A warm hello to all.
I feel this discussion as very worthwhile, very important.
The bottom line is: These decisions to go on further and to see what happens, or to not go on any further, are very individual choices.
I honestly do not know it's possible for us to accurately predict the future.
Researchers had told me to go to pick out a powered wheelchair 28 years ago.
I had refused to do so. They were shocked by my refusal. I had even been referred to a psychiatrist because the doctors had felt I was in deep denial. It was their opinion I would not be walking at all within 6-12 months.
I was told, yet again, to go immediately to pick out a powered wheelchair, by a totally different set of researchers, ten years ago. I had again refused to do so. I had gotten quite a lecture about my "non-compliance" and my "denial" about the seriousness of my medical conditions. One researcher became very upset with my "non-compliance" in securing a powered wheelchair. I am sure he was concerned for me. He became quite loud and had said, "I don't know that you will be walking at all within the next 6 months." I had replied, "With all due respect, we honestly do not know that about you, about me, or about anyone else in this room today." (Two interns had privately thanked me after the meeting.)
In truth, if I had needed a powered wheelchair at any point, I would have had to order one to go anywhere.
This isn't about denial or non-compliance, it's about not allowing others' (including the experts') predictions/expectations (nor research statistics) to pre-determine my present day experience and/or my future.
If/when I truly need a powered wheel chair, I will then look into obtaining one.
(In truth, I am getting closer to having to think about this now, 28 years later.)
I now intermittently use one crutch, when I need assistance walking.
I use a wheelchair in airports (and/or in very large hospitals) when I cannot otherwise cover the distance or make my flight connection on time when in an exacerbation of pain/limitations.
My DH had asked me if I might want to start looking at powered mobility aids earlier this summer. He had a very serious look on his face as he brought me some of his research on various products. I had thanked him and told him I would review his research and would make a list of what I perceive to be viable options. We sat down to discuss this two evenings later. I thanked him for his concern and for his efforts. I then showed him my list. I had included a variety of options, contingent upon on the budget. I had found some very nice options locally: a customized Harley, a very sharp BMW, an awesome Honda Shadow (low-rider just like the one I used to have) and a Cam-Am Spyder.
And so it goes.
Honestly, I will deal with adding to my mobility aids if/when I truly need to do so.
I have had 5 friends diagnosed with ALS. Two were misdiagnosed. Three were accurately diagnosed. One of these three followed the rapid progression type of course. The other two, 6 and 8 years later are living life with some effects upon them, yet still work, etc. All five were told they had approximately 3 years to live. Those expectations were erroneous for 4 out of 5 in this one account, and erroneous for 2 of the 3 properly/accurately diagnosed.
My point: I honestly do not think we (nor anyone else) can 100% accurately predict our individual futures.
Love to All,
DejaVu
P.S. I have had many awesome years of a deeply enriched life over the past 30+ years of medical disability. I had married 10 years into these challenges. Life was not over for me, despite what I was told by the "experts." Life had drastically changed, for sure. In some ways, life had just begun. It's been a very real and a demanding challenge much of the time. I have felt like quitting at times. Yet, I have also grown in so many ways.
I do not know how this will turn out. I try to stay focused on the "Present Moment." In the end, I know I have done my best and that's truly the most each of us can do.