This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello all,

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.

Inge

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.

Hi Inge;

Sorry to hear you are going downward; I experimeted it before and it is very disappointing. Dx in 1998 but starting to really spiral down in 2005 - now 8-8.5 EDSs; bed to wheelchair to bed. Fortunately I could afford an electric W/C. I had to move to a flat apartment.
Transfer to bathtub is impossible without a crane. my wife can help to go to a convenience chair (toilet) and to go to bed seep. I wear diappers all day and night since I dont feel anymore the need to go to toilets. It just 'drip'.

I hope you will not end there, but be prepared to the worse...

Contact me anytime pm if you need details,

Good luck

Inge,

My wife had MS for some 35 years before she passed away in 2007. As she slowly started to become more and more disabled, we had to adapt the house we lived in at the time more and more to cope with her added mobility problems.

There comes a time when some big decisions have to be made as to what direction you are going to take for the adaptations that are required. You are so right in trying to think ahead as to what you may need a few years down the line and incorporating that into your plans. That is exactly what happened to us.

There becomes a point when trying to make changes in your current home is not the way to go. Believe me, you end up spending a lot of money for "patch job" solutions which only buy you a couple of years if not months of time that allow you get around in your own house. My wife and I finally decided that moving and building a new home was the way to go and it gave my wife another 5 years of quality life prior to her passing away. You can do things in a new home that are simply not possible in trying to renovate.

For example, we had "pocket doors" installed in the new home They slide into the wall and are much easier to open and close for someone in a wheelchair. They also save space in each room.

We had a shower installed that was exactly the same level as the floor in the bathroom. This allowed a shower chair to easily move into and out of the shower. All wall light switches were installed slightly lower than normal and all plugs slight higher allowing easier access from a wheel-chair.

The kitchen had a separate lower counter with a bar sink that allowed my wife to perform some kitchen work from her wheel-chair. The microwave was placed below the counter, not above.

The main idea we had was to make the floor in the garage the same as the main floor level in the house. But the survey engineers made a horrible mistake and it wasn't noticed until the concrete foundations had been poured. They had to install an elevator (at their expense) to fix this so we now had access to the basement as well which wasn't in the original plans. I'm sure the engineer who did the survey was fired after that mistake !!

I would also suggest that you talk with what we call a occupational therapist in North America. They can assess your situation and help you with your decision making, regardless of whether you stay in your current home or decide to have a new home built.

And please feel free to contact me whenever for any ideas that you may want to discuss. I went through several years of renovations to try and make things as best as possible for my wife and have a lot of experience in this area. I would only be too glad to help.

Harry

Thank you both for your kind replies.

After reading Harry's reply, I am confident that we are working in the right direction. Fortunately, we are able to renovate our house with features such as a high/low kitchen, removing thresholds, adapted bathrooms etc.

The only thing what was not thought out properly is what would happen if I am not able to make a transfer from a wheelchair to another chair.

After serious googling I found several solutions for that problem: a lift that takes you up while you are sitting in your wheelchair, an aid that can lift you from your wheelchair into another chair (or bed). etc.

So things are looking less dark than they seemed this weekend.

Luckily we are in the position to being able to pay for al these things. Now we hope for stabilization (am am a fanatic follower of the ccsvi forum). You never know...

Thanks again for your help.

Inge