stairs ready for another trip back up.

YES.

Here’s a video we took while going through there, to give you a small taste of what its like actually driving through there:

While Karin & Gisela were carrying supplies up to Nick, Alejandra & I were messaging back and forth, as she finally had stable cellphone signal, so I could explain to her what we had brought. When Gisela came back down she told me, “Nick says ‘thank you.'” Several minutes later, Nick posted his first facebook status   this week:

Yes Nick, your life IS worth saving. :)

We got back in the car, and went home, and an hour after getting home, I met with WBUR, (Boston’s NPR News Station)’s producer, Nate Goldman and explained the whole situation with helping Nick. It will air on Monday as part of the Kind World series. While I was interviewing, Gisela called into  NPR’s On Point Surviving Sandy. (at 18:48  in the recording, she shares her experience going to help Nick).

Finally, early this morning, we got the update we had all been impatiently waiting for:
Nick’s ventilator and other medical equipment can finally be plugged into the wall! No more marine & car batteries!

Nick updated at 5:30pm with this:

Power came back at 4:30am. Normalcy slowly returning. Thank you so much for the amazing support, people have been so incredible, biking across the brooklyn bridge with batteries, huffing up 12 flights of stairs with recharged ventilator batteries every 3 hours, cannibalizing cars for their batteries, even helping out directly with my hands on care. That is the story here, human kindness on a previously unimaginable scale organizing virally online divvying up Q3 battery shifts and other tasks—such an amazing example of how the web, Google docs, Facebook, can enable spontaneous order to do good works—to keep me alive and at home, not a footnote in a tragic hospital story. The best people ever coming here, keeping me going despite TriBeCa being dark and abandoned like a scene from I Am Legend or The Stand, keeping me going despite very steep and difficult stairs, keeping me going so my life and all I want to do can continue. I’m so full of gratitude, overwhelmed by this. I didn’t know I was so popular. You were all so amazing, and I’m so grateful for the upcoming help y’all will do as we go into normalcy and beyond into new things. THANK YOU THANK YOU THANK YOU Thank you thank you thank you thank you!

But of course Nick & Alejandra having power doesn’t solve “everything.” There are other issues Nick and Alejandra have to work through the next few weeks. They are still without water. Additionally, transportation is a significant issue with getting nursing staff to him for his routine care. New York City still has a gas shortage. Public transit is not running to lower Manhattan, and ConEd expects weeks for proper power to be restored to MTA and water has to be pumped out of the tunnels. The red arrow is Nick’s subway stop. There is no service at all in this area.


To keep nursing care coming to Nick, Portlight Strategies, is continuing to fund taxi costs for Nick’s nurses as he requires 24/7 skilled nursing care at home (Independent living is a far better solution, and more cost effective then the 378 days he spent institutionalized). In addition, Portlight is providing emergency assistance for others in NYC/NJ that are disabled and needing emergency assistance (Donations to Portlight also helped fund a significant portion of the battery costs to power the ventilator and medical equipment for Nick this past week). At this point, the best way you can help Nick continue getting proper medical care the next few weeks, as well as others in similar circumstances throughout New York and New Jersey at the moment is a tax-deductible donation to Portlight.

UnconVENTional Aid: Helping Nick Dupree, Social Networking Style

As you all know, being the creative type that I am, I love do it yourself projects… however, I found myself in the middle of a rather unusual project, which involved a lot of creative “thinking outside of the box” and it was more then just a do-it-yourself. It was more of a “do it ourselves” project. and we did it. successfully. Here’s the story of how we helped Nick Dupree.

Like many people, I spent Monday watching CNN. As they started showing video footage of the extent of the damage in Long Island, NYC, and New Jersey, I sat and watched as they explained the disaster, and the problems with NYC Hospital Generators. And then, CNN started showing the damage to Long Island, New York, where a lot of my family lives. Of course once you start seeing your relatives town flooding, you don’t want to turn off the TV. I hopped onto facebook to see if any of my relatives had updated. Before long, my grandfather posted that they were okay with minor house damage, as were several of my other relatives, except that my aunt had lost her home from flooding in Staten Island.

I sat there feeling helpless. I knew their power was out, so the last thing I wanted to do was start calling them to check on them, wasting their cell phone batteries. I knew other relatives would be checking in with them, so I decided to wait for second hand info from other family members. Then started checking Facebook for posts from friends in NYC & NJ.

It was then that I remembered Nick Dupree & his partner Alejandra were both in Manhattan. I’ve never met them in person, I’ve just known Nick for a few years online through disability groups and mitochondrial disease support forums. I checked Nick’s wall and saw a post from earlier in the day where Alejandra said that due to early shut down of NY Transit meant that it was impossible for any nurses to come provide care for Nick who has been dependent on a ventilator since 1993 due to a metabolic muscular disease. This was a BIG problem. As I read through wall posts, others were posting saying that Nick & Alejandra had lost power. This wasn’t good at all.

 

Nick & Alejandra’s 2010 Wedding

But what could I do? I was in Boston, 200 miles away with no drivers license (for medical reasons), and to book a wheelchair accessible greyhound to NY,  I’d need 48 hours notice. Plus, no electric also meant no elevator, so even if I could get there, I still couldn’t make it upstairs… After watching CNN and facebook posts, it didn’t seem like Manhattan would be getting power back soon… so since staying awake brainstorming wasn’t going to actually DO much, I finally decided to go to bed at 2am.

When I woke up a few hours later, there was still no electric for them. List of Nick & Alejandra’s needs were being posted by friends on their facebook walls, but many of these people were scattered around the country. One person, Leslie Freeman, had gotten to them to bring food. I didn’t know her, I just recognized her name as we had mutual facebook friends. I didn’t recognize the names of anyone else posting. I didn’t know who they were or where they were located. I didn’t know how to begin to help since I’ve never been in this type of predicament before.

I checked the news sites to see exactly what was going on. I knew Nick lived in Lower Manhattan. I looked at a NYC map to orient myself to what was reported as happening where. I didn’t know what else to do, so I posted to my facebook wall Alejandra’s last post:

Can any New Yorkers help out Nick Dupree & Alejandra Ospina??? Nick is on a vent, and they have no power in lower manhattan –

“Hello. Thanks everyone, for thinking of us. We, like many, finally lost power. Ventilator battery charging via FDNY generator going as planned but needs someone to take batteries up/down 12 flights. If anyone has any leads on portable power/charging/generator options, please advise. We have phones and feeding pump, suction machine, oxygen concentrator & wheelchair that could use power. We’ll probably need some food soon. This could go on a while, so ANY help appreciated.

(Evacuating to hospital is very risky for us & esp. Nick, won’t be considered unless all else fails, so please don’t suggest it.) –“

Immediately, my friend Sandi Yu, a local Red Cross employee responded, worried. Of course we both didn’t know what to do. I knew nothing about generators. I just hoped that someone else might know something and be able to help. And Sandi got on Twitter and started tweeting about the situation and contacted HopeMob.

I went on to package my etsy customer orders that came in during the storm, and did a post office run. When I came back, someone had suggested calling The Red Cross. I figured someone else must have done that already. I called several friends in NY or formerly from NY to see if anyone knew someone that might have a generator. no luck. I didn’t want to duplicate what others were doing since I’m sure the Red Cross was overwhelmed with calls. But I figured, what the heck, why not just try The Red Cross in case everyone is assuming someone else will do it? I called and explained that Nick was on the 12th floor of a building with no power and that he was vent dependent and that we needed to get some help to keep it charged since the batteries lasted only 3 hours and that they needed help getting someone to run up and down 12 flights of stairs to bring them to charge at the fire station across the street. Alejandra is also in a wheelchair so they really needed help. The Red Cross solution was to tell me to get Nick to an evacuation center so they could help him… uh, okay. I’m in Boston 200 miles away. in a wheelchair as well, so I can’t exactly get Nick, his ventilator and other equipment down 12 flights of stairs. So I posted again that The Red Cross couldn’t help. My friend and former neighbor, Robyn Powell (a lawyer for National Council on Disability), responded suggesting I contact FEMA.

FEMA? The only thing I knew about FEMA was from watching the weeks of TV coverage of Hurricane Katrina in 2005 when I was in rehab. I googled FEMA, found their website. but had no clue what to do. call an 800 number and explain the situation? Then Robyn messaged me a contact there in FEMAs Office of Disability Integration and Coordination. Whatever that office did, it sounded like what we needed. I sent them a quick email explaining the situation. and telling them his neighborhood, and that when I got an exact address, I’d let them know. I immediately got a response:

“Please tell Nick (who I’ve known for years) that I am sharing this with our disability integration specialists in NY for immediate assistance with our NY emergency management partners.”

Perfect, I thought. FEMA will help Nick. everything will be fine.

I figured I’d make one last effort and contact the Muscular Dystrophy Association in NY as Nick’s diagnosis falls under their diseases. Their lines were down. So, I called my local branch. They said they’d call NY branches to see if I could get help. So while I was back and forth via e-mail with FEMA and contacting United Mitochondrial Disease Foundation (UMDF) – another organization that helps patients with the diagnosis Nick & I both have, MDA was contacting NY state branches to see if they could help. They called me back looking for an address.  That was one thing I hadn’t yet gotten. I called back UMDF to see if he was in their database. He was not. So I went back to his facebook wall in search of people that knew exactly where he lived. Within minutes, Len Burns e-mailed me Nick’s address, and shortly after, Todd Hermon from MDA’s Albany Chapter called me looking to see how they could help. I explained his needs for distilled water, power for his medical equipment and they got started trying to locate a generator for him.

In the meantime, other facebook friends put together & started distributing a note, PLEASE CIRCULATE WIDELY in NYC – need help during the blackout, and put together a Google Document, Giving Nick and Alejandra a Hand to help coordinate items they needed as well as nursing care, volunteers to run up and down 12 flights of stairs as batteries died to go recharge them. It gave volunteers in NYC area a good starting point for what types of help they needed. And then everyone knew who was working on what – even though many of us had no clue who each other was.

I watched the list, kept FEMA & MDA up to date with emails as for what the needs were. MDA started to look for help with the skilled nursing aspect while others kept posting & tweeting to recruit help from others in NY.

