We've got some house remodelling addition coming up in a year or so - very much in the planning stages now.
I'd be really interested in people's tips/suggestions for things likely to make living with SCA easier, through its various stages.
I'm currently in the stage somewhere between "I don't know whether I'll inherit it from Mum or not" and "I think I probably have it". i.e. I'm having some experiences which I think might be symptoms, and I'm in the process of arranging appointments to check (my chiropractor says my Babinsky test is still normal). But regardless of whether I get confirmation now or not, I want to be sure that any changes I make to the house will work with, or be easily adjustable for, impaired mobility in the future.
1. I know to ensure any new doorways are 900mm (35") rather than the standard (for New Zealand) 810mm (32"). Even if I turn out not to have SCA, this will mean that if my Mum progresses to wheelchair use she'll still be able to get around the house easily when she's visiting.
2. We're putting in a new ensuite. Due to space limitations, I've made the choice that if the time comes that I need a wheelchair accessible bathroom, we'll adapt our current bathroom, and not worry about trying to make the new ensuite wheelchair compatible.
However, I wonder about the pre-wheelchair stage. I presume this will involve things like grab-rails in corridors. But I wonder whether some of the things which are good for wheelchairs - i.e. wide "drive through" spaces are in fact bad when you're still ambulatory - i.e. wide spaces with nothing to grab on to?
Anyway, would be interested in people's comments and experiences in this area.
I’m WAY into this/accessible design, etc. Because everyone and their needs are so different, it can help to have an OT or someone currently working with you/knows what your abilities are to evaluate what changes you need in order to get around…including now and later.
Thanks - if I have SCA I'm in such early stages that it wouldn't be noticeable to anyone else, I haven't yet been diagnosed, and don't have an OT yet. I don't currently need any modifications, but am thinking about the future and making sure what we build will be easily adaptable should the need arise.
I have a long skinny kitchen. I love it. Because I don't have to walk, with pots of water. I just have to turn. Other people bring the food to the dinning room.
We just finished a remodel. Wide doors, if at all possible I would put a zero entry shower floor. Retro fitting that is very complicated and costly. I think they look really cool too, for able bodied too. Be aware of flooring and trim and cabinet choices, our cabinets and trim are so scratched up from the wheelchair! It would be nice to have something more easily repaired that wood. Oh and a tall toilet so you never have to use those plastic risers! Plate type light switches, larger handles on shower/tub fixtures. Good luck!
I just remodeled our bathrooms. if their going to do some shower work hv them put grab bar reinforcements in the walls. get yr mom to advice u on grab bar locations. one advice; grab bars on all walls in the bathroom is good; one must be able to get to all walls (safely). most grab bars need to be middle of lower hand height. I assume u already hv a ramp for house entry. 35" doorways is good. higher seat commodes is good. most hospitals here (u.s.) hv got raised upside-down "u" shaped faucets for their sinks. also, faucet handles need to be handicap-friendly.
We renovated the master bath after getting my diagnosis of SCA type 8. I have not started to use a wheelchair so can’t help with that. Forgive the terminology – we live in the U.S. and it may differ in New Zealand.
No threshold shower. I don’t take my walker into the bathroom, but I find it is hard to lift my feet.
Safety bars in the shower. I can stand in the shower, but need to hold onto something.
Safety bench to eventually sit on. In the meantime, I pick up my legs to dry them without bending over.
Wand and showerhead. Eventually, my wife will use the showerhead and I’ll use the wand.
Comfort height toilet (a little higher) and a bar. I use the bar to stand up off the toilet. (Remember: I need to sit while I dress.)
Outlets in the bathroom. I have moved to an electric razor and toothbrush. I also have a motion sensor night light. (Tough to walk in the dark.)
Safety bars, depending on the geometry of your bathroom. You aways want to hold onto something when you walk.
Put an outlet in my office closet, so I could put a small frig and microwave in there.
Low slip tiles on the floor and shower floor in the bathroom.
We also had a friend come in and install other changes.
Replace some door knobs with lever door handles.
Put safety bars in strategic spots through the house, especially on the top of stairs of my multi-story house.
Replace some light fixtures with non-globe type, making it easier for my wife to replace light bulbs.
Outlets through the house. Recently, I found it hard to get out of a living room chair and am now waiting delivery on a lift chair.
In fact, it might help to check all the maintenance items and see if someone else can do them. Also, can you get out of the house with a walker? Do you need a ramp?
Thank you so much everyone - and how wonderful it is to wake up to such a great set of replies! Really valuable, both confirming what I suspected, but providing more detail, and making some points which seem obvious now but didn't occur to me before (e.g. motion sensor night lights, narrow kitchen, grab bar supports in the walls ready for when they're needed).
We currently have about 3 steps up to the front door, but the ground outside slopes from left to right, so when it's necessary we can move the front gate to the right and put in a flat walkway from there to the front door.
