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Ehlers-Danlos Syndrome Online Support Group

Overwhelmed and now time for a Wheeled mobility device

#1

EDS is not new to me but my mobility has become a huge hindrance to getting about in my community. I have been struggling to walk and I have used a cane for the past 15 years but it is not safe for me anymore on the bad days. I am trying to figure out the right choice for me anticipate my needs down the road. I am on my own with a smaller sedan that I go about town with. The ot has only complicated the issue because he is unfamiliar with EDS and it’s twists and turns. Some days I can go short distances walking but on the bad days even 20 ft can seem like 20 miles. I don’t use anything in the house but this pass winter I struggle with everything. My world is getting sorer and smaller. I don’t know what is the right choice for me. Giving up my car is non-negotiable. I want something to get out in the community and extend my energy but useable should need it at home. My EDS affects my hands, spine, si joints, hips, knees and ankles. The pain and nerve damage in my legs is something I need to get around. I want my independence. This is a huge expense especially with the 5 yr limitations of insurance. I want to make the right choice. I just don’t know if a manual chair with a power assist or scooter or travel electric wheelchair or a normal electric wheelchair is the best fit. I want to get out to street fairs, farmers market, go for a walk or to the local lake, shopping and camping but what is the best answer. These are all things I use to do and would like to enjoy once again. It needs to be light enough for transport on my own for the next phases of EDS. What have you used? and why did you choose it? If you recommend a particular device can you tell me the name and if certain products have made it easier. Even if you came across something unexpected.

#2

Hi there @JelloWobbles! I’m sorry that you’ve hit the point where you need more assistance. The more that you are able to continue living a full life, the better it will be for you. My guess is that a mobility scooter may wind up being the best fit for you. They come apart really easily. You may also want to consider a walker as opposed to a cane. I’m wondering if you can borrow or rent each, in order to try them out.

Sharon