Sometimes, I’m unsure of how my day will begin or end. I often saddened by the issues of dealing with ataxia on an ongoing basis. I see that I need help more and more each and everyday. I feel that I lost most of my independence and this makes me depressed. Crying is the only way that I can get through these times in my life.
Aw Timothy - I do feel for you. When I am on the computer, I feel really confident - probably because I have been typing for over 50 years and feel at home. I can express myself on the keyboard and it’s so much easier than speaking - wouldnt it be great if in real life, you could delete words and try again!!
I do find it easier to keep to a routine as much as possible and get quite nervous about time away from home. Funnily enough, when I go out, I cope better on my own than when I am with my husband - must be a psychological thing there.
The greatest thing I did was to have hand controls fitted to my car - that has maintained my independence for getting about and I can now continue to visit my little grandchildren.
I hope that you will find comfort in using this forum - all good wishes, Patsy/CA/66/Ipswich
It is hard, as you cant plan anything as you have no idea how you are going to be on the day.
I personally found that researching types of gadgets helps me as I can find out what might work for different stages along the way and then know where to get them form and how much I need to save up etc. It helps me feel I am doing something positive about my situation.
I’m not sure how fast your ataxia is progressing but I use wheelchair most of time and am still managing independently in an adapted house. I have adaptions to computer though even with those its not always easy.
At moment I’m having some weighted wristbands made by a company who make gripping aids for quadriplegics and hoping they will steady my arms a bit more to enable me to manage controlling the cursor a bit better. I can still hit keys on keyboard luckily so use keyguards, word prediction and abbreviation-expansion on computer and lightwriter communication aid to assist typing.
My gross motor skills are ok and I do exercises everyday to keep my arms strong for using crutches when I have to for a few steps, propelling manual chair and so I’m still able to do things like dressing and feeding myself for as long as possible.
Maybe you can look into what gadgets might help you be able to do something for your self that you want to be able to do?
Things as simple as button fasteners you can get for a few pounds off ebay or a grabber thing that can be used for reaching several things i use mine for twiddling kitchen blinds to open and close and curtains as well as picking up things it’s not safe for my dog to pick up - like if i dropped a knife or fork.
As Patsy mentioned maybe something like hand controls may help you to continue driving?
It’s always harder out and about as the rest of the world isn’t specifically wheelchair friendly but if you can get your own home adapted to give you the most independence that would help.
I hate travelling and having to go to other places as I know I have to be dependent on other people doing things for me and take help with me, whereas in my own bungalow I have full independence with the help of my gadgets and my dog!
Hi there Patsy, It is nice of you to respone to my thoughs. I don’t like to see, the people in my life as much as I did before, But I went from a cane to asisted me to get around to a motorize wheelchair in two an half yr. So Its hard for me to acept the things that are happings to me. But thing I do keep the faith. By the way what type of ataxia do you have?
Yes I hope this form helps me to cope.
Patsy said:
Aw Timothy - I do feel for you. When I am on the computer, I feel really confident - probably because I have been typing for over 50 years and feel at home. I can express myself on the keyboard and it’s so much easier than speaking - wouldnt it be great if in real life, you could delete words and try again!!
I do find it easier to keep to a routine as much as possible and get quite nervous about time away from home. Funnily enough, when I go out, I cope better on my own than when I am with my husband - must be a psychological thing there.
The greatest thing I did was to have hand controls fitted to my car - that has maintained my independence for getting about and I can now continue to visit my little grandchildren.
I hope that you will find comfort in using this forum - all good wishes, Patsy/CA/66/Ipswich
Hi Kati, just for you know that I haven lost all my feeling about my life. But It’s still very hard to know that I have a limet as to what I can do and what I can’t. I would really like to feel that I can feed myself without any problem of chokeing. I have a manull and apowered wheelchair, iIn which I have to use one or the orther to get around, I went from a cane to a walker to the wheelchair in such a short time. So I’m very depress! But as long as I know there is someone I can talk to about my feelings than I will be alright. I hope! So you have a dog ,what it’s name and how do you control him? I see that you exersize, what can you do? If I had the will I would probally workout also. Until we can talk again, thanks for your ear.
Kati said:
It is hard, as you cant plan anything as you have no idea how you are going to be on the day.
I personally found that researching types of gadgets helps me as I can find out what might work for different stages along the way and then know where to get them form and how much I need to save up etc. It helps me feel I am doing something positive about my situation.
I’m not sure how fast your ataxia is progressing but I use wheelchair most of time and am still managing independently in an adapted house. I have adaptions to computer though even with those its not always easy.