But one of the most difficult aspects was, not only do Nick & Alejandra have no power, they also have no landline and very poor cellphone reception in the house. Of course this (plus dead cell phone batteries) made it rather difficult to find out their exact needs in a timely manner as Alejandra can’t get out of the house for better reception either. :(

I still didn’t know much about generators. And I had an errand to run. So I left the house and sat on the train googling for more info on generators, and keeping up with communication between those gathering info and FEMA & MDA. I stopped at Home Depot to find out more about generators. but all they had was gas powered ones. That wasn’t as safe option in a NY high rise unless there was a patio… but just as I was about to google maps a street view to see if his apartment building had patios where a generator could run from, my cellphone died. AHHHH!!!

So I had plenty of time to think think think on the train. Then I remembered – I had read an article last week on the CDC website, which mentioned, “Keep a charged car battery at home. It can power electric wheelchairs and other motorized medical equipment if there is an electricity outage.” Plan B?!?

I got to an outlet, charged my phone long enough to post to FB to see if it was possible to run the vent this way – off a car battery. it would rid the gas issue we would face with a generator. Of course my phone promptly died again. naturally.

But on the way home was an Auto Zone, so I stopped in there to ask about my latest plot. The employees looked at me like I had 4 heads with the idea. But standing at the checkout was an employee of a medical supply company. YAY! So he started questioning the vent model and who the supplier was – as they should be helping in these predicaments. But of course we were back to the  issue  of no phone access to just call Nick and Alejandra.

I went home and contacted MDA again telling them we might know our options better if we can find out the vent model. So Todd from MDA started contacting medical supply companies to see if any of them provided Nick’s care so we can find out what his Ventilator Model was or to see if they could help with emergency power options.

In the meantime, 2 others friends who use vents as a result of muscular dystrophy, Carrie Lucas and Stacy Carlson (and her husband Doug) & started discussing on my post ways to rig a vent with a car battery in these types of situations.  We just needed to know the exact model of the vent as well as the setup to see if this plan would work.

It occurred to me that NYFD was charging the batteries, so if we could find out further details on the type of battery/a brand on the battery or if the batteries had stickers on them for which medical supply company he uses, then we can make sure this plan will work… I just had to get a hold of that fire department. easy, right?

I had Nick’s address, so I started looking on Google Maps for the closest fire station but I was getting incorrect info. after searching unsuccessfully, I asked my friends firefighter husband, Dave LeBlanc for help finding the closest station while I looked into the cost of what Carrie, Stacy & Doug were talking about. Dave found me the station name & phone number  and I called immediately. Only to realize that the fire department’s phone lines were also down… so he suggested Twitter. Sandi Yu immediately tweeted NYFD to see if we could get further info, but we had no luck.

Of course we had a total :::facepalm::: moment when after working so hard to figure out the fire dept, I realized this was Nicks FB profile picture captioned “Visiting Ladder 1 across the street. October 10th — at Engine 7/ Ladder 1 FDNY.” LOL,  the answer to that one right hidden  in plain site, right in his profile picture caption. oops!

Fortunately, another friend of Nick’s was able to find out the type of ventilator he had. My husband happens to be an electrical engineer, so he called the manufacturer to run Carrie & Stacy’s suggestions by them. It seemed to be a feasible option. only we needed money and it was going to be a good $250+ for the set up. Sandi told HopeMob our plan and asked if they could at least try and get car batteries to his house before we got there with a power inverter.

Since it was after 5, and we hadn’t heard from FEMA in hours, Sandi Yu and I decided it was time to take things into our own hands. The car battery + inverter idea seemed ideal. We had no money for it though. But if we sat around home trying to figure out the money, we’d be losing time. Additionally, we knew supplies like this would be scarce in NYC if we sent someone else to get them there. The easiest way to get what we needed would be to bring them from out of state. So Sandi came to get me, we figured we had a good 4-5 hours of driving time to finalize a plan to power the vent, and hopefully we’d figure out the finances for it.

I emailed FEMA again, telling them we were on our way to road trip there to see if there was any sort of funding source, and I posted my paypal address on my FB status in case anyone had $5 or $10 to spare so we had some money to put toward supplies. So we got on the road… a few minutes later we got a $15 donation. followed by $10 donation. followed by a $50 donation. We were psyched. We had $75 plus the $50 total we had between the two of us. We had no clue what that could get us, but we kept driving, and people kept donating. Then we got a $300 donation. Then one of my fabric suppliers for my etsy shop sent us a donation AND reposted our need for funds, and several of her customers donated.

As Sandi drove, Carrie Lucas  called to help sort through the details of Nicks vent setup. she was able to get a hold of one of his nurses with more details, while Len Burns called and texted to give us lists of things they needed as donations increased.

By mid-Connecticut, we had about $600 in donations for Nick & Alejandra. It was midnight, so we needed a 24 hour Walmart. again, I posted to Facebook telling people my location and asking for help since the Walmart mobile page was hard to search. Within minutes, Carmen Wilson had found us the closest Walmart. YAY!

We drove 11 miles to get there and went in and grabbed carts to fill… by then it was after 1am. We had a list of needs, and ran through walmart tossing everything into carts. The employees were like o.O probably assuming we were some halloween prank seeing as the storm was technically over in CT. We were devastated when we got to the auto dept to find out that the power inverter we needed was out-of-stock. But then, Len Burns texted telling us that Sandi’s HopeMob connections had been able to locate one and an auto battery and had already delivered it!!! YEAH! because we were on the verge of hitting up truck stops all over the place in search of one. While we were shopping in Walmart we got another $150 in donations, so we were able to buy 2 more car batteries, a battery charger for them, the list from Nick and Alejandra (except flashlights), and then started getting supplies like bleach wipes, baby wipes, and hand sanitizer to help keep the germs down while they are without water. We bought Walmart out of distilled water (for Nicks vent) as well, packed up the car, and got into Lower Manhattan at 4:30am.

The whole area was out of power. It looked like a scene from a movie. no street lamps. no traffic lights. nothing. except for the occasional place with a generator, or the lights from the crews working to pump water out of the tunnels, it was pitch black. We quickly found Nick’s neighborhood.

We had our hopes up that the fire department would be willing to help carry supplies up stairs. we had 14 gallons of water, heavy car batteries, and tons of other stuff that needed to be brought up 12 flights of stairs.. Of course, since I’m in a wheelchair, I couldn’t assist her. But the Fire Department refused to help – even though they were right across the street. :( So poor Sandi had to run up 12 flights of stairs with car batteries and water to go get help from the people assisting Nick and Alejandra. The door man allowed them to put stuff downstairs until they could get friends to help carry things upstairs.

Sandi got everything situated, and when we left, Nick was successfully running his vent off a car battery – which will last approx 12 hours rather then the 3 hours the vent batteries last. We also left them with $100 cash so they have money for items needed if they have locals to go on errands – as ATM machines are also down in the area. You also have to remember, it’s the end of the month for people on Social Security – so many people with disabilities are scraping dimes together at the end of the month. :/

We got back on the road and headed back to Boston by 5:15 am. of course getting out of Manhattan was a bit tricky in the dark. We were using cellphone GPS. the signal was bad. it was dark and street signs were very difficult to read, and on top of it, GPS wanted to keep sending us down into the tunnels… totally not ideal!!! YIKES! We finally got back on the road though and reached Massachusetts by 10am – so Sandi was only 2 hours late for work!

I had contact with Nick’s respiratory company this morning & explained the set-up we have. apparently he also has a cough assist machine and an oxygen concentrator and feeding pump in need of power. We received more $$$ in donations today, so we are trying to find someone who can get some marine batteries, another power inverter and battery chargers to them to assist with powering multiple items. If you can help, please let me know ASAP!

But together, EVERYONE made this happen!
I’m amazed at the amount of teamwork that has occurred in trying to get Nick & Alejandra help. Strangers all working together to help make a plan to get supplies in to get equipment working. people donating to help fund supplies. people keeping an eye on facebook to jump in and help find info fast so we could work through barriers like minimal phone service & contact with Alejandra, people sharing any info they knew about Nick’s equipment set up so we can power it. It’s AMAZING.

I emailed FEMA this morning to let them know WE had taken care of it together. Nick has temporary a power source because dozens of people worked together through social networking to make that happen. Nick & Alejandra have a team of volunteers because while some of us focused on access to a power source, others focused on volunteer assistance. Complete strangers are helping get supplies up to him. It’s amazing.

When I asked for paypal donations, last night, I had my fingers crossed for $200-300 to try and get the basics for Nick. I didn’t expect the amazing response we got. We’re not sure how long Nick will be out of power, but from now on, Portlight Strategies is an non-profit who is stepping up to help Nick and other people with disabilities affected by Hurricane Sandy as well as other natural disasters! You can donate directly to them to help assist with medical needs of the disabled in natural disasters!

NOTE: if you are a paypal user without a paypal debit card, I HIGHLY recommend taking a few minutes to request one. You never know when you could find yourself in an emergency situation and could use one. While I was shopping in Walmart, people were sending donations, and it was on my card immediately so we could use the funds then and there to get Nick & Alejandra exactly what they needed.

– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –

NOV 1 UPDATE: Here is more information about who we all are. Many of us didn’t even know each other until after Hurricane Sandy.  Here’s more about who we are:

About Nick Dupree -I’m a 30 year-old disability rights and long-term care reform advocate, writer, seeker, helpmate, and just a guy now trying to explore the Big City.

I grew up in and around the Spring Hill College campus in Mobile, Alabama, where I studied from Fall 1998 when I entered at age 16, until 2005. I made a major impact with my two-year campaign to change Medicaid in Alabama, dubbed “Nick’s Crusade.”

For more about me, see my Wikipedia user profile.

Since August 28, 2008, I’ve lived in New York City with my partner – first in a city rehabilitation hospital (for 378 days), and later, at home in our community.

I am looking to attain success and happiness, to complete my college degree, and to find work helping others.

Where will I end up? Who will I meet? What will I learn and what new conclusions will I draw? Stay tuned to my blog to find out.