Based on your suggestions I'm thinking for the kitchen I'll put in an island bench, with the idea that it can be moved closer to the side bench in some years when I need a narrower space, and then if needed moved further out again later (and maybe lowered) to accommodate a wheelchair.
Also based on your suggestions I will put in a level-access (what the US call no threshold) shower even in the non-wheelchair bathroom, since it sounds like that's a safer arrangement.
And a comfort-height toilet?! I'd never heard of them before, but will definitely look them up now. I'll be looking to see whether it's just to do with height (if so, I imagine a wall-hung toilet could be hung higher...) or whether it has other features as well.
Also: thank you for sharing, for other reasons. It helps knowing there are a whole bunch of other people who have been through and are going through such adjustments, without the world coming to an end!
I definitely second the grab bars, in the bathroom and around the house. They're not that hard to install and they help tremendously. I also give a huge second to the narrow kitchen. You'll want to avoid walking or standings with knives, boiling water, etc, but if you have to do things yourself you'll need something to grab onto while you do dangerous things with your other hand. I wish I'd remembered a grab bar in my shower. Right now I just have one for the tub, which is awesome, but a shower one would be nice.
Sometimes you have to have stairs in your house, which is dangerous. I'd advise putting railings on both sides, and to give yourself something to hold onto if you're not walking, but scooting or climbing with hands and feet. This is not a stair climbing technique for audiences, but if you're alone and you have to do stairs it works great. It's also good to avoid putting things you need on the other side of the stairs, so if you're having a bad day you don't have to use them.
My ataxia has been in my family for over 200 years, and my ataxic granddad had stories of his ataxic grandmother nailing her rugs down so she wouldn't slip on them. I don't use rugs, just carpet and wood or vinyl tile. It's good to make sure walkways will be clear on the floor level with things to grab on the hand level. And it's important to imagine yourself breaking your a$$ on the floor in each room. Because you will. For that reason I'm covering the concrete in my basement with vinyl tile and I have no ceramic or other hard tile anywhere in my house.
If you remember to make things easy on yourself (if indeed you have an ataxia), your house can be a haven where you're more able than you are anywhere else. :)
Here’s a good article that covers the importance of UD, no matter what stage in life or level of ability and the use of bull-nose counters, up-front controls on appliances, etc.
Also, just a side note, for suction grab bars, it might depend on the brand. I took one on vacation, being much lighter than a more dependable, yet heavier screw-on-bathtub deal, and it lost suction from the wall in the shower - pretty much the most uncool place for it to happen.
I agree in general. However, my suction grab bar has performed brilliantly for about 6 mos. now. It is installed on a smooth surface of the fiberclass tub surround.
I am going to experiment with bathing shoes that I have for the beach.My ceramic tile floor in the downstairs walk-in shower is more slippery than the upstairs fiberglass tub with a shower mat under my feet.
I had a PT and an OT for a short time. What I really wanted was for them to show me how to arrange things and do things better for myself. They did not, unless I knew enough to ask specific questions. This discussion has been so beneficial. We have tall toilet, shower has replaced tub and doors that rollator and later wheel chair can go through. Daughter someday will help us re-do bathroom so I can get rollator in there. Now it is too narrow and I hang on to counter. Meantime i will have hubby add a grab bar in bathroom near closet and in walk-in clothes closet. Since I still try to cook some, the narrow kitchen has appeal.I'll have to consider that in rearranging mine. I have also decided that when we replace cabinets that more drawers on bottom would be better than doors. Or even shelves behind the doors that slide out. Also, places to sit and do some tasks are in order, whether it be sitting in a chair at a table, on the rollator, or in a wheel chair. I tried sitting on the rollator today to do something at the kitchen sink, It did not work. If it's possible a lower sink or one with a knee hole under it might be in order. Tacking rugs down or otherwise securing then is a good idea. We got ruggies for the one beside my bed. I haven't made them work yet. BTW, How do any of you manage to sweep,mop, or run the vacuum? I stagger around and use the broom to hold me up. Everything like that takes so much energy. AM thinking an electric broom would help on touch ups more often. A canister vac so I can sit on rollator and do it one section at a time might help. We will get rid of carpet soon, I hope, as I just can't vacuum it. I have ramp to get in/out back door. I learned the hard way to put my walker/rollator right next to the poster bed and lock the wheels. It took a fall to learn this.
I was looking for a specific link but couldn’t find it - my organization skills aren’t quite what they used to be, unfortunately; however, here are some others that you might find helpful:
(also, just FYI-you can do your own search in the search box above by the login link)
Thanks Glitter. It occurred to me late yesterday that this topic had probably been discussed before and I should have searched before I started a new link. So thanks for doing the work for me! I'll enjoy reading through those. Hopefully this thread has added some extras. And thanks everyone for taking the time to write.