How to prepare for what is to come

I am not sure who to talk to about this situation that will come up someday. Everyone who
does not have ataxia tells me not to worry about any upcoming problems until they actually show up. My problem is that I am hoping I have knowledge on this before it happens. What do I do when I will be in a wheel chair or stuck on a couch or bed. Unable to walk. What kind of places should I be checking into to help me and my family tend to my showers/toilet duties? I would feel better knowing what will help my family. My biggest fear is becoming a big burden for them. I don’t want to leave all of these problems for family to deal with. I like to know ahead to be prepared.
If anyone has info on this could you please let me know. It is a big concern for me. Thanks!

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I agree with them. Ataxia gives you whatever symptoms it wants and those symptoms progress at whatever rate it wants. Every ataxia for every person is different even within the same type.

I understand wanting to be prepared but nobody knows. All you can do is deal with the symptoms you do have. The future may or may not give you other symptoms. There is no way to predict what you may or may not have.

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I know exactly how you feel!

As much as I agree with the people who advise you to take it as it comes, I think it always pays to be prepared. I’ve been told that pilates can help with certain symptoms as it improves core strength - my Dad has some advanced symptoms and pilates might help, and even though I’ve got no symptoms yet I’ll be attending the pilates class with him to improve my core strength and perhaps slow down the progression of some symptoms.

I think it helps that I’ve become more involved in finding solutions for him, so I know what will help me later on down the line, and being actively involved in a support group has given me the opportunity to pool some resources.

Are there any ataxia support groups in your area? I’m sure they’d be able to answer a lot of questions for you! (There’s always the option to chat to the people in my group virtually if there’s nothing around you!)

I understand your concern Vickie as logistics rule my life. Just knowing what is expected of you helps to plan for the occasion.
However, life is never predictable so we just have to go with the flow.
All we can do is have a healthy diet, exercise regularly and pace ourselves to make time for periods of rest to recharge our batteries.
My biggest problem is restricting calories especially from sugar. My husband is always giving me sweet treats. We have small dinner plates and stick to portion control for main meals but treats just undo all our efforts. Stay safe, enjoy the atmosphere and dont forget to smile. :slight_smile:

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Hi Vickie🙂 I’m sure it’s fairly safe to say what you’re wondering has crossed most people’s minds at one time or another. On a bad day I ponder on it myself. You’re probably well aware of the unpredictability and progression of most types of ataxia, some specific genetic types have a more ‘predictable’ course but for most of us it’s a case of taking it day by day🙂 Facing challenges if and when the occasion arises.

It’s natural to want to feel prepared, to want to relieve family members of any future personal decisions on your behalf🙂 The practical measures that are troubling you will hopefully turn out to be more manageable than you anticipate🙂

Do you have a family doctor who knows you well, and you can confide in? It may help see things in a better perspective after having a heart to heart🤔 Right now, try to focus on enjoying time spent with your family, and of course your hobby Crafting😉xB

I try to learn all I can about progression of ataxia, then I buy things that I think will help or make things easier and have been told I only get worse because I am reading what happens and then it does eventually but slowly. But I am 82 and do most of the chores and work around the house. My wife has a hard time walking at even standing up from a chair, she cannot bend over to pick up something if she drops it most times. We have a small home with one bath and that is wonderful for the old and decrepit sometimes. I was thinking of having a neighbor come build me an outhouse but I think a better solution for me is to have a camping toilet in the garage. It is awful to have a BM in the back yard. So you have to think ahead on a lot of things and come up with some ideas to use.

:slightly_smiling_face: I’d really like to downsize, right away while I still have the energy (who am I kidding) and inclination to be less stressed by new surroundings. Unfortunately the housing market is still ‘in the doldrums’ where I live, so I don’t anticipate this happening anytime soon​:roll_eyes:

Thinking ahead, it would be possible to remodel our ground floor and create a bathroom, making it ideal to live on one level. But, with my husband already in his early 70s and still working full time (out of necessity) the large garden is also becoming a burden😏 We don’t want the added expense of having to pay for a gardener. And house maintenance is also expensive🙄

As I’ve grown older practical problems seem more pressing. Coping with this condition when younger didn’t give me the same anxieties, I was more concerned with the embarrassment of been seen using a walking stick🙄

With the best will in the world, it’s virtually impossible to be able to forecast what’s ahead, we can only do research and try to have some sort of workable plan in mind🙂 Coming to terms with change is much harder when growing older, but sometimes an unbiased opinion can cast a totally new light on the problem🤔xB

Some big problems can loom for the elderly and disabled I found out when the grass around the house got long and then died leaving a real fire hazard. I have pay about $400.00 every time I let the grass get long. I went out and bought a battery weed eater and a new lawnmower that electric starts. A life saver. I quit watering so the grass dies in the summer but that causes other problems. In the front yard I have been slowly pulling weeds and then used a propane torch to burn the grass in the driveway, it is neater but still a problem trying to keep up. I can only work for 5 or 10 minutes at a time or a day and it is hard to force myself to go out and work once in a while, it is like I have no drive sometimes. Jerry

:smirk:Jerry, I have to confess that ‘drive’ for me comes in 'fits and starts’:wink:( maybe a UK expression​:joy:).

