Am I giving up? I started going to church in a wheelchair today. I have had the chair for a couple of weeks, but I have not used it for church for a couple of reasons, I didn’t want to deal with the sympathetic stares or the questioning looks from people much too polite to stop and ask why. But, most of all, I feel like I’m giving up.

I was diagnosed with SBMA two years ago. Six months later, I was using a cane. I have only had once significant fall a month or two ago, but walking has become more and more difficult (as have other things) and shopping in large stores like Walmart and Kroger are always done with one of their scooters/basket things. The one place I walked a lot was church. I spend three hours at church on Sunday. Our building is on the side of a hill, to enter at the side entrances (closest to the chapel), you have to go up or down stairs. The handicap parking is at the back of the building. So, every Sunday, I park in the back then walk the length of building to the Chapel. Then after sacrament meeting, I walk the length of the building to the Sunday School class I teach at the back of the building. After Sunday School, I walk the length of building back to chapel for Priesthood Opening Exercises, then walk the length of the building again, climb some stairs up to the stage for Elder’s Quorum, then go home. Needless to say, I come home every Sunday exhausted.

So today my son pushed me into the building in a manual wheelchair and I came home feeling great! Except for one thing, I feel like I am giving up. By not, walking will the legs atrophy more? And even faster? Even though I was physically exhausted every week, I did it. So, am I quitter for using the chair? Shouldn’t I man up and walk until I at least fall once? My head tells me no, that I am not giving up or being a wimp. But, my ego says I am now less of a man and a bigger wimp.

Thanks for listening, just needed to vent.

Been there done that.... Being that SBMA is progressive most of us have gone/will go through the phase you described. You may as well tackle it sooner rather than later. There is no need to overextend yourself to avoid being embarrassed about your difficulties.

I used an indoor sized powerchair and a lift mount in a mini-van for this first phase. I was able to walk/balance enough to operate the lift. I graduated to a slightly large outdoor powerchair after a while (you can most likely find reasonably priced used chairs if you look around a bit.) Getting the outdoor chair was a real boost as I could now get around outside a lot better as the smaller chair was just good for single stops as you mentioned at big box type stores. With the larger chair I could visit my old haunts (library, food joints, coffee shops, book stores, etc.) scattered around downtown. At the start of this phase I could still walk 100 yards or so but as you noted I was tapped out after that. With the chair I still had reserves for other things. Another benefit of the powerchairs is you don't have to worry about finding seating at your destination you can get up from.

After a while I couldn't manage the lift, and my walking distance decreased, so I switched to a lower floor van w/ramp and a powerchair I could drive from. Again both used but expensive and good investments as far as I'm concerned as they extended the time I can work.

I am blessed to have a great local provider for adapted vehicles. He also sells scooters and powerchairs (new and used) and is a good mechanic. I had him add 3" to the height of my Jazzy 1103 power seat to make my transfers easier. (I have one indoor chair and one outdoor/van adapted chair.) I recommend you check out all the providers in your area and establish a relationship early. In general I've found the people in this business to be very helpful and dedicated. I'd recommend against the national providers - a good local resource is critical.

Good luck!

Jim, what is inspiration? What is it that inspired our leaders, our heroes, our saviours? Was it something grandiose that made the world look and admire or just a small task that inspired others to do more, even if it seemed ordinary. An ability lost is one more appreciated; an ability used to the nth degree and then lost is inspirational, very inspirational.

I see you in my minds eye walking around church as you have described and definitely admire your tenacity and will to walk. You have traversed and transcended to what is the next challenge with all the graces that were bestowed within you. With all that is humble, all will be re-cast. You are an inspiration to all around you, especially to the son that pushed the wheel-chair.

I am still able to walk and take inspiration from the stories that mother told me about my grandfather walking 20 miles in the winter with a sled to go to town and get groceries for the family. I now have two inspirational experiences to draw from.

Thanks Jim


Dan.

Jim, we have all been there. I have been through denial, anger and now acceptance. My life has changed now that I accept who I am and that I have an illness which prevents me from doing things that I did when I was more able. I cant walk very far, 50 to 100 meters, and even then I sometimes fall. I too put off getting a wheelchair because I thought it would be giving up but I risked becoming a recluse. I didn't go out because I couldn't, I stressed those who loved me because I refused assistance etc. My world has expanded now that I have a power wheelchair and a small dog which demands walks. I visit the park once or twice each day, I visit the cinima and theatres, I shop independently, I talk to people again and feel like I am regaining my life. I was concerned about missing out on exercise so I visit a seniors gym session a couple of times a week and also participate in water aerobics when I can. Jim, my advice is to use whatever assistance you need. Life is hard enough without unnecessary challenges.

Jim, you always seem to ask excellent questions. I wrote about this concern in my Living with Kennedy's Disease blog Giving up or Giving In. As I wrote in other posts, I was the hardheaded guy that never wanted to give in. Because of that, I have more injuries (some serious) than the average KD'r and that is not a bad anyone should proudly wear.

As mentioned above, acceptance is part of this growth process. I remember some movie that the hero said something like "... I will live to fight another day." If you become injured because of a fall, you will second guess yourself for months. It just is not worth it. I mentioned in one post that "Safety is Job #1" for me these days. I recommend it for all of ut.

Reference will the muscles waste quicker; not necessarily. Become involved in a smart exercise program and you will be far better off. I am stronger today than I was two years ago.

Thank you all for your comments and advice. I know that what I am going through right now is what Bruce calls a "slide" and I get frustrated with myself, because I think I have accepted KD. I think I have made peace with it, then I lose some ability that I have previously had and have to make some new adaption in my life and it all goes out the window. I fall back into depression and frustration and have to work through the acceptance process all over again.

But it is great to have this forum and the advice of caring brothers. Thank you.

BTW Bruce, I follow your blog faithfully.

Thanks Jim. I appreciate your readership.

This coming Sunday's article will be on the "Natural History of Spinal and Bulbar Muscular Atrophy." I found the research paper most interesting and it helped answer some questions that have been lingering for some time.

Living with Kennedy's Disease
Bruce