At moment I’m having some weighted wristbands made by a company who make gripping aids for quadriplegics and hoping they will steady my arms a bit more to enable me to manage controlling the cursor a bit better. I can still hit keys on keyboard luckily so use keyguards, word prediction and abbreviation-expansion on computer and lightwriter communication aid to assist typing.
My gross motor skills are ok and I do exercises everyday to keep my arms strong for using crutches when I have to for a few steps, propelling manual chair and so I’m still able to do things like dressing and feeding myself for as long as possible.
Maybe you can look into what gadgets might help you be able to do something for your self that you want to be able to do?
Things as simple as button fasteners you can get for a few pounds off ebay or a grabber thing that can be used for reaching several things i use mine for twiddling kitchen blinds to open and close and curtains as well as picking up things it’s not safe for my dog to pick up - like if i dropped a knife or fork.
As Patsy mentioned maybe something like hand controls may help you to continue driving?
It’s always harder out and about as the rest of the world isn’t specifically wheelchair friendly but if you can get your own home adapted to give you the most independence that would help.
I hate travelling and having to go to other places as I know I have to be dependent on other people doing things for me and take help with me, whereas in my own bungalow I have full independence with the help of my gadgets and my dog!
Mine was quick to start with about 18 months from walking normally to wheelchair indoors and out. I have had my dog from a puppy she was about 16-18months old when I got my first mobility scooter so she soon learnt to trot alongside it so I could walk her. I trained her to help me around house so that helps too and she keeps me company and gives me a routine and something to get up and keep going for.
I use the wii to exercise and I like Yoga, if I cant do exactly what they are doing on screen I try and adapt it from chair or floor. I found other games useful for hand co-ordination too. I made a gripping aid that holds the stylus from my Nintendo DSi and gives me better grip so I can do puzzle games (keeps the brain sharp) and I use an hair scrunchie tied around the wii remote whilst holding it to play games on wii like tennis which is good for arms.
I have nuDrive levers now for manual chair and they make it easier so when I need to go out in someone’s car I can push myself around shopping centre and that gives me some exercise too (I use mobility scooter around village to walk dog and go to Asda, as there’s lots of big hills around here and I can’t manage them in manual chair).
It is scary when it progresses so fast by time I had got to wheelchair stage my speech had started being affected and this last year I had more problems with hand co-ordination having to switch to assistive programs and special mouse last august. Also have bladder probs which make it hugely embarrassing going out as constantly thinking about how far I am from loo and if I can get there in time. I dont enjoy going out to socialise unless its people I already know who can understand me etc.
I think getting tired so quick is frustrating as dont have much energy left to spare after I got myself up and dressed and walked my dog twice in one day, plus the energy it takes to exercise and do other stuff for myself. I’m worn out by teatime after getting back from second walk with dog and then having dinner to cook.
I try and choose foods that are easier to eat and eat slower, foods with a sauce or gravy tend to be easier to get down and food that doesnt need as much chewing. I keep in those thinner cup-a-soups that will go through a straw if I am having difficulties with coughing and spluttering over food. It doesn’t tend to happen to me too much luckily unless I have been in situation where I have had to try and speak alot and my throat muscles are really tired, I find I tend to be choking alot if I try and eat when I am getting too tired.
Depression is not something I have suffered from very badly, I guess maybe because I have to get myself up everyday to take my dog out and by time get home I always felt better after blowing off the cobwebs over the playing fields! I’m usually either busy doing something or resting and I think that has helped keep depression at bay. Maybe I would have found it harder if i didnt have a reason for having to get up and go out everyday.
Hi Timothy - Still learning how to use this forum - I didnt click on ‘follow’ at the bottom and only just checked for your response.
My ataxia is CA with no explanation so far. I have had numerous tests over the last four years and now I am being offered a second opinion at cambridge Hospital. That is about a 2 hour drive from here so I am not keen to strt all over again there. Quite frankly I dont see the point - I have received encouraging responses from caring people and havent ruled it out yet.
I shall be 67 this year and consider myself lucky to have got this far without losing my mobility. I have just been given a second walking stick by physio which helps my posture - many aches and pains are caused by bad posture and ataxic movement.
Do you drive? I find driving my car makes me feel very independent and therefore very important to me.
However, most important of all is the opportunity to communicate with others on the internet and I hope that you will find the same benefit. I have met many friends via the internet. Take care, Patsy/CA/66/Ipswich, UK
Timothy H Thomas said:
Hi there Patsy, It is nice of you to respone to my thoughs. I don’t like to see, the people in my life as much as I did before, But I went from a cane to asisted me to get around to a motorize wheelchair in two an half yr. So Its hard for me to acept the things that are happings to me. But thing I do keep the faith. By the way what type of ataxia do you have?
