Here are my current symptoms: I now use a walker indoors and avoid the outdoors. My bladder never feels empty. My vision is both blurry and near sighted (new lenses?) My typing is slower.My speech is more halting. I am choking more when drinking...
Is the end?
hi Neta, I really do feel for you as I know you've been having a very difficult time recently.
emotional trauma will def make ataxia worse. Be kind to yourself and try to just take one day at a time. Try doing some gentle exercises every day and don't look to much at the future. With ataxia none of us know what will happen and what are abilities will continue to be. I find thinking about the future very frightening so I try not to
regarding your eyes maybe some eye exercises will help. There are some ideas on Nigel Heaths site or just look some up on the net. They def helped me but the problem may not have been the same.
Having ataxia is a constant battle, and when other emotional and physically demanding factors are at play it's even more difficult.
Some of your problems may get better, when you're feeling emotionally stronger, or they just won't seem quite so terrible.
You say that you no longer go outside. Maybe it's time to consider a wheelchair. I have a lightweight one with a battery and joystick (my husband has severe back problems and so could not push me). The wheelchair has given me a freedom. And I can actually see what's around me rather than just concentrating on my wobbly walking.
truly all my best to you
love and hugs
Alison xx
Thanks for your sage advice... xxx N
Hi, i have a walker too. Iv recently purchased one and im finding it quite hard with manoevering it when out, but people say to keep practicing and it will get better.
I too have co-ordination problems and have evoked nystagmus and dont have still vision. I have now been referred to an eye clinic. I don't have any problems with eating although i feel like iv been finding it hard to gain weight since last year!
Im a young adult and sometimes get so miserable with my life so i can totally relate to you. X
yup, got all those. For choking see my recent reply elsewhere. And talk to a Speech Therapist [misnomer] via GP recommendation.
COUGHING topic healthunlocked.com/