I have lots of good intentions but easily get sidetracked😂
Someone once suggested I use a propane thingy to sort the weeds on block paving, I’m safer using a more basic tool😉

We’ve had lots of rain over the summer, the lawn has never really dried out and the lawnmower just sinks in some places🙄 If we ever are able to move, our next place will definitely have a much easier to deal with garden. It was the garden that actually led to us buying in the first place, my mother thought we were mad, obviously she was looking at it from a maintenance point of view, maybe we should have paid more attention😉

When we first moved here (about 18yrs ago) I had much more energy, and could happily spend hours at a time in the garden🙂 Inevitably this has decreased, and much like yourself I now find it more of a chore than a pleasure😕 But I try to do ‘bits and pieces’ to help my husband, he refuses to pay a gardener and would rather battle on himself😏

Ideally, we’d like just a nice patio (definitely laid properly to cut down on weeds), a few pots of shrubs and flowers and not much in the way of mature trees🙂 There are way too many mature trees where we are now, and it’s horrendously expensive to get a tree surgeon. Shortly after we moved in one of the trees fell into a neighbours garden, we tried to retrieve it from our side but eventually were forced to get an expert in🙄

Currently, I’m supposed to be spending time decluttering the house, just on the off chance that we’ll be able to downsize😉 But it’s easier said than done, sorting through possessions is very time consuming and you have to weigh up whether it’s best to keep something so that you don’t have to buy it again later🤔 And, you get so emotionally attached to the most ridiculous things, basically we are hoarders😂 But, not as bad as some you see on TV😂xB

This is something we all deal with. One of my blog posts (actually, most of them) focused on this globally. Let us know when you get good ideas.

Vickie its hard to predict but like you I don’t want to be a burden to my children. So I am doing some mental thinking about “doing what I can do now”. After 17 years my ataxia has actually improved in some areas–thankful. But last summer I fell and broke my arm and dislocated my shoulder. I couldn’t standup out of a chair without help for 4 days! I live alone. It was an eye opener about how unprepared I was. But my daughter & I figured out what I needed to help me move around alone, Medicare sent in physical therapy and occupational therapy 3x a week and someone to help me shower. My daughter had an employee benefit that provided in home care for 2 weeks for a sick parent or child but I didn’t need to use it. We decided I needed to eventually be living on one level without stairs and created some plans to make that happen down the road. Oh and I used Uber to go places. It was temporary but did help me begin to deal with getting older, not necessarily ataxia older, just stuff everyone should prepare for. I’m now getting my house in order to downsize eventually, and financials in order to make it easir for my kids should I break my neck next time I fall (joke). I fell yesterday and its painful but at least I’m moving around. That I’m grateful for.

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Vickie, we have all asked ourselves the same thing. Twenty one years ago I was told to get a wheelchair. Today I do use a walker, have downsized into a small apartment which I can clean and cook in. The best thing I have done is exercise almost each day - exercise of some kind-lifting weights, walking, taking classes - just keep moving. Also as you said prepare yourself by looking at helpful things on your internet and catalogues. Good Luck to you.

One thing you could do to prepare on what might come (or not) is to develop your interests and adapt them in a way that you could still pursue them without being very mobile. Like using the internet. Plans that involve a lot of travelling are best done straight away! So if you were planning on doing a journey around the world, make that a priority on your to do list. :slight_smile: If your fine movements, speech or eyesight tend to get affected you’ll need to think in a different direction. Happy contemplating!

Hi Vickie - Wish there were some good concise answers but ataxia is fickle. It creeps along or progresses with the speed of light. In our case, it was the later - but we were able to do a few things to make things easier for my husband along the way. We invested in a bunch of hand grips for the house and put them wherever he might need them, we invested in a second walker from Walmart ($100) - that had a padded seat and a nice basket that was easily accessible without having to lift the seat.(We called it his “dress” walker - it was really good looking and folks always asked him where we got it.) When his coordination became so bad that he had a hard time using the cell phone, we got him a DORO phone from Consumer Cellular that had big buttons and could be set up with his most frequently called numbers - we could even put the person’s face on the button so all he had to do was hit that one button. Best of all, it has an emergency button he could hit if he fell or needed help. Sure gave me peace of mind when I was away from him. We also found a group in our community that came in and helped us assess what structural modifications we would need if he became wheelchair bound (widening doorways, door grips, lowering the bed, etc.)Depending on one’s income, there are some social service organizations that will assist with the costs. Also, make sure to check with any elder affairs/senior support organizations in your area - they can be a Godsend and short circuit your homework. There was no ataxia support group in our area, but I was able to get some good information from the Parkinson’s and Multiple Sclerosis groups since they also deal with neuro movement disorders.

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When my husband and I bought our house, we purposefully got a smaller/cheaper home so that we could survive on one income if needed. There were a couple years where I could not work and hadn’t been approved for SSD yet, so that really paid off for us.

It’s good to make sure that your door openings are wide enough for a wheelchair and/or rollator. I don’t have any flooring in my house that I wouldn’t mind falling on. Vinyl only in the kitchen and bathroom- no tile. It really sucks to fall on concrete (I have, many times), so we need to finish our basement too. All of the stairs in/around our house go to places that are not necessary for me to be, so during bad times I don’t worry about stairs at all.

One of my cousins with ataxia had rails installed in her house so she could keep walking around alone. I thought that was brilliant. I intend to do the same when I get worse.

I don’t need one of these yet, but I want to eventually install one of those old people bathtubs where you just open the door and shuffle in, then can take a bath sitting down. Ahh!

Doing these little things for yourself as you’re able will help you feel better. You don’t want to have an aide in to help you get around or wash until that’s really necessary. Try to stay independent as long as you can!