Yes I hope this form helps me to cope.
Patsy said:Aw Timothy - I do feel for you. When I am on the computer, I feel really confident - probably because I have been typing for over 50 years and feel at home. I can express myself on the keyboard and it’s so much easier than speaking - wouldnt it be great if in real life, you could delete words and try again!!
I do find it easier to keep to a routine as much as possible and get quite nervous about time away from home. Funnily enough, when I go out, I cope better on my own than when I am with my husband - must be a psychological thing there.
The greatest thing I did was to have hand controls fitted to my car - that has maintained my independence for getting about and I can now continue to visit my little grandchildren.
I hope that you will find comfort in using this forum - all good wishes, Patsy/CA/66/Ipswich
My biggest acievement this week was getting the lawn mower out of the shed, mowing my ‘size of a stamp’ lawn, putting the cuttings in the compost bin, putting the mower away and sweeping the grass off the patio. It took me all afternoon and several short rests, but I did it. And I’ll do it again in 2 weeks time. I was completely exhausted afterwards. So no physical activities for the rest of the day.
I find that the jobs that were a real chore like changing the bed, hanging the washing out and so on, are the things I hang on to now. I’ll do as much as I can for as long as I can. I will go abroad annually for as long as I can, I’ll dance (wobbley) for as long as can. I too, as well as everybody else on here, have lost so much to this frustrating parasite of a disorder. But I was a person with a great personality before this showed it’s ugly face. I’m not ready to let it define me. After I got my head around who I wanted to be whilst suffering CA, the depression took a back seat (although still lingering and taking the pills). I know I’m not in a chair, but that too may become a part of my life, but I am not gonna let it take my courage and true gritt. I am a one parent family and believed in leading by example, not only at home but at work too. I can’t let my children (now 20 and 22) see me fail no matter what the circumstance. They may well have to live their life without me one day, and I hope I have installed into them how to continue with strength when that happens.
As for how to cope with daily activities of life, Patsy is right, Routine is best as much as poss. Takes me 3 hours from waking up to dressed and ready to walk (stagger) with the dog…but I do it all myself and I am proud that I force myself to do this when it would be all too easy to stay my pjamas all day. Kati always has good ideas too on how to survive.
It is really hard Timothy, but life is.Try to just tell yourself you haven’t found your way of doing things yet. I call this my ‘new life’ and try to talk about my past as my old life. I too am learning about myself all the time. I really feel for you. I hope you do find that thing that will help you to find your way forward with this all. I find it hard to limit myself. My poor body crashs when I’ve pushed it too far (like the last 2 days). Then it’s sofa rest n catch up with my reading, tv, and laptop.
Take care, talk soon. Jenny
Hi Jennifer, thanx for your ideal about thing that have deal with. I sure your family Love you, and want the best for you. I myself have went thourgh the weble walble of trying to walk to and from my car, job. Then I broke my right ancle, which my life of possive thinging went out window. But do have my Wife, and sister that try to keep in possive maner. You mention that cut your grass, Ifeel for you, just been able keep my head in the holder of my wheelchair is enough for me to handle. I myself have to get up from my bed with the knowledge, that have to push myself up and shower put on my clothes in about 1 1/2 hr. I thing that I am very independent, I don’t ask for help like I should, but I keep going without the help that I should. thanks for your attention to my wonders, and I’ll talk to you later. PS don’t hurt yourself trying to keep your lawn nice. Tim
Jennifer Davies said:
My biggest acievement this week was getting the lawn mower out of the shed, mowing my ‘size of a stamp’ lawn, putting the cuttings in the compost bin, putting the mower away and sweeping the grass off the patio. It took me all afternoon and several short rests, but I did it. And I’ll do it again in 2 weeks time. I was completely exhausted afterwards. So no physical activities for the rest of the day.
I find that the jobs that were a real chore like changing the bed, hanging the washing out and so on, are the things I hang on to now. I’ll do as much as I can for as long as I can. I will go abroad annually for as long as I can, I’ll dance (wobbley) for as long as can. I too, as well as everybody else on here, have lost so much to this frustrating parasite of a disorder. But I was a person with a great personality before this showed it’s ugly face. I’m not ready to let it define me. After I got my head around who I wanted to be whilst suffering CA, the depression took a back seat (although still lingering and taking the pills). I know I’m not in a chair, but that too may become a part of my life, but I am not gonna let it take my courage and true gritt. I am a one parent family and believed in leading by example, not only at home but at work too. I can’t let my children (now 20 and 22) see me fail no matter what the circumstance. They may well have to live their life without me one day, and I hope I have installed into them how to continue with strength when that happens.
