Stairs and Help. Update in general?

[jjs]

I just want to share for my future reference. A week ago my family moved me out of my apartment above the garage and made a temporary place for me in the main house master bedroom. I had been living in the apartment for about a year and LOVED IT so much. The view was beautiful (we live in the country) and I liked being elevated like that. The size was perfect. The only problem was the stairs. I knew I was having a very hard time with them - not just the physical act of walking up, but also going down was quite dangerous. I've spoke of this before.

Anyway, I am not sure if this is a fluke or not, but my poor right leg has been not "as bad" by the end of the day as it usually is. It *seems* like I am not dragging it as much, not tripping over it as much, and so on. Though I cannot walk any further and I still have obvious issues, it just seems a little bit better. My theory is that I was spending way too much of my energy on the stairs and now it's free to be used somewhere else. I'm serious when I say this: at least a few times a day I thought, "There's no way I'm making it up those stairs." I have even had to stop myself from shedding a few tears at the thought of the huge mountain in front of me. I am SO THANKFUL to not have to face that any more. And I have since discovered that the view out the big window in the master bedroom is just as lovely as the view upstairs I originally thought the exercise of going up and down the stairs was going to be good for me, however now I am sure it wasn't.

Side note: we've thought of a stair lift chair, however the stairwell is narrower than normal and we're not sure that will work. We are checking in to it for future reference.

A negative: the kitchen in the main house is so nice and big (big to me, anyway). I'm still learning where to put my things so I'm not making 20 trips here and there each time I do something in the kitchen. It's hard to get it set up right.

And the "help" part: My daughter and her little family have just moved in to my former apartment. This is also temporary. She has been helping me with things around here, so I have had a lot less to do ... which wasn't much to begin with. For the last 3 evenings I have walked up the stairs (only once the whole day), ate supper, and then came back down to my house. No cooking, no cleaning. Wow. Cooking used to be my thing. I loved it. I miss doing it - or at least I thought I missed doing it. Reality check - it's just too much for me. Now that I know what it feels like, I have really enjoyed not having to worry about what I'm going to make, if I'll be able to make it, will it wear me out, cleaning up, etc.

This is our arrangement for now. We are considering our options for the near future. I am still not sure if I have been approved for medicaid for disabled. Waiting. In the mean time, I just went ahead and contacted my original neurologist at the hospital that had the really good financial aid program. I told her I wanted to see her again. She emailed back and said I really need to just see an MS specialist. That hospital has only one MS specialist, so I hope he's a good one!!! Maybe someone knows about this: he is not accepting any new patients, however he is the doctor over the resident clinic. So, a resident will see me and the MS specialist will be there with the resident and me the whole time. Basically, I'll be seen by two doctors at once - a new guy and a long-time (4 decades and counting) MS specialist. Does anyone have experience with this? My appointment is September, 12, but if I get approved for medicaid in the mean time, I might just go to the more popular MS specialist in St Louis. We'll see.

Rambling done.

[MyGirlsMom]

Thanks for sharing! I especially appreciated your comments on the stairs. We have a two story house and I think the stairs are “good” for me but after reading your thread, perhaps they wear me out more than I realize. I have had times where I wonder can I get up or down them....and I look at ranch homes all the time. But have made that move yet. Partly because the girls don’t want us to move/sellcthe house and the RE Market is crazy expensive in my metro area right now.
Best to you!

[Mamabug]

Yes; thanks for sharing. I mostly avoid our basement stairs because of the effort they require. They are slightly more steep than most stairs and they require a lot of effort. I've wondered, as you did, if using stairs more frequently would be good for me. However, maybe, as you discovered, it might not be.

[502E79]

Hi jjs,

I can only comment on the stair issue. Agreeing that the leg might not seem to drag as much since you eliminated the daily trips up & down.

However the PT involved in lifting both legs the 8" height of a normal step on a daily basis should not be overlooked. Muscles not used, although a relief at first, will quickly be come a problem.

Even if you lift the right leg up the one step, then the left, then reverse each down & repeat 8-10 times. , so as to avoid "climbing" the entire staircase. This will give the muscles daily effort. I urge you to adapt a routine that includes a variety of PT. Some activity, however limited, is always better.

Pretty sure you know this already with an extra decade or two dealing with this "thief" of an disease.

Jer

Ps, An accolade to your mother & father lovingly sacrificing their master for you and their apartment for their granddaughter's family!

[jjs]

Thanks for sharing! I especially appreciated your comments on the stairs. We have a two story house and I think the stairs are “good” for me but after reading your thread, perhaps they wear me out more than I realize. I have had times where I wonder can I get up or down them....and I look at ranch homes all the time. But have made that move yet. Partly because the girls don’t want us to move/sellcthe house and the RE Market is crazy expensive in my metro area right now.
Best to you!

