I’ve been dealing with quite a bit lately, a lot having to do with ALS and some issues totally separate. When you have ALS, it can consume your life with symptoms, adaptions, planning ahead, money issues. The list is endless. At the same time life is still happening outside of ALS and even a healthy person’s life is not all rainbows and butterflies all the time, tragedy can strike a person or family at any time. You have to face it ALS or not.
With that being said, I want to share great news with you and focus on something positive. For a while now walking has become progressively worse. I can still get around some with help of a walker and my AFO. In my opinion I’m still lucky because only one leg, my right, is very weak and has lost a lot of muscle. With my left leg being stronger it’s very helpful with transferring, I call it twirling. I get positioned and holding on to something or someone I twirl on my left foot to whatever I’m moving to. If both legs were as strong as the left, I would probably still be getting around with my rollator. It just doesn’t work out and is a hazard. I can’t go out and walk, it wouldn’t be long before I would be leaning on my walker and using upper body strength to make up for my right leg. It wears me out fast and It uses a lot of muscle strength in stronger muscles. As we with ALS know this results in those muscles atrophying and we want to keep all we have as long possible because we don’t get it back, and we certainly don’t need a fall injury. So getting out has been an ordeal for a while using a transfer chair, for who I’m with getting it in and out of the trunk and then I’m dependent on them pushing me.
The great news is we finally have been able to purchase a wheelchair accessible van! It’s so wonderful to drive out of my home and into the van and leave. Then I can drive out and independently go the direction I choose. This is so important not only for convenience but also emotionally. I have some independence back. Leaving home isn’t the dreaded experience it was.
The donations received on the gofundme.com website that Tony set up was a huge help to us getting this van. Every donation, no matter how small or large meant so much. With the kindness of everyone who donated we were able to purchase a van that we are very happy with. No it’s not brand new, it has high miles and it’s a decade old but that doesn’t matter to me. It’s in great condition and certainly able to make long trips, The place we bought it from, our local Mobility Works dealership, made sure we had what we need and wanted in our van. They even had new shocks and struts put on and placed the EZ lock system in the van and the locking pin underneath my power wheelchair at no additional cost. The entrance/exit ramp is side entry and fully automatic. That’s a feature we wanted, especially for times when my Mother is driving me, she wont have to deal with pulling a ramp out and risking her back. I also get to ride shotgun. I was willing to sacrifice that but that’s my spot and I’m happy it worked out. It rides smooth and when I look at it I don’t see an older model van, but I don’t keep up body styles of vans, I certainly thought my mini-van days were long over with the kids grown.
I’m very happy with it and I want everyone to know how much Tony and I appreciate everyone who donated and shared the page. It all helped make the purchase possible. Thank you all so much!
A couple of pictures so you know where your help went:
This of course makes our trips to Emory less stressful as well not having to use the transfer chair. The smallest things add up. At valet parking we don’t have to hold up the line by taking time to get the chair from the trunk and me twirl on it. On days we go to several different areas for tests, Tony is free from pushing me and I have the freedom to be on either side, front, behind him or to stop for a second to look at a pretty sitting area outdoors. I’ll admit to liking the thought that if I’m ever really frustrated with him, I can roll on over to the other side of a waiting room if I so choose, although I don’t think that will happen, I have the ability. It may not seem like much, but it is a lot to me.
We will be going to Emory next month for some much awaited tests and it’s always nice to see the people we’ve come to know because of my participation in the stem cell study and other’s I’ve participated in. I’m not sure exactly when the results will be published or first mentioned but I do know this study is moving faster than phase I with less waiting for results. Something exciting for all of us to look forward to!
I mainly wanted to express my gratitude and excitement over the van. Thank you all again for the support in any way, money or share, even the private thought of hope for me get one. I will pay it forward in any way I can for others.
Thanks for reading. Until next time, take care.
This article was written by April