As for how to cope with daily activities of life, Patsy is right, Routine is best as much as poss. Takes me 3 hours from waking up to dressed and ready to walk (stagger) with the dog…but I do it all myself and I am proud that I force myself to do this when it would be all too easy to stay my pjamas all day. Kati always has good ideas too on how to survive.
It is really hard Timothy, but life is.Try to just tell yourself you haven’t found your way of doing things yet. I call this my ‘new life’ and try to talk about my past as my old life. I too am learning about myself all the time. I really feel for you. I hope you do find that thing that will help you to find your way forward with this all. I find it hard to limit myself. My poor body crashs when I’ve pushed it too far (like the last 2 days). Then it’s sofa rest n catch up with my reading, tv, and laptop.
Take care, talk soon. Jenny
I can truly relate to this lack of energy but find that adrenalin is my greatest friend - okay it does have bad after effects but for me its worth it. I like to have a little notice of what to expect but NOT too much as I get myself in a state and end up having panic attack. It’s really amazing how I can push myself when in the company of my grandchildren.
Lots of love, Patsy x
Hi Jenny
Just an Idea but try just a strimmer for your small lawn (I did for as small one)
BoB
Got rid of my lawn and now have decoritive stones and water feature.lol
Bob bird said:
Hi Jenny
Just an Idea but try just a strimmer for your small lawn (I did for as small one)
BoB
Sounds a great idea Carol - enjoy - lots of nice birds?
It’s on the cards for when I just can’t do it anymore. Already have a large patio that takes up half the garden. Have made my flower beds bigger, slowly but surely. But have been designining a mosaic design to go in with the stones when that day comes. I love my garden. It’s my haven and hobby.
carol reading said:
Got rid of my lawn and now have decoritive stones and water feature.lol
Bob bird said:Hi Jenny
Just an Idea but try just a strimmer for your small lawn (I did for as small one)
BoB
Hi there Jennifer, I know that it can be tough, but you keep up and all will be well. You should keep it up, I don’t want to hear that you have stop dreaming. You keep your haven and hobby!
Jennifer Davies said:
It’s on the cards for when I just can’t do it anymore. Already have a large patio that takes up half the garden. Have made my flower beds bigger, slowly but surely. But have been designining a mosaic design to go in with the stones when that day comes. I love my garden. It’s my haven and hobby.
carol reading said:Got rid of my lawn and now have decoritive stones and water feature.lol
Bob bird said:Hi Jenny
Just an Idea but try just a strimmer for your small lawn (I did for as small one)
BoB
Nothing can compare to the pleasure of a garden especially for those who enjoy gardening.
Even when I just had a balcony, I had grapevine in tub. To see plants come to life at end of winter is such a joy.
I had a few years in a flat without even a balcony but then we enjoyed the parks and gardens but now I have a garden again, I am so happy with it.
The birds bring so much joy too.
Patsy x
Espesially during the spring and summer. What do you like to do or spend your time Timothy? I know you have a morning routine, but what do you do for the rest of the day? It sounds like you have alot more challenges than I do. I’d be interested to know what you do during from when you get up to when you go to bed. Hope you’re doing ok. Jenny. x
Well I’ll tellyou Jennifer, I Manly watch TV, or go the computer to pay bills. My caregiver make breakfeast, soon I’m finish I take my meds, and wait until lunchtime, all the time I’m watching tv or messing with the computer. But that is what my day concise of, but I will soon be able to play some chess with my caregiver husband! So their is my days down too the wire. I know its so boring, but wind you can’t get around without a wheelchair that does’n t leave you with much you do!
Tim
Jennifer Davies said:
Espesially during the spring and summer. What do you like to do or spend your time Timothy? I know you have a morning routine, but what do you do for the rest of the day? It sounds like you have alot more challenges than I do. I’d be interested to know what you do during from when you get up to when you go to bed. Hope you’re doing ok. Jenny. x
Dont you have a garden Timothy? or go to the park in your wheelchair? I am computer much of the time too - really dont where the time goes but I do like to get some fresh air especially when the sun is out.
Although I dont need wheelchair, and I am sure you need much more time for everything, I like to do stretching exercises.
Do you have a physio? Patsy x
Whats up Patsy, no I do not have garden, but house is taken care of by my wife, she water the grass when she gets the time. As for me I go out sometimes, But not at all these past weeks, it been to hot.
Tim
Patsy said:
Dont you have a garden Timothy? or go to the park in your wheelchair? I am computer much of the time too - really dont where the time goes but I do like to get some fresh air especially when the sun is out.
Although I dont need wheelchair, and I am sure you need much more time for everything, I like to do stretching exercises.
Do you have a physio? Patsy x