You might consider looking in to a chair lift for the stairs. I have been watching craigslist for several months now and have seen at least 4 on there in my general area (within an hour in any direction). Also, I know many folks with MS handle stairs just fine as exercise ... so it might actually be ok for you??? I'm sure it's a case-by-case basis, just like everything else in this complicated disease!

[jjs]

Hi jjs,

I can only comment on the stair issue. Agreeing that the leg might not seem to drag as much since you eliminated the daily trips up & down.

However the PT involved in lifting both legs the 8" height of a normal step on a daily basis should not be overlooked. Muscles not used, although a relief at first, will quickly be come a problem.

Even if you lift the right leg up the one step, then the left, then reverse each down & repeat 8-10 times. , so as to avoid "climbing" the entire staircase. This will give the muscles daily effort. I urge you to adapt a routine that includes a variety of PT. Some activity, however limited, is always better.

Pretty sure you know this already with an extra decade or two dealing with this "thief" of an disease.

Jer

Ps, An accolade to your mother & father lovingly sacrificing their master for you and their apartment for their granddaughter's family!

Thanks for the encouragement!!! I will definitely check in to PT. I'm seeing a new neuro soon and plan to talk to him about PT and OT. I want to do all I can to prevent or hinder or slow the deterioration of my muscles.

As for the PS - it threw me off a little ... the mother and father comment It's actually my youngest son. He owns this property. He is not married yet, but it's in the works for some time in the "near" future. I'm living here until my children (son-in-law included) and my good friend find a better solution for me. That might mean they build me a small one story house on this property, or it might mean me moving somewhere else. It could even mean just installing a chair lift for the stairs to the apartment above the garage. We'll see. I'm just thankful I do not have to worry about any of it. That stress is not mine and I know I'm well taken care of

[jjs]

Yes; thanks for sharing. I mostly avoid our basement stairs because of the effort they require. They are slightly more steep than most stairs and they require a lot of effort. I've wondered, as you did, if using stairs more frequently would be good for me. However, maybe, as you discovered, it might not be.

You never know until you try! But I know you know that! One time we visited a family with the most terrible stairs I've ever used. They had a few bedrooms in an upstairs attic and the steps were a death trap. I had to crawl up them and to go down I just had my good friend walk slowly in front of me and I leaned on him. We do what we have to!!!

[Myoak]

This may not be feasible but just in case...

Steps which rise only 6 inches each are so much easier to climb. The degree of difficulty between a rise of 6" and 7" is pretty remarkable, IMO. 7 and three-quarter inches is about as high as steps rise and steps that high are a pain to climb for many people.

I designed and built the stairs in my house with more gentle steps to make it easier in old age or with disability. I used a 6 inch rise, rather than the standard 7 inch. Doing so requires more space, or length for the stairway because of more steps, obviously. It requires more space and many existing homes may not be able to accommodate a longer stairway. But some may. Starting with a clean sheet, I designed and built my home to accommodate the stairs I thought I might need in the future.

If you rebuilt your stairs you would want to measure the total height and calculate the number of steps required for a 6 inch rise, or thereabouts. Adjust the rise to 6 1/8", 6 1/4", or whatever rise is needed to make your steps identical in rise for the height from the lower level to the upper level. Usually, there is 11 inches of run, or horizontal distance for each step. The stairs in my house is much easier to climb than most because of the 6 inch rise and 11 inch run.

It's no job for an amateur but a good handyman might be able to plan and build such a stairway for an apartment above a garage. Reducing the height of each step requires a couple additional steps. Such a project could be quite challenging in an existing home. Lengthening the horizontal distance necessary by adding two steps would be nearly two feet because there is normally 11 inches of run for each. Doesn't sound like much but it is. You really need someone capable building it or you will have a mess.

Also, I made my steps 44" wide but again, more space is taken up with wider steps. I wanted plenty of room for a stairlift and room to carry things, or move furniture when needed. 36" wide steps are typical and stairlifts are designed for narrow stairs. Wider is only a convenience, not a necessity.

I watched Craig's list for about a year until I found the exact stairlift I wanted... a Pinnacle. IMO, they are one of the best. They take up the least room, they are superbly dependable, they have a worm gear drive which is positively the best, IMO. No cables, no lubricants, extremely simple and compact track and drive mechanism, and they are quite durable.

Most handymen could install a straight run stairlift without too much difficulty. I removed one in 3 hours and took about 4 hours to install it. I built my own home so I may be more familiar doing something like that. It may take longer than 4 hours to install for many but who cares? It's not a race.

If you but a used stairlift make sure you get one facing the correct way in your stairway; they mount on the left side or on the right side. It just makes installation go that much easier. If you are going to put it on the left side of your stairs buy one that was installed on the left side. Make it easy on yourself! You can find one for either side if you are patient.

