One thing that has become very clear during my ALS journey is just how many incredible nonprofits, organizations, and resources exist to support people with disabilities. There are countless people dedicating their time, energy, and resources to helping others, and for that, I am incredibly grateful.
At the same time, I’ve learned that obtaining the equipment and assistance you need can sometimes be a challenging and expensive process. Maybe “difficult” isn’t the right word. A better way to describe it is that every organization has its own process, and some are much easier to navigate than others.
Case in point: I currently have a power wheelchair, but I don’t use it very often yet because I can still walk. My walking distance, however, is limited. On a good day, I can probably make it about 50 yards before I need to stop. For most outings, I use a manual wheelchair, but unfortunately, the standard wheelchair I have doesn’t fit me well.
As many of you know, I’m 6’3” with a longer torso, and most standard wheelchairs are designed for people with medium-sized builds or smaller. What sounds like a simple problem has turned into quite the search.
Over the past several weeks, I’ve contacted more than 15 organizations looking for a properly fitted wheelchair. I’ve posted in ALS Facebook groups, searched Facebook Marketplace, browsed OfferUp and other online resources, and even reached out through the Nextdoor app. So far, no luck. Finding a wheelchair designed for a taller person for less than $2,000 has proven much more difficult than I ever imagined.
The good news is that I finally connected with an organization that provides temporary loaner wheelchairs. They have been incredibly helpful and are currently searching high and low for a chair that will fit my frame. I’m keeping my fingers crossed and hoping they can come through.
In the meantime, another challenge we’re tackling is finding a wheelchair-accessible van that can transport my power wheelchair, which probably weighs close to 700 pounds. As many families dealing with mobility issues already know, wheelchair-accessible vans are expensive—very expensive—even when purchased used.
If anyone in our Team Frosty community has a lead on a reliable wheelchair-accessible van, I would love to hear from you. Please reach out. Sometimes the best resources come from people who have already walked this path.
As always, we remain hopeful, determined, and grateful for the support of our incredible village.
Also, stay tuned! We have an exciting announcement coming soon regarding the Frosty Olympics, along with a potential new event we are considering for Teen Frosty. We can’t wait to share more details.
Until next time, stay Frosty, and I hope to see you all soon!
— Frosty