I have returned to creating comics. For more on my comics, check out What I’ve Been Up To—Comic-ing! Bunnies in Space! (bio borrowed from his blog)


About Alejandra Ospina - Somewhere near 30, New Yorker. Blogged before it was cool, now I can’t keep up. You may have seen me around town, or around the web.

Semi-active in local activism/advocacy-oriented work, as well as online. Sometime translator, interpreter, freelancer, singer. Long ago, a performer in children’s theater. Aunt. Partner. I know stuff about stuff, or I’m good at pretending.

Some affiliations: the GimpGirl Community, the DISLABELED Film Series, the Largest Minority Radio Show, the Disability Caucus of Occupy Wall Street, and sometimes, the Peace of Heart Choir.
I was once an active MOOer. Were you?
- (bio borrowed from her blog)


About Leslie Freeman:

I’m Leslie, part of Nick & Aleja’s local, activist cripfamily. I was “first on the scene” at their house on Tuesday morning, with food & other supplies. I’ve continued to help coordinate nursing, as well as responses to attempts at forced evacuation. I bring food daily, hang out, & try to assist in care.

Meanwhile, my own home in Coney Island has been devastated by floods, & other cripfam are supplying me with shelter & nourishment.

I’m an artist and mama of two.
My kids are fortunately with their dad in Montreal.

About Crystal Evans-Pradhan - I’m Crystal from South Shore, MA (just below Boston). I’m a work-at-home mom (to Sophie who is 2), Tupperware Consultant, and I own Little Free Radical on Etsy. This is my blog – typically used for DIY ideas, though occasionally my DIY projects become a bit extreme, like this one, (or the time I tried to get 1000 Origami Cranes and ended up with 5x that). And sometimes I do crazy things, like impulsively hop in a car for a road trip to “fix” a problem with no cash, and Sandi, who I had just met a month before at a mitochondrial disease walk.

I met Alejandra back on Gimp Girls group on Myspace (back when myspace was cool), and Nick in a group for people with mitochondrial disease, though we’ve never met in person – not even when we dropped off all the supplies – since I’m in a wheelchair and couldn’t quit roll up 12 flights of stairs. Someday we WILL finally meet! :)

I’m married to Tapas, an electrical engineer who could provide further tech support once we were on the road, to make sure our shopping list for our car battery hack would work with Nicks Ventilator. :)

About Sandi Yu - Sandi has a huge heart and a passion for helping both people and animals. Sandi goes the extra mile to help because it’s the decent thing to do. Sandi was just laid off from her job as a Donor Recruitment Coordinator for the Red Cross and is looking for a new career path that lets her help people. Sandi recently organized that Leslie Cora Williams Memorial Fund.

About Carrie Lucas – Carrie Ann Lucas is the Center for Rights of Parents with Disabilities executive director and only staff attorney.

Ms. Lucas is a nationally recognized advocate for people with disabilities, was lead plaintiff in an epic seven-and-a-half year suit against Kmart that resulted in the most far-reaching accessibility class-action settlement in history before founding the Center for the Rights of Parents with Disabilities.

As a single adoptive parent to four children, Ms. Lucas is passionate for the rights of parents who have disabilities.  Ms. Lucas, who has a form of muscular dystrophy, has an intimate understanding of the unique challenges that disabled parents face.  All four of her children also have various disabilities themselves, and as a result, Ms. Lucas is an expert at navigating various systems to provide appropriate community services.

Ms. Lucas is a graduate of the University of Denver, Sturm College of Law where she was a Chancellor’s Scholar.  She also has a Masters of Divinity degree with a concentration in Justice and Peace Studies from the Iliff School of Theology in Denver.  Ms. Lucas earned her undergraduate degree from Whitworth College in Spokane, Washington.

Ms. Lucas has been a recipient of an Equal Justice Works fellowship and a Petra Foundation fellowship.  Prior to becoming the Center’s executive director, she worked at the Colorado Cross-Disability Coalition for over twelve years.

About Len Burns - (bio coming soon)

About Stacy Carlson – Stacy is a pastors wife, a homeschooling mom to Sarah located in NH, and sells Usborne children’s books.

Crystal “met” Stacy through a contact at the Muscular Dystrophy Association in 2010. Stacy is also living with neuromuscular disease, and uses a wheelchair and a ventilator.

Stacy and her husband, Doug, were able to help us out with emergency set-up suggestions for Nick’s Ventilator from their personal experience.

Liz HenryAbout Liz Henry –  I’m Liz Henry, I’m a mom and wheelchair user living in San Francisco, and work as a web producer for BlogHer. I met Aleja online through GimpGirl years ago. I got to know Nick as well; we chat often about space exploration, writing, and comics. We have mutual friends like Jen Cole and Ron Sidell. We met in person in New York finally! Both at the BlogHer conference and then over Thanksgiving while I was in town for the Committee to Protect Journalists fundraiser.

On Monday I was asking Aleja and Nick if they had anyone with them.
Akemi had come over to stay with them through the hurricane but they did not expect at all to lose power and water. I was on vacation in Mexico.
My electric mobility scooter had broken, so I had limited ability to go places and was spending a lot of time online following the news and writing to friends. From my work during and after Hurricane Katrina I know how fast situations can deteriorate and how important logistics are. Simply having people on the spot is amazingly useful. Once they are there, they can see what needs doing. I offered to reach out on my social networks to see if anyone near them might be able to come over and help out. At that point I began to realize the complexity of what support they might need and all the pressures against asking for help.

Personally, I have a ton of support and resources, yet it only takes a little change in my circumstances to unbalance the whole house of cards. When my needs change, or become more visible, other people sometimes then begin to treat me like I’ve crossed a line into complete loss of control of what happens. I didn’t want that to happen to Nick, as it so often does, and for him with life threatening consequences. And for Aleja who I love dearly I could picture how outsiders would not be able to see the level of work she does and how necessary it is. We value our independence, including our ability to plan and ask for help. But for me personally that comes with a confusing mix of pride and shame, fear and anger, for the times things don’t go as I had planned. I struggle with
it. People are very, very disrespectful and I don’t like to be dehumanized. For Nick and Aleja crossing that line could mean someone would try to force Nick to evacuate without real infrastructure in place to support them and his health care, and his breathing. Being evac-ed could kill him, but even if it didn’t, would it result in some bureaucrat or social worker deciding he should be incarcerated — forced into an institution?  Would it disrupt their lives to the point where they wouldn’t be able to come home together? When I’m casually dehumanized I lose a little dignity and I get mad. When Nick is, his life is on the line. William Peace describes very well in his blog Bad Cripple

So I worried that I was pressuring her and Nick to consent to my sending in some stranger (though a friend of a friend) into their home whether to help with personal care or just to bring them food and water or try and find a way to get power to Nick’s breathing equipment. As soon as they said it was okay, I put out a call.  It propagated quickly. Suddenly thousands of people were twittering to me or messaging me on Facebook. Three out of the thousands were able to offer practical help,
and they joined what was quickly organizing to be a team effort. I was glued to my computer talking with people, gathering information from many sources and redistributing it to others, trying to spare Alejandra’s and others’ limited cell phone batteries. Len Burns became my point of contact with Aleja. They needed sterile water, rides for their nursing/PCA staff because the subway was not running, cash for all sorts of things, drinking water, batteries for flashlights, and many more things that had to be brought up and down 12 flights of stairs.  I also started doing research on legal issues for Len Burns, to see what options existed for protecting Nick against other people’s non-helpful 911 calls on him, and discussed battery tech and power inverters with other people active in the efforts.  At some point I Facebook-friended Leslie and then Crystal and others working to help; I could see their comments on Aleja and Nick’s and Len’s posts. Now I’m happy to know them and can tell we have a lot in common — our willingness to jump into a situation and improvise, for one!
My main usefulness, probably, has been to bring attention to this. People pay attention to my thoughts on this because of my history of public speaking, and blogging; my involvement with hackerspaces, DIY technology, and activism; and because I did some useful on-the-spot work for Hurricane Katrina relief.  I also was able to donate money directly to Crystal and to Portlight. Big organizations like FEMA and the Red Cross do useful work, but usually not at this stage of chaos. A week and a half from now they’ll be in charge whether they’re effective or not, but right now it’s anarchy, so we have a chance to be the most useful with direct action.

Click Here for Part 2

Products to Benefit Mootha Lab for Mitochondrial Research + GIVEAWAY and Awareness Freebies!

It’s that time of year again! Mitochondrial Disease Awareness Week  starts tomorrow! I’ve been busy re-stocking my etsy shop with awareness products!

I’ve often been asked, Which Mitochondrial Disease organization do you support?” as though I have to “choose one.” There are multiple non-profit organizations out there which help mito patients such as MitoAction, UMDF, Muscular Dystrophy Association (MDA), Foundation for Mitochondrial Medicine,  and Cure Mito, to name a few! They all serve a different purpose in the mito community, and even various mitochondrial researchers are focused on different areas of research.

Last year, I donated a portion of the proceeds to  – MitoAction (Mitochondrial Disease Action Committee), a Boston-based non-profit whose  is to improve quality of life for all who are affected by mitochondrial disorders through support, education and advocacy initiatives. I ended up raising $328 last year through the sale of Little Free Radical’s awareness products!

Once again this year, I have DNA Headbands available (in 4 sizes – baby, toddler, child and adult), and we added 2 new color options for the flowers – pink or blue in addition to the green!



I also still have my Mitochondria: The Missing Piece Awareness Pin for Mitochondrial Disease:

It comes in a cellophane bag, pinned to a sage colored card with the following explanation:

FRONT: The green on this ribbon represents energy, and the puzzle piece in the center represents the mitochondria. The role of mitochondria play a key role in many diseases!

BACK: For 2 million people living with mitochondrial disease, it’s the piece to the puzzle that explains the connection between a variety of seemingly unrelated symptoms affecting multiple organs – an underlying defect in mitochondrial metabolism.

Studies have shown underlying mitochondrial dysfunction to also be a piece to the puzzle for up to 20% of individuals with autism. Mitochondrial dysfunction also plays a role in several neurodegenerative diseases including Alzheimer’s, Parkinson’s, Huntington’s, and Lou Gehrigs disease (ALS), as well as diabetes, some types of cancer, heart disease, blindness, deafness, strokes and are also involved in the aging process!

