I would like your opinion on the following.
I have MS since 1999 (offcial diagnosis 2002). Only minor relapses until January 2008: since then progressing fast. Strangly enough no progression visible on MRI's, only clinical progression. Strangely enough, I am still in RR phase, although my EDSS score is 6-6,5 (self assessed).
I can still walk (slowly), but use wheelchair more and more. For instance at the office, as it is easier for me to move around in a wheelchair then using a stroller. Presently, we are developing rebuilding plans for our home to make our home totally wheelchair accesible.
I showed this plan to my ergotherapist (That's the Dutch name for it, I don't know if that is the name you use in the States. She advises on how to use mobility aids, the way to move through the house etc. She is not a fysiotherapist).
Anyways, she liked our plan, but said the plan heavily leaned on the assumption that I can use the stairlift for a long time, i.e. I can still make the transfer from a wheelchair to the chair of the stairlift and upstairs to another wheelchair again. Upstairs we are planning a complete adapted bathroom (handicapped bathroom) and I am planning to still sleep upstairs. So the lift is a necessary thing.
It is very difficult for me to imagine how my MS will progress over time, and I know it is different for everyone. Still, I would like your opinion based on experience.
How does it work when you are completely wheelchairbound? Are you still able to make transfers from chair to wheelchair? How do you get in and out of bed, to the bathroom etc?
When came the point that you were not able to make those transfers anymore? What were the solutions then?
I don't know if I have asked the right questions, so please think for me here. I need to make a decission on rebuilding our home suitable for the "worst case scenario" and find it very difficult to imagine how things are going to be.
Thanks in advance for your help.
PS. It is not easy to fit a houselift in the plan, that's the bottleneck. So I either need to go upstairs using the stairs, or make a bed downstairs. The latter is not a preferred option as I have growing sons at home.