Goal: Independence via Scooter Lift

I want to start off by thanking everyone who already offers their help in my day-to-day life. Things have changed relatively rapidly over the past three years. Without the kindness and help of so many wonderful people I am so so very lucky to know, I wouldn't be where I am today.

For the first 22 years of my life, I was stubbornly independent. Now, due to my muscular dystrophy, I rely on others for some sort of help on a daily basis. The transition hasn’t been easy - it feels like I lost all of my independence and sense of self. I usually feel guilty having to ask for help, being a burden to those around me. (If you’d like a recap of my symptoms and diagnosis, please see the bottom of this post)

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The biggest positive change in regards to my independence was getting my electric scooter in December of 2016. I was finally able to have some sense of freedom and normality again - which I had been rapidly losing with depending on a cane, then walker, and occasionally a wheelchair over the previous year and a half.

With the scooter, I can enjoy the freedom of going out to lunch and to different offices in Downtown Detroit. Every morning, I have to ask for the help of one of my (amazing, selfless, kind) team members to bring my scooter down - and again at the end of the day, someone must accompany me to my car so the scooter can be brought back inside.

Why?

I have a 2009 Fusion that cannot reasonably accommodate the scooter. And even if I had a larger vehicle, I can’t put the scooter in the there by myself.

I am trying take the cards I’ve been dealt, and make a new play. So here’s the plan for me to gain some independence, and where I could use some help:

Through MobilityWorks of Michigan , I can purchase equipment called a Joey Lift . This lift goes in the back of a minivan, crossover, or SUV. I’ll just have to find a vehicle I can drive and then MobilityWorks can install the lift.

I’m hoping to find a vehicle I can finance on similar terms as my current car, but there’s a lot of stress when it comes to getting the Joey Lift.

The cost and installation of the device is a little over $4,000.

Insurance doesn’t cover any of it. There are grants through the state for handicap vehicle assistance, but the ones I’ve found are only for fully accessible, custom vehicles - which actually wouldn’t help me because I can’t maneuver inside of them. I am still looking into those, but ultimately the Joey Lift seems like the best option for my situation.

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If you are able to help offset the cost of the purchase and installation of the Joey lift, that would be amazing.

I can’t even begin to convey how much stress it would lift off my shoulders to not ask for help every day I go to work; to be able to take myself to my own doctor appointments; to go grocery shopping; to do things I used to take for granted. It would allow for a feeling of freedom and independence that I didn’t think I would ever have again.

The goal I've set for myself is to have all the details sorted out by the end of the year, so I could possibly have a different vehicle and the Joey Lift by the end of January (as a little birthday present to myself).

And even if you’re not able to help financially, all I can ask for is patience and understanding.

Thank you for your time. Let me know if you have any questions.


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As I said, I tend to not talk about my dystrophy. So in case you don’t know the whole story of why I need the scooter, here’s quick recap of my symptoms and diagnosis:

Nov. 2011 - Fell, couldn't get back up due to pain and weakness. Went to the hospital, they found nothing wrong. Sent home.

Jan. 2012 - Started paying for health insurance through work. First time going to the doctor in two years.

Jan 2012 - August 2015: Endless. Testing. I started using a cane to in early 2015. Paying a bunch of money for insurance through COBRA because I switched jobs.

May 2016: Feeling pretty hopeless after being told at Henry Ford that there’s nothing I can do to help my condition, it’s never going to get better, and that the only other thing to do was a “useless” genetic test, I switch to the University of Michigan Medical Center.

July 2016: Finally get results back from the second muscle biopsy. We know it’s some form of Dysferlinopathy/Limb Girdle Muscular Dystrophy (LGMD). Next step is an expensive genetic test. Luckily my new doctor at UofM works with the Muscular Dystrophy Association and was able to get the cost covered.

January 2017: Results are in, two days after my 25th birthday - Its Limb Girdle Muscular Dystrophy type 2B.


This diagnosis sounds terrifying, but at least I have an official “thing” to call it. LGMD2B has no treatment, no cure, and gets worse over time. It impacts my leg and arm muscles for the most part, but I’ve also been having issues with my hands recently.


For some perspective, try these things:
Raise your arms above your head for more than five seconds.
While seated, lift your foot off the floor without bending your knee.
Then stand up without holding onto a chair or desk.
Then take three steps forward without holding onto anything.
Can you keep your balance after taking those three steps?
Because I can’t do any of those things due to my muscles being weak from irreparable damage.

I try to keep a positive outlook on things:
There are worse muscle issues out there.
I can still walk with assistance of a walker (though not very far).
I feel very grateful for my friends and family who support me. Most of them don’t hesitate to push me around in a wheelchair.
I love my job - especially since it now revolves around supporting our team members.

Thank you for reading.
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Organizer

Corey Paynter 
Organizer
Redford, MI
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