Funding mitochondrial research not only benefits people living with mitochondrial disease, but may also help with treatments and a cure for more then 50 million Americans living with diseases in which mitochondrial dysfunction is involved.

For more info on Mitochondrial Disease, visit mitoaction.org

For 2012, I decided to donate a portion of our proceeds directly to mitochondrial disease research! I’ve chosen to support Mootha Lab for Mitochondrial Medicine Research!

Dr. Vamsi Mootha is an Indian-American physician-scientist and computational biologist. He is currently a Professor of Systems Biology and of Medicine at Harvard Medical School as well as a researcher in Mitochondrial Medicine at the Department of Molecular Biology and Center for Human Genetic Research at Massachusetts General Hospital and also has his own lab, Mootha Laboratory at Broad Institute of MIT and Harvard.

His research group is a team of clinicians, computer scientists, and biologists working together on  mitochondrial research and how problems within the mitochondria can result in human disease.

Some of Dr. Mootha’s accomplishments include:

Not only is he a researcher, but he’s also an amazing advocate for patients with Mitochondrial Disease. He has been actively involved with two mitochondrial disease organizations, MitoAction and The United Mitochondrial Disease Foundation. Here he is speaking at the Massachusetts State House to legislators about Mitochondrial Disease.

Next week, during Mitochondrial Disease Awareness Week, Dr. Mootha will be in Washington DC  speaking at the Congressional Mitochondrial Disease Caucus  at a briefing entitled “Mitochondria 101 – How Something So Small is So Important to Human Life.” I think it’s fantastic that we have a researcher  in Mitochondrial Medicine, who is willing to leave the lab to spend time educating families, medical school students, and even legislators about Mitochondrial Diseases and the role mitochondria play in other human diseases too.

If you want to know more about Dr. Vamsi Mootha  and his research, here are a few more articles:

If you’re interested in directly donating to Dr. Vamsi Mootha’s research, you can donate here by clicking “Mitochondrial Disease Research – Mootha Lab.”

- – – – – – – – - – – – – – – – - – – – – – – – - – – – – – – – - – – – – – – –

What would Mitochondrial Disease Awareness Week be without a fun DIY project from Little Free Radical?

 In celebration, I thought I’d make FREE  DIY Flag Printables so you can help spread awareness in your community!

I thought these would be a fun DIY idea and an easy way to spread mitochondrial disease awareness in the workplace, at school, in your neighborhood, or even having a party to honor or remember someone in your life affected by mitochondrial disease.  Here are some ideas for use:

  • Print some out and put them on pencils for your child to pass out to classmates!
  • Or put them on pens and share them with your coworkers!
  • Bake some cupcakes and use them as cupcake toppers!
  • Get some straws (we also sell retro paper stripey straws in our etsy shop!) and put them on top for a party or the break room at work!
  • Make a cheese, veggie or fruit platter and use them as toppers!
  • Host a fundraiser to help support your favorite Mitochondrial Disease organization or researcher!
  • Or come up with an idea of your own!!!

 

I made 5 different designs – you’ll get them all on one sheet! You’ll see tiny mitochondria on the backgrounds too! :)

FRONT: 2 Million Americans are living with various forms of mitochondrial disease
BACK: Be part of the cure

FRONT: Mitochondrial Diseases = Invisible diseases
BACK: Increasing Awareness can help Increase Understanding

FRONT: Mitochondria Produce 90% of the energy your body needs to function.
BACK: Mitochondrial Failure causes cell injury which leads to cell death. As multiple organ cells die, there is organ failure.

FRONT: Mitochondria are the power plants for the human body.
BACK: Mitochondria produce energy molecules by turning food and oxygen into adinosine triphosphate

FRONT: Mitochondrial Disease Awareness Week September 16-22, 2012
BACK: Be part of the cure

To Use Them:

  • Just save the PDF file (HERE) to your computer.
  • Print them – either at home or somewhere like Office Max or Staples. I brought mine to Office Max and had them print them on glossy cardstock for 69¢/page – cheaper then using my my own ink!!!
  • Cut them out!
  • Then use double stick scotch tape to attach them to whatever – straws – pencils, food picks, & more!

Be sure to upload your photos of your printable flags in use to our facebook page!

We’d love to see your creative ideas!

 

- – – – – – – – - – – – – – – – - – – – – – – – - – – – – – – – - – – – – – – –

Lastly, how about another Awareness Week Giveaway?!?
Same as last year – 2 winners will get to choose between a Mitochondria: The Missing Piece Awareness Pin and a DNA Headband in the size of their choice!
a Rafflecopter giveaway

Be sure to check back here through awareness week for more posts & freebies!

My Top 10 Tupperware Products for People with Disabilities

 

It was the first week of January when  a friend of mine Facebook messaged me asking me if I wanted to hold an online Tupperware party.  I figured, why not… I went to Tupperware’s website, poked around while I was chatting with her, then asked if I could hold a “real” Tupperware party.

You see, I’d never actually been to one. My mother held them every few months when I was a kid – so she could earn all the hostess gifts. She’d invite all her friends from church over, and send my sister and I to bed early and we’d try to eavesdrop from the top of the stairs to see why everyone was laughing and what it was we were missing. I couldn’t figure out what was so funny about looking at pieces of plastic.

We set a date  and I made a Facebook event. I invited my friends and my sister immediately replied something to the effect of: “I already claimed moms Tupperware when she dies, so you’re going to have to buy your own!”  I wasn’t THAT desperate for Tupperware, I just thought I’d throw a party for fun!

I just pictured Tupperware as modular mates  and food storage containers so I only had intentions of buying sippy cups for my daughter since I know I have a hard time dealing with getting lids on containers due to neuromuscular disease & hand muscle weakness.

But as I watched the consultants set up for the party, I was surprised to see that Tupperware was more then just plastic bowls! As soon as they started demoing some of them, I went from planning to buy “just sippy cups” to realizing how many of the products would dramatically improve my ability to prepare food despite my disability. And by the end of my party, I decided to become a Tupperware consultant was because I realized how much some of these products could improve the lives of others with disabilities!
 

My Top 10 List Tupperware Products for People With Disabilities

NOTE: I’m not a medical professional, just a person living with neuromuscular disease and a spinal cord injury (incomplete, C2) who has tried these first-hand to see what Tupperware products work for me and which don’t. So, whether you have a disability yourself, or are trying to find a gift for someone who is, these are the products I’d most recommend!

 

Food Prep Tools

 

1. The Smooth Chopper 

Price: On Sale for $35 this month – ($59 Regularly)
http://www.my.Tupperware.com/CrystalEvans

What it does: It can easily chop, blend, whisk and emulsify food  – just by pulling a string! You can chop fruit, veggies, or other foods with the blades attachment, or use the whisk attachment to make smoothies, puree food, make baby food,  creamy beverages or dressings, savory sauces and more!

It’s also compact – great for on the go since it doesn’t require electric! It also comes with a virtually airtight, liquid-tight seal for convenient fridge storage – so you can store your food in the container you prepared it in!

Here’s a video of how it works:

How it helps me: I have a hard time with both gripping a knife while pushing down to cut veggies, so chopping food is tricky. I do have the ability to pull the string to let it chop! It’s also easier for me to use then a blender from  a wheelchair! It’s less awkward since I can use it on my lap, rather then trying to reach across a counter to a plugged in appliance. It’s smaller and easier to handle!
People I think the Smooth Chopper is ideal for: Anyone, really! But it would especially make food prep easy for:

  • A wheelchair user – rather then using electric appliances which may be awkward to reach/use at a kitchen counter
  • Someone with difficulty with fine motor skills  such as individuals with  spinal cord injury (depending on their level), people with neurological or neuromuscular diseases, etc – if they have the ability to get the handle between their fingers & some strength to pull the string.
  • It may also be useful for an elderly person or someone with arthritis (depending on how it affects their hands)
  • It’s awesome if you have a baby with a strict diet or food allergies! You can make baby food from scratch AND on the go
  • Someone who needs pureed food – this works on the go!

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

 

2.  Chop ‘N Prep™ Chef  
Price: On Sale for $29 this month – ($45 Regularly)

http://www.my.Tupperware.com/CrystalEvans

What it does: Essentially it’s a smaller version of the Smooth Chopper – without the whisk attachment. The Smooth Chopper has 3 cup/700 mL capacity, the Chop ‘N Prep™ Chef has 1¼-cup/300 mL capacity – It’s much smaller and more portable!

How it helps me: If I’m making something where multiple things need to be cut up, I often use this along with the Smooth Chopper! or if I only need a small amount of something – say parsley – it’s easier to use the smaller container then the Smooth Chopper!

People I think the Chop ‘N Prep™ Chef is ideal for:

  • Same list as the Smooth Chopper (see above), except for the people using it for baby food or puree since this one is smaller without the whisk.

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

 

3. Quick Chef Pro

Price: $69

http://www.my.Tupperware.com/CrystalEvans

What it does: The Quick Chef Pro is a  non-electric food processor! It has blades that can can chop food, it has a paddle whisk for mixing and whisking ; a funnel with measurements for making dressings; a small basket to dry fresh herbs or to use as a salad spinner for small salads; an ergonomic cover with   handle; and an airtight and liquid-tight seal for storing.

See it in use here:

How it helps me: I love this because it’s more portable then a large electric food processor! Being in a wheelchair, I have a hard time reaching the counters, let alone inside of a tall kitchen appliance! This has no cord, so I often just put it on the dining room table since it’s lower then my kitchen counters so I can prepare food!

People I think the Quick Chef Pro is ideal for:

  • Wheelchair Users – as long as you have good arm strength to turn the handle! NOTE –  Some people with disabilities affecting their arm strength, or that experience shortness of breath from exertion may find it a bit more difficult to use then the Smooth Chopper.
  • Of course any able-bodied person would love it too!

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

 

4. Can Opener

Price: $35

http://www.my.Tupperware.com/CrystalEvans

What it does: It opens a can by cutting along the outside of the can, leaving a smooth edge – rather then cutting around the inside of the lid leaving a sharp edge!

Here’s a video of it in use:

How it helps me: I ordered this product the week I was put on Coumadin (blood thinners) to avoid cutting myself on can lids! 8 months later, I’ve yet to see a sharp spot on any can I’ve opened! Plus, it’s easy to turn and doesn’t require a lot of strength unlike some can openers I’ve tried!

People I think the Can Opener is ideal for:

  • Anyone on Blood Thinners! – no need to worry about the never-ending bleeding cuts using this can opener! It would be the perfect  stocking stuffer for the parent or grandparent on Coumadin who already has everything!

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

Food Storage Containers

5. Counterscaping Liquid Container Set

Price: $39

http://www.my.Tupperware.com/CrystalEvans

What it does: Instead of a pile of oils & seasonings on your counter, put them in these containers for an organized countertop!

The caps are liquid-tight and best of all, they are easy to open! If you have difficulty screwing/unscrewing lids on your oils, marinades, vinegar and other liquid cooking essentials, all you have to do is press down on the lever and it opens, but locks shut when you’re done! They look fab too!

Set includes one each of:

  • ¾-cup/200 mL Small
  • 2½-cup/600 mL Medium
  • 4¼-cup/1 L Large

See the product video:

How it helps me: I have a couple sets of the Counterscaping Liquid Containers as well as 2 sets of the Counterscaping Dry Seasoning Container Set. That way, as a wheelchair user, I have everything I frequently use in reach when I’m cooking so I don’t have to try and get items from high shelves (glass olive oil jars aren’t ideal object to reach with a grabber)! And at the same time, it keeps my countertops from looking like a pile of clutter!

People I think the Counterscaping Liquid Container Set is ideal for:

  • People with fine motor problems who have trouble getting screw lids on and off.
  • People in wheelchairs – so everything is in reach on the counter!
  • …And of course, anyone with OCD :)

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

 

6. Fridge Stackables Set

Price: $19

http://www.my.Tupperware.com/CrystalEvans

What it does: This is a 3-layer container that you can use to store cheese, sandwich meats, tomato slices, hot dogs & more!!!

How it helps me: I have a hard time with trying to get lids for a lot of containers on. These “snap” together so they are easy to put together and take off… I find myself using them to store things in my fridge other then just meats & cheese!

Additionally, I have a hard time with ziplock bags (unless they have that slider to lock them), so when I get foods from the deli, I’ve had them go bad quickly because I couldn’t re-seal the container. This makes it easy! This $19 purchase has helped me not waste a lot of food! :)

People I think the Fridge Stackables are ideal for:

  • Anyone who has trouble re-sealing ziplock bags from the deli!
  • Anyone looking to store food in a small container that has difficulty with regular lids!

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

 

7. Vent ‘n Serve

Prices:

http://www.my.Tupperware.com/CrystalEvans

What it does: These containers can be used in the fridge, freezer and microwave! Their unique venting system allows steam to escape while reheating food in the microwave!

How it helps me: Vent ‘n Serve lids are super easy to get on/off unlike many of Tupperware’s food storage products. I also love them because the lids are the same size for their sets and instead the various sizes are deeper – so I’m not sitting there trying to find the “right” lid every time! And, it reheats my Chinese take-out perfectly every time! yeah!!!

People I think the Vent ‘n Serve containers are ideal for:

  • Anyone who has trouble using the lids on other Tupperware containers. These will be easier for you! :)
  • Anyone who relies on the microwave for meal prep!

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

 

Microwave Cooking

The last 3 items are from Tupperware’s line of Microwave Cooking. I spent most of my 20s living in elderly housing (yes, seriously – since that’s where the wheelchair accessible apartments were!) and I can’t tell you how many times a month the fire department responded to fire alarms for elderly or disabled people forgetting food on the stove. We actually had 2 fires in my building as a result.

I also had uncontrolled seizures for 5 years following a traumatic brain injury from a car accident as a teenager, and during that time, I wasn’t allowed to use my own stove or oven unsupervised. My food options were very limited. I wished I knew about some of these products years sooner!

 

8. Microwave Pasta Maker

Price: $29

http://www.my.Tupperware.com/CrystalEvans

What it does: You can prepare perfect pasta in minutes in the microwave with this product! It has a built-in strainer so you can cook, strain & serve out of the same container! It will save you from all the extra dishes as well! :)

Watch how it works here:

9. Smart Steamer

Price: $139

http://www.my.Tupperware.com/CrystalEvans

What it does:  Makes the perfect meal, in the microwave! Yes, seriously! I’ve cooked chicken, salmon, veggies & more in mine – meals in 10 minutes!

From  Smartsteamer.com:

Breakthrough Technology:
The remarkable Tupperware® SmartSteamer blocks microwaves from cooking foods by directing them to the Water Tray (4), causing the water to boil and the steam to rise for perfectly steamed foods.

The two-tiered system allows for cooking one or two foods at once. Place one food in the Base (3) and the other in the Colander (2) then stack, cover (1) and steam.

Beautiful Design
Elegant design and color make the Tupperware® SmartSteamer suitable for serving directly on the table. Simply discard any remaining water from the Water Tray (4), place the Steamer Base (3) back on the Water Tray (4) and place the Colander (2) on the reversed Cover (1). Always place them on a trivet to protect table surface.
Instead of the microwave heat cooking the food (and often drying it out), the Smart Steamer is designed for the microwave to boil the water located in the bottom layer. The water then steams the food!
See it in action:

Visit Smartsteamer.com for more details!

NOTE: There are also add-on’s to this product – the 9-Pc. Accessory Set for Tupperware® SmartSteamer  ($35) and the Smart Meals Recipe Book ($15)! It’s an expensive investment, but is ideal if you want to host a Tupperware Party – get  it as a 1/2 price item, or use your hostess credits towards it!

People I think the Microwave Pasta Maker & Smart Steamer are ideal for:

  • Anyone with Memory problems including Alzheimer’s, Dementia, Stroke, Brain Injury- If they are allowed to do microwave cooking!
  • Also great for people with Seizure Disorders, Narcolepsy, or on medications which may cause drowsiness preventing them from the safe use of a stove!
  • It’s also a must have for any mom! Easy meal without having to wonder what your kids are up to while you’re busy cooking! :)
  • Also great for college students cooking in a dorm!

If you love these, also check out Tupperware Microwave Rice Maker & Breakfast Maker!

 – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

10: Soup Mug

Price:

http://www.my.Tupperware.com/CrystalEvans

What it does: Soup mugs are awesome for soups, oatmeal & other hot cereals, ramen noodles & sauces! The CrystalWave® mug has a vent that flips up while cooking and the Vent ‘N Serve® has it’s own vented silicone valve.

How it helps me: In a wheelchair, it’s ALL about the handle!!! I use my Vent ‘N Serve soup mug (that I got FREE for hosting my first party!!!) all the time. Instead of trying to roll around with a hot bowl in my hand, or worrying about spills, while I roll around with hot liquid, I leave the cover on, carry it by the handle and roll to the table easily! I don’t know how I lived without it!

People I think the Soup mugs are ideal for:

  • Wheelchair users – easiest way to transport hot liquids!!!
  • College students in a dorm!
  • Anyone else, literally!!!

And, since soup mugs really ARE ideal for anyone, I’m giving a CrystalWave® Soup Mug away!!! :)

Enter via Rafflecopter:
a Rafflecopter giveaway

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

If you like what you see, host a Tupperware party to earn it FREE!

If you’re in the Boston-area, I can do a party at your home or workplace! If you’re not local, I can send you catalogs to do a catalog party. 

Or you can set up an online party in just 5 minutes! Here’s how:

  1. Go to my Tupperware webpage: http://www.my.Tupperware.com/CrystalEvans
  2. Click on “PARTY INSPIRATION CENTER” at the top.
  3. Go down to  “HOST AN ONLINE PARTY!” and click “About Online Parties”
  4. Next, click “Open my Online Party” and follow the instructions to set up your party!
  5. Once it’s set up, be sure to E-mail your friends (or share your link to facebook)

If your online party sales go above $200, you earn  10% of Online Party Sales as an eGift Certificate to purchase Tupperware® products at the Tupperware Shop.

1000 Paper Cranes for Leslie’s Wish

Since a lot of you LOVE D.I.Y projects, I thought I’d involve my readers in a DIY project to help someone else’s wish come true:

Leslie (Whitt) Williams is a 24 year old from Ohio who is quickly losing her battle with mitochondrial disease. I asked her older sister, Megan, to tell us a bit about her:

Leslie is spirited and spunky. When we were growing up she always knew how to make me laugh. She has a fearsome temper, but she is lovable in spite of it. She isn’t afraid to tell you how it is, and she has an amazing amount of love and respect for people. All kinds of people, too.

When she was able, she did a lot of volunteer work. She loved working with an organization here in Cincy called Starfire.

She has always been interested in science, medicine specifically. She wanted to be a dietitian. Leslie is also an avid reader. She loves books and she loves movies (romance and romantic comedies). Probably one of her all time favorite activities is shopping. Her and my mom shop all the time. Shoes, bags, jewelry, dresses, you name it. She has a keen eye for fashion and good taste.

Les has been married to her husband, Jeff, for a little over a year now. They are both really into sports. Leslie loves the Cincinnati Reds – they used to go to games together whenever they could.

One of the (many) reasons mito has been so hard on Leslie is she used to be so active. She played every sport you could think of when we were growing up. She loved soccer, softball, and basketball. It’s very hard on her, not being able to move around the way she used to.

Because Leslie’s body cannot properly turn food into the energy needed for organ function due to mitochondrial disease, she now relies on IV nutrition called total parenteral nutrition  or TPN since her digestive tract has shut down. She needs a wheelchair due to muscle weakness, frequent blood transfusions, and is frequently in the hospital for prolonged periods of time. She also has a service dog, named Billy! Read more about Leslie here.
Leslie is rapidly running out of time and has a bucket list of things she wants to do before she dies. Last week, The Dream Foundation granted her wish to see Reba McEntire:

Many of the remaining things on her bucket list include traveling – something that is being coming increasingly difficult for her as her symptoms become more severe. But there is one thing on her bucket list we CAN help with:  Leslie would like to fold 1000 Paper Cranes.

There is an ancient Japanese legend that anyone who folds 1000 origami cranes will be granted a wish, or in some versions of the legend, you get eternal good luck, long life, or recovery from illness.

Of course, Mitochondrial Disease is an energy metabolism disorder, so Leslie has very limited energy and can use our help folding paper cranes!

If you have a few minutes to make a crane for Leslie, grab a square sheet of paper, fold a paper crane, and write/stick/draw/glue some inspirational words, encouragement, positive thoughts, wishes of your own, etc., onto the crane!

I offered her family to use my PO box to collect them, then I’ll be sending them all unopened envelopes to her family on August 30th, so please mail them to me by August 29th and I’ll drop your envelope in the box to her family!

Mail to me at:
Little Free Radical
ATTN: Cranes for Leslie
PO Box 850673
Braintree, MA 02184
Read more about Leslie here.

 

 

 

Here are directions for how to make an origami crane:

My Rare Disease Story: Living with Mitochondrial Myopathy

I joined the The Global Gene Project for a BLOG HOP to help promote awareness for the upcoming Rare Disease Day on February 29th, 2012by sharing my story about living with mitochondrial myopathy. 

In the United States, a disease is considered rare if
it is believed to affect fewer than 200,000 Americans.

What does the R.A.R.E. Project stand for??
Rare Disease | Advocacy | Research | Education
30 days from now is World Rare Disease Day. Why is the number 30 significant? 30% of children with RARE disease will die by their 5th birthday.

Did You Know:

  • An estimated 350 million people are affected by rare disease worldwide.  
  • 1 in 10 Americans is affected by rare disease, that’s over 30 million people. 30 million Americans is more than the total number of people living worldwide with cancer & aids.  
  • There are more than 7,000 rare diseases with some affecting less than 100 people. 75% of rare disease affect children.
  • Almost 80% of rare disease are genetic in origin.
  • These rare conditions are chronic, life threatening and FATAL. There are NO cures for any rare disease, and only 5% of the diseases have any treatment.
  • Over 50% of Rare Diseases have no foundations, advocacy group or community support.
My Rare Disease Story
Living With Mitochondrial Myopathy
My name is Crystal and I am living with Mitochondrial Myopathy – a metabolic disease of the muscle included in the umbrella of over 40 rare neuromuscular diseases covered by the Muscular Dystrophy Association!

Mitochondrial Disease means that my body cannot properly turn food and oxygen into Adenosine triphosphate (ATP) – the energy molecule necessary to sustain life. Because the disease is in my cells, it affects multiple organs causing secondary diseases.

Although my symptoms started in early childhood, it took doctors over 20 years for a diagnosis, since Mitochondrial Disease is considered RARE.

History of Mitochondrial Disease
Mitochondrial disease was first described in a patient in Stockholm the 1960s, but it wasn’t until 1988 that the first molecular identification of cause of mitochondrial diseases occurred. More patients with various forms of mitochondrial disease were diagnosed through muscle biopsies in the 80’s and 90s, but it wasn’t until the last decade that many doctors began to understand how to identify patients affected by mitochondrial disease.

Additionally, after the completion of the Human Genome Project in 2003, several of the disease-causing genes in both the nuclear DNA genome (nDNA) and the mitochondrial DNA (or mtDNA) genome were identified, and genetic tests have become available to test for them – making diagnosis of mitochondrial disease easier. Additionally, several forms of Mitochondrial Disease can be tested for through newborn screening!

Though diagnostics are improving, there are still very few doctors that know how to recognize and correctly diagnose it. In my case, I was actually correctly diagnosed in 2005, when muscle biopsied for a misdiagnosis of polymyositis (another rare neuromuscular disease). Mitochondrial Disease had never been ‘suspected’ in me, so when my biopsy was sent to a lab they realized it had been mitochondrial myopathy all along, not an auto-immune disease as I had been mis-diagnosed with several times.

How Mitochondria Work:
Inside of nearly every cell in your body are tiny organelles called “mitochondria.” These organelles act as “cellular power plants” because they produce more then 90% of your body’s cellular energy. When you eat, mitochondria convert the food into its energy form called adenosine triphosphate or ATP through a process called cellular respiration which occurs in the electron transport chain.  The energy (or ATP) is necessary to sustain life as they provide cellular energy for organ function.

What Happens When They Don’t Work?
Research shows that if the mitochondria malfunction, it can lead to a number of diseases depending on which cells in the body are affected. Mitochondrial dysfunction plays a role in several neurodegenerative diseases including Alzheimers, Parkinsons, Huntingtons, and Lou Gehrigs disease (ALS – Amyotrophic lateral sclerosis), and studies have shown mitochondrial dysfunction to also be a piece to the puzzle for more common conditions including diabetes, certain cancers, heart disease, blindness, deafness, kidney & liver disease, stroke,  and autism. Mitochondria also play a role in the aging process!

In addition, as many as 2 million American’s suffer from mitochondrial diseases – a group of diseases resulting from gene mutations in the mitochondrial and/or nuclear DNA. When these mutations occur, they can also lead to malfunction along the electron transport chain resulting in cell injury due to insufficient energy from their cellular powerplant (the mitochondria). Cell injury can lead to cell death, and when multiple cells die in one organ, that organ won’t have sufficient energy for functioning. As this happens in multiple organs as the disease progresses, the individual can portray a wide variety of symptoms.

For me, mitochondrial disease has effected my heart, neurological system, muscles & lungs the most. These organs require the most energy to function, so with insufficent energy it has caused symptoms such as seizures, stroke-like episodes, dysfunction of the autonomic nervous system (which regulates things such as heart rate, blood pressure, body temperature), and  muscle breakdown (myopathy) resulting in me needing to use a wheelchair for mobility and a ventilator due to lung muscle weakness causing pulmonary failure. I also use IV infusions to help stabilize the autonomic nervous system and increase my heart rate & blood pressure.

Another person with mitochondrial disease may present completely different. Some individuals may have less trouble walking and more trouble with issues like learning disabilities, autism, cognitive problems or developmental delays. Some may become deaf or blind while others rely on feeding tubes for nutrition. No two individuals (even within the same family) will present the same way. Because of this, it makes it harder for many doctors to recognize the signs.

Did You Know: There are more children in the US affected with Mitochondrial Disease then all forms of childhood cancers combined! Mitochondrial Disease may be considered a “rare disease,” but it’s far more common then you’d think! At least 1 in 4,000 people in the United States are living with Mitochondrial Disease! Who are some of these people? Here are a few familiar faces:

Actress Chandra Wilson (Dr. Miranda Bailey from Grey’s Anatomy)‘s daughter, Serena is living with Cyclic Vomiting Syndrome (CVC) – a Mitochondrial Disorder. She shared her daughters story  on The Doctor last year:

Baseball Player, Rocco Baldelli put mitochondrial disease in the news in 2008 when he was diagnosed with Mitochondrial Disease. He was later diagnosed with a channelopathy, but his story inspired many young children also affected by Mitochondrial Disease. During his career, he played for both the Tampa Rays & the Boston Red Sox, but after numerous injuries, his health forced him to retire at age 29.

http://c.brightcove.com/services/viewer/federated_f9?isVid=1
“I physically don’t feel like I should be playing anymore.”Rocco Baldelli 

Charles Darwin (father of evolution) spent his life battling a chronic medical condition which multiple researchers believe to be a maternally inherited (mtDNA) Mitochondrial Disorder. Here are some articles about it:

Mattie Stepanek (MDA National Goodwill Ambassador 2002-2004) also lived with Dysautonomic Mitochondrial Myopathy and died shortly before his 14th birthday.  Since Mitochondrial Disease is genetic, Mattie’s entire family was affected by the disease. His mother, Jeni, lost all 4 of her children to the disease. Here’s his story as told by his mother:

They’re not going to find a cure to this disease, in my lifetime. 
But like Mattie, I believe that finding a cure to any of the diseases is not about a specific lifetime, it’s about being a part of the effort because it’s somebody’s lifetime. 
          I am a part of the cure whether that cure is found in 10 years or 100 years.
- Jeni Stepanek

Babywearing from a Wheelchair

Since it’s International Babywearing Week, I thought I’d blog about the adventures of babywearing at our house!
Sophie, 15 months wearing Bitty Baby in her Beco Mini

“Babywearing” simply means holding or carrying a baby or young child using a cloth baby carrier. Holding babies is natural and universal; baby carriers make it easier and more comfortable, allowing parents and caregivers to hold or carry their children while attending to the daily tasks of living.

Babywearing helps a new dad put a fussy newborn to sleep. It allows a new mom use both hands to make a sandwich. It lets an experienced parent or caregiver carry a baby on her back and wash the dishes, do the laundry, take a hike, or weed the garden, all while keeping the baby safe and content.
Babywearing was something I knew I would do years before I actually became a parent. I had several friends with ring slings, and I thought they were fantastic! So while most of the other parents on 1st trimester pregnancy forums were chatting about the cutest little outfits they saw at the mall, I was busy looking at slings, wraps, and soft structured carriers.
I was totally excited when I went to Diaper Lab (Somerville, MA) and discovered that in addition to cloth diapers, they also sold several types of baby carriers. And of course I was even more excited when they were offering a babywearing workshop where I could drag my husband to go learn about babywearing safety and have someone demo the various types of carriers.
Being a soon-to-be-parent living life from a wheelchair, due to neuromuscular disease (Mitochondrial Myopathy) sort of complicated things.  As I began researching, I decided the important things I needed in a carrier were:
  • One that would be easy to put on while sitting.
  • It needed to be comfortable to wear while sitting – no lumpy ties or buckles between me and the back of my chair.
  • To be able to breastfeed from the carrier on the go.
  • And it needed to be very supportive of the baby without overworking my muscles as mitochondrial myopathy is an energy metabolism disease – and finding ways to “conserve” cellular energy – including muscle use – is key to managing the disease.
  • I should also note that I’m in pulmonary failure due to neuromuscular disease. I deal with collapsing lungs due to lung muscle weakness. A carrier with minimal pressure on the chest is very important for me! I do have a wheelchair with both tilt & recline functions which can relieve some of the stress of the carrier on my muscles & chest.
I also found the Boston Babywearers group and went to a meeting while 7 months pregnant since I wanted to try some carriers to see how they felt before I was “TOO big” to get a good feel of what it would be like.
Wraps: I figured out quickly watching at Boston Babywearers & Diaper Lab’s workshop that a wrap would not be ideal to put on in a wheelchair. It’s essentially a long piece of fabric that you can tie around yourself to hold the baby. Moby Wraps are a popular brand – but watching a demo of how to put it on, seemed way too tricky for me to attempt with a newborn in a wheelchair!
Mei-Tai: While pregnant, I thought the Mei Tai would be awesome. A friend gave me her pink BabyHawk since she had a boy the 2nd time. I did use it several times, from my manual wheelchair when Sophie was a newborn, but found tying it to be difficult from a high-back power wheelchair. I do plan to try it again now that she’s 15 months, to see if I can get the hang of it, since she can sit up independently – unlike how it was at 2 months when I tried. Also, the ties got “lumpy” behind my back.

Ring Sling:I knew this was the must-have,as they are easy to get on/off, are great for a wide age-range, and breastfeeding was easy in this position.

Pouch Sling: I loved these too, but because I ended up with severe generalized edema while pregnant,  I decided against getting one since my size would change as the fluid distribution shifted. I didn’t want to buy one only for it not to fit me later. Plus the way you wear it looked a bit limiting from a manual wheelchair when I needed 2 hands – a ring sling was a bit more adjustable.
Soft Structured Carrier: I’d heard many pro’s & cons about these – carriers like Bjorn, Snuggli and Infantino (aka in the babywearing community as “crotch-danglers”) tend to give all soft structured carriers a bad reputation because of the unnatural positions they put babies into which can be stressful on a baby’s developing hips and spine. While they might be “safe” for an occasional walk around the mall or a trip to the grocery store, these are far from ideal when babywearing for hours – much like how it’s not good to leave a baby in an exersaucer or jumperoo for extended periods of time. but unlike these toys where the baby’s feet can touch the ground, a baby “hanging” in a soft structured carrier for hours just has his or her legs dangling. Of course it’s slightly different in the case of a parent in a wheelchair who would wear the baby sitting instead of standing, but to avoid these issues, I almost overlooked this category of carriers altogether… must after much research, I decided to give them a try – I’ll explain later.


My first baby carrier was a Sakura Bloom Linen Ring Sling - which I got for about $88 at Diaper Lab. I had it packed into my hospital birth bag so that I could start using it the day Sophie was born! And yes, she was less then 24 hours old (or new?) when I first put her in. She was cozy and happy right from the start. Here she is 2 days old… is it me, or is that a smile I see in the photo on the left? :)
I loved my ring sling in the early months! As a newborn, Sophie and I went everywhere with it. Of course people see a parent in a wheelchair and all have to point & stare… I must have been asked a good dozen times, “is that a real baby in there?” (like what, did they expect me to be rolling around with a doll? um, no)! Of course once I clarify that yes, Sophie is a real baby, people want to know “where I got her.”  – but I’ll save the questions I get asked as a parent in a wheelchair for an entirely separate blog. :)
Babywearing with Central Line Access: The only thing I wasn’t thrilled with was the baby’s head being so close to my accessed port. If you look closely in the photos you’ll see the yellow port needle, where it’s accessing the port implanted in my chest (for IV infusions). I always had to adjust the sling low enough early on so her head wouldn’t be resting on the hard plastic and hurt her or me. I ended up with sepsis when she was about 2 months old and ended up losing that port – so I had them replace it with a tunneled central venous catheter instead – not soley for babywearing reasons of course, but it seemed the best option after meeting with Infectious Disease, my infusion company and doctors. I found this type of line to be much more comfortable for both of us while babywearing. It’s softer and doesn’t hurt as much having a head against my chest all day.
Babywearing Sophie at 7 weeks old – in Colours Razorblade Manual Wheelchair – Rockport, MA
Babywearing a High-Tone Baby: I did find the ring sling easy to use from a manual wheelchair with a newborn. However, Sophie has hypertonia (high muscle tone), so it did get tricky at some points trying to find a position comfortable for both of us. By around 4 months, she decided it would be wicked awesome to spend her days like a jack-in-the-box. I put her in the sling asleep so we could go out, and suddenly she’d wake up and pop up to see what was going on in the world. I’d have a hard time repositioning her in a way that she would stay. She would stand all day and play at home by 5 months – but was unable to stay sitting unassisted til she was 7 months due to her muscle tone. Having a “stiff kid” can be a bit tricky in a sling. It was at this point where I decided to re-think the idea of a soft-structured carrier.


I did my research again about carriers, visited Boston Babywearers again to try products with Sophie this time, and was torn between the Oh Snap! BabyHawk and the Beco Butterfly 2 - but finally decided on the BB2 as seemed to be more comfortable for me personally – of course “comfort” may vary depending on people’s sizes & shapes.

I loved the Limited Edition Echino Scooter Beco and ordered it from Pax Baby for $205 in October. It was supposed to arrive mid-October, but sadly it took til mid-December for it to arrive since she was importing it from overseas. So, October-December were very long months waiting to test it out. It was worth the wait though!

Sophie loved it right away! Once again, I could take her out all day and she was happy. It was comfortable for me too. I have low muscle tone & poor “trunk control” due to neuromuscular disease but we had a great first 6 months with it!

But around her birthday, it started to get a bit trickier for me to carry her – She decided it was fun to “stand” in it all day, and as she was getting taller, her face would be in my way. I’d be trying to roll down the sidewalk, but Sophie kept standing trying to look me in the eye. If I moved my head to see where I was going, she’d follow me – she thought it was the best game ever!

Then she started finding new games including:

  • Let’s pick mom’s nose!
  • Let’s take off mom’s glasses I can pokey mom in the eyeball!
  • And my (least) favorite: Let’s take the chewed food out of my mouth and put it in mom’s mouth, then take it back for my mouth! 
Plus all this standing/jumping on my lap all day was putting a lot of pressure on my back and shoulders. That’s when I decided to re-think the front facing carrier issue. Babies can get overstimulated easily in a front-facing carrier which is one reason NOT to (in addition to the fact that most front-facing carriers are also the crotch-danglersI described earlier). But Sophie was now over a year old. I thought it seemed to be an okay time to let her sit front facing on my lap.

I looked at several carriers – checked weight ranges, hip support, and other factors before deciding to go with another Beco – the Gemini It had the option for the baby to face in either direction. It was also easy for me to turn Sophie between front & rear facing without having to take her completely out – something I wanted – in case she fell asleep or if I wanted to talk to her.
As soon as the Gemini arrived, we took it out for a test-drive around the neighborhood. Sophie had a blast  “flying” (yes, with her arms straight out) on mom’s lap! It was a whole new view of the world for her! She’s happy & content and isn’t jumping on me all day – I love it, she loves it!
I’m hoping to get at least another 6 months of use out of the Gemini. I’ve also been using the Sakura Bloom Ring Sling again. It got a bit easier as Sophie got older to position her in it and I’ve found a few of fantastic positions over the summer that can be done in a wheelchair!!!

We are going to Boston Babywearer’s group on Wednesday to look for “Toddler Tricks” from other moms and of course to celebrate International Babywearing Week! But this summarizes my experiences with my first 15 months of babywearing as a parent living an active life from a wheelchair.

NOTE: If you’re pregnant or a parent in a wheelchair, feel free to comment or contact me if you’re shopping around looking for carriers and baby gear! I’d be more then happy to give you more details on what worked – and what didn’t work from my experiences. :)

MEDIA STORY: tiny studio, gigantic results

Little Free Radical was featured in the local newspaper this week! Here is the article:
Tiny studio, gigantic results
North Revere resident finds success — and strength — in her home-based sewing business
Photo Credit: Ana Paula Massoni of Massoni Photography

By Seth Daniel
Revere Journal
September 28. 2011

When Crystal Evans surveyed the challenges facing her two years ago, she realized she had to turn somewhere.

She was battling a degenerative neuromuscular disease, Mitochondrial Myopathy, and had become confined to a wheelchair. Her disease prevented her from holding a regular job. She was struggling to keep her health insurance in effect. And she and her husband couldn’t get legally married because it would cancel her health insurance. Meanwhile, they were expecting a baby.

For that long and complicated list of problems, the last solution she would have thought to pursue was starting her own business, but that is what she did and it’s what ended up changing her life for the better.

In fact, sewing children’s toys for her one-woman company, Little Free Radical* – based out of the family’s North Revere apartment – has been just as therapeutic for her illness as it has been successful.

“Sewing is actually very therapeutic for me and I’ve gained a lot of my strength back since starting my business,” said Evans, whose pieces were recently featured at a Celebrity Gift Lounge event associated with the Primetime Emmy’s in Hollywood. “This business has helped me therapeutically and helped me get out of the situation with my health insurance, all at the same time. Running a business also helps emotionally when you’re dealing with chronic illness. A lot of my friends with this illness get down and it’s hard for them. They look at me like I’m insane because I’m happy. The business is my motivation.

As an aside, she said Mitochondrial Myopathy is a disease that’s in the same family as Muscular Dystrophy. Over time, the illness weakens the muscles and prevents the body’s cells from turning food into energy. It results in a debilitating condition where complete major organ failure is possible at almost any time – simply because the body does not have enough energy to keep them going.

Evans entered her entrepreneurial endeavor quite by accident. About two years ago, Evans and her husband moved to North Revere’s Overlook Ridge community from Somerville. After having their first baby, she began sewing some stuffed balls and other toys for her daughter to play with. Sewing was something she could do in her wheelchair and was also something she had learned how to do many years ago in high school.

One day, while hosting a friend, she was asked why she didn’t sell the toys she was making. That’s when the gears started turning. “I would sew little stuffed balls, and I made a tu-tu, some stuffed animals and some dresses,” said Evans. “My friend thought they were the best thing ever and the other people she showed it to saw them and started asking me to make the same things for their kids…The problem with a regular job was that I’m in the hospital, sometimes once a month. You can’t hold a job when you’re constantly sick or don’t feel well a lot. So, I decided to run with this and start something at home.” Getting the business off the ground, ironically, proved to kill three or four birds with one stone.

Evans said she and her husband had been prevented from officially marrying because it would have caused her to lose her state health insurance – which she desperately needed for her illness. One of the issues was that if she married, she had to work 40 hours per week. Obviously, she wasn’t able to do that at a traditional workplace, but working full-time from home could very well be done.

“I approached the people at MassHealth and they loved the idea,” she said. Once everything was set, she and her husband finally tied the official knot. Two birds down. Once she set up her business, displaying items in a boutique in Cambridge and setting up a high-visibility online store via the Internet, she began to get several orders. Pacing herself, she began working on the orders and it began to help improve her physical and mental condition. Her Internet store, which is on the well-known crafting site Etsy*, helped her find materials and get orders. “I have to pace myself because if I get too strained, I could have complete organ failure,” she said. “However, maintaining a certain energy level is good for the Mitochondria.” Third bird.

Finally, the icing on the cake was that Evans’s business really began to take off. After being invited to join The Artisan Group, Evans was asked to make items for a Celebrity Gift Lounge event at the W Hotel in Hollywood, an event that preceded the Primetime Emmy Awards earlier this month. Celebrities such as Cloris Leachman and others were seen playing and endorsing her toys. It was tremendous exposure and similar opportunities will be available to her in the future, she said. “It was  pretty cool because the event organizer’s daughter liked my toys and picked them up and started playing ball with a lot of the celebrities,” said Evans. “So, my products got a lot of exposure that was totally spontaneous and unexpected.” For now, Evans has stuffed balls available and cloth stacking toys. She said she has plans to add toy elephants and baby bibs.

The remarkable part is she’s still sewing circles around the competition. “I was in the ICU in 2009 and they told me they didn’t expect me to last another year,” said Evans. “Well, I had a baby, was finally able to get married and I have my own business. I’m still here. I am still in the hospital a lot of times, but I am still here.”

Follow Us:

 

*spelling of Etsy corrected from Etsi and business name corrected to Little Free Radical from “Tiny Free Radical”

GIVEAWAY: mitochondrial disease awareness week

Since Invisible Illness Awareness Week was last week (September 12 – 18) and this week is Global Mitochondrial Disease Awareness Week (September 18-24), I thought I would write a post explaining how Mitochondrial Disease affects me personally. So here goes:

I’m a 30 year old, living with childhood-onset, mitochondrial myopathy – one of the 42 diseases covered by the Muscular Dystrophy Association. In fact, it’s the same disease that MDA Goodwill Ambassador, Mattie Stepanek and his 3 siblings died of.

Inside of nearly every cell in your body are tiny organelles called “mitochondria.” These organelles act as “cellular power plants” because they produce more then 90% of your body’s cellular energy. When you eat, mitochondria convert the food into its energy form called adenosine triphosphate or ATP through a process called cellular respiration which occurs in the electron transport chain.  The energy (or ATP) is necessary to sustain life as they provide cellular energy for organ function.

Research shows that if the mitochondria malfunction, it can lead to a number of diseases depending on which cells in the body are affected. Mitochondrial dysfunction plays a role in several neurodegenerative diseases including Alzheimers, Parkinsons, Huntingtons, and Lou Gehrigs disease (ALS – Amyotrophic lateral sclerosis), and studies have shown mitochondrial dysfunction to also be a piece to the puzzle for other conditions including diabetes, some types of cancer, heart disease, blindness, deafness, kidney  & liver disease, stroke, and autism. Mitochondria also play a role in the aging process!

In addition, as many as 2 million American’s suffer from mitochondrial diseases – a group of diseases resulting from gene mutations in the mitochondrial and/or nuclear DNA. When these mutations occur, they can also lead to malfunction along the electron transport chain resulting in cell injury due to insufficient energy from their cellular powerplant (the mitochondria). Cell injury can lead to cell death, and when multiple cells die in one organ, that organ won’t have sufficient energy for functioning. As this happens in multiple organs as the disease progresses, the individual can portray a wide variety of symptoms.

 MITO STATS:

• Every 15 minutes a child is born that will develop mitochondrial disease by age 10.
• It is estimated that of the 4 million children born each year in the United States, up to 4000 develop mitochondrial diseases.
• At least 1 in 200 individuals in the general public have a mitochondrial DNA mutation that may lead to disease.
• There are over 40 identified types of Mitochondrial Diseases and believed to be over 100 variants of mitochondrial diseases, .
• In the United States, more than 50 million adults suffer from diseases in which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found in diseases as diverse as cancer, infertility, diabetes, heart diseases, blindness deafness, kidney disease, liver disease, stroke, migraine, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer dementia.
• The World Health Organization (WHO) calculates that neurodegenerative diseases, also associated with mitochondrial dysfunction, will become the world’s second leading cause of death by the year 2040.

For me, mitochondrial disease has effected my heart, neurological system, muscles & lungs the most. These organs require the most energy to function, so with insufficent energy it has caused symptoms such as seizures, stroke-like episodes, dysfunction of the autonomic nervous system (which regulates things such as heart rate, blood pressure, body temperature), and  muscle breakdown (myopathy) resulting in me needing to use a wheelchair for mobility and a ventilator due to lung muscle weakness causing pulmonary failure. I also use IV infusions to help stabilize the autonomic nervous system and increase my heart rate & blood pressure.

Of course, holding a ‘normal’ job is difficult when living with a severe disability – especially when you average 12-15 hospitalizations a year for things like heart failure, lungs collapsing, and sepsis (from central line infections) and GI bleeds. So, when I needed to work 40 hours a month to maintain health insurance after marriage, I opened Little Free Radical on etsy! I make stuff as I have the energy, and when I’m sick or in the hospital, I get all the “computer work” done (maintaining my website, editing listings, shopping for supplies, etc). I’ve also brought small tasks with me to the hospital – such as stringing my hang tags! I’ve learned to be sick and productive at the same time between naps! :)

Since there are no real treatments for mitochondrial disease, learning to conserve your energy is key! I’ve learned to balance my energy to not over-exert myself. Very rarely do I make something start to finish in one day. When I feel up to it, I’ll go cut out a bunch of projects, then rest. Another day I might sew some of it. If I get too tired, I complete the sewing on a different day. Then I have a pile of completed products that just need to be stuffed. :)

Naturally, I wanted to make some products for Mitochondrial Disease Awareness Week – products that would initiate conversations! So. these are the products I came up with for Mitochondrial Disease Awareness Week 2011:


This pin is designed to be a conversation starter to give people affected by mitochondrial disease a chance to explain the role of mitochondrial dysfunction with more common diseases such as autism, alzheimer’s, huntington’s, parkinson’s, ALS, diabetes, etc!!! 

 ABOUT THE PIN: This pin measures approx 1.5″ wide by 2.5″ tall. It is made with a piece of green ribbon, the puzzle piece is pewter, and hand-stitched to a pin-back! The edges are finished with fray check to increase the life of your pin and prevent fraying! 
It comes in a cellophane bag, pinned to a sage colored card professionally printed with the following explanation:

FRONT: The green on this ribbon represents energy, and the puzzle piece in the center represents the mitochondria. The role of mitochondria play a key role in many diseases!

BACK: For 2 million people living with mitochondrial disease, it’s the piece to the puzzle that explains the connection between a variety of seemingly unrelated symptoms affecting multiple organs – an underlying defect in mitochondrial metabolism.

Studies have shown underlying mitochondrial dysfunction to also be a piece to the puzzle for up to 20% of individuals with autism. Mitochondrial dysfunction also plays a role in several neurodegenerative diseases including Alzheimer’s, Parkinson’s, Huntington’s, and Lou Gehrigs disease (ALS), as well as diabetes, some types of cancer, heart disease, blindness, deafness, strokes and are also involved in the aging process!

Funding mitochondrial research not only benefits people living with mitochondrial disease, but may also help with treatments and a cure for more then 50 million Americans living with diseases in which mitochondrial dysfunction is involved.

For more info on Mitochondrial Disease, visit mitoaction.org”

I also made some headbands with DNA fabric! Green is the color for Mitochondrial Disease Awareness and DNA represents Mitochondrial Disease as a genetic disease! The following sizes are available:

  • Baby – 6-12months: (fits head circumference 43 – 48cm)
  • Toddler – 1-3 years (fits head circumference 47 – 52 cm)
  • Child – 4-7 years (fits head circumference 50 – 55 cm)
  • Adult – 8 years – adult (fits head circumference 53 – 58 cm)
    If we don’t have your size, you can request custom sizing! :)

And last but not least, we have DNA cloth balls available in 4″ and 7″ – great toys for young children & kids with special needs!

A portion of each product sold goes to benefit MitoAction (Mitochondrial Disease Action Committee) – a Boston-based organization dedicated to improving the lives of individuals living with mitochondrial diseases through support, education and advocacy.  So far in the past month, through the sale of these products, I’ve been able to raise over $250 for MitoAction! you can get yours at http://littlefreeradical.etsy.com to help support the cause! :)

But, since it’s mitochondrial disease awareness week, I thought I’d do a GIVEAWAY for 3 lucky winners!

Prizes are:
  • A set of 2 Mitochondria: The Missing Piece Awareness Pins ($10 value) – or –
  • 1 DNA Headband (in the size of your choice) ($12 value)- or –
  • 1 DNA cloth ball set (in the color combo of your choice!) ($16.95 value)

You can enter for your chance to win by entering this giveaway via Rafflecopter. You must open the post for the giveaway widget to appear (click on the post title). Rafflecopter makes entering giveaways super quick and easy!



Mandatory Entry: Tell me in a comment below why Mitochondrial Disease Awareness Week matters to YOU! Additional entries are in the Rafflecopter widget (to improve your chances to win).

RafflecopterSettings = { raffleID: ‘ZDQ2ZjQ0NjgyMmM1ODdiZGE1ZGRjMWVkNmU5NDVkOjE=’ };

<a href=”http://rafl.es/enable-js”>You need javascript enabled to see this giveaway</a>.