[jjs]

This may not be feasible but just in case...

Steps which rise only 6 inches each are so much easier to climb. The degree of difficulty between a rise of 6" and 7" is pretty remarkable, IMO. 7 and three-quarter inches is about as high as steps rise and steps that high are a pain to climb for many people.

I designed and built the stairs in my house with more gentle steps to make it easier in old age or with disability. I used a 6 inch rise, rather than the standard 7 inch. Doing so requires more space, or length for the stairway because of more steps, obviously. It requires more space and many existing homes may not be able to accommodate a longer stairway. But some may. Starting with a clean sheet, I designed and built my home to accommodate the stairs I thought I might need in the future.

If you rebuilt your stairs you would want to measure the total height and calculate the number of steps required for a 6 inch rise, or thereabouts. Adjust the rise to 6 1/8", 6 1/4", or whatever rise is needed to make your steps identical in rise for the height from the lower level to the upper level. Usually, there is 11 inches of run, or horizontal distance for each step. The stairs in my house is much easier to climb than most because of the 6 inch rise and 11 inch run.

It's no job for an amateur but a good handyman might be able to plan and build such a stairway for an apartment above a garage. Reducing the height of each step requires a couple additional steps. Such a project could be quite challenging in an existing home. Lengthening the horizontal distance necessary by adding two steps would be nearly two feet because there is normally 11 inches of run for each. Doesn't sound like much but it is. You really need someone capable building it or you will have a mess.

Also, I made my steps 44" wide but again, more space is taken up with wider steps. I wanted plenty of room for a stairlift and room to carry things, or move furniture when needed. 36" wide steps are typical and stairlifts are designed for narrow stairs. Wider is only a convenience, not a necessity.

I watched Craig's list for about a year until I found the exact stairlift I wanted... a Pinnacle. IMO, they are one of the best. They take up the least room, they are superbly dependable, they have a worm gear drive which is positively the best, IMO. No cables, no lubricants, extremely simple and compact track and drive mechanism, and they are quite durable.

Most handymen could install a straight run stairlift without too much difficulty. I removed one in 3 hours and took about 4 hours to install it. I built my own home so I may be more familiar doing something like that. It may take longer than 4 hours to install for many but who cares? It's not a race.

If you but a used stairlift make sure you get one facing the correct way in your stairway; they mount on the left side or on the right side. It just makes installation go that much easier. If you are going to put it on the left side of your stairs buy one that was installed on the left side. Make it easy on yourself! You can find one for either side if you are patient.

Thank you for the stairlift brand recommendation!! I am clueless, so that really helps.

If the stairs are too narrow for the lift, I just remembered we had a plan B - a homemade elevator added to the back of the garage. You'd park in the garage, and the elevator would take you up to the apartment at the living/kitchen area. My sons and the men at our fellowship can build anything and one if the men already has an idea for the elevator - making it out of garage door parts [he's been in the garage door business for a long time].

My youngest would have no problem building the stairs - but the existing place would not work. He could, however, build them on the outside of the garage/apartment. We were going to do that anyway - they'd lead to a deck at the kitchen/living area.

Thanks again!

[CindyW]

... he is the doctor over the resident clinic. So, a resident will see me and the MS specialist will be there with the resident and me the whole time. Basically, I'll be seen by two doctors at once - a new guy and a long-time (4 decades and counting) MS specialist. Does anyone have experience with this? My appointment is September, 12, but if I get approved for medicaid in the mean time, I might just go to the more popular MS specialist in St Louis. We'll see.

Rambling done.

Hi jjs,

I'm a little late to this thread, but I work in a teaching hospital and their most affordable health plan has me receiving all of my medical care there.

When residents are involved, they often spend more time with you than faculty by themselves do. The appointments might take longer but you will get excellent care. Even if you don't see the attending did at every visit they will be available to the residents to answer their questions and approve drug choices, etc.

You will get state-of-the-art care.

I hope your appointment goes well.

[jjs]

Hi jjs,

I'm a little late to this thread, but I work in a teaching hospital and their most affordable health plan has me receiving all of my medical care there.

When residents are involved, they often spend more time with you than faculty by themselves do. The appointments might take longer but you will get excellent care. Even if you don't see the attending did at every visit they will be available to the residents to answer their questions and approve drug choices, etc.

You will get state-of-the-art care.

I hope your appointment goes well.

Not too late ... my appointment is TOMORROW!! (wednesday) Thanks for the comment - I was actually thinking the same thing, so it helped to have someone more "in the know" say it. They did say the attending doctor will be there the whole time - that was why we did it this way (their suggestion). He is the MS specialist for that hospital and this was the only way he could see a new patient. I'm so ready to get this over with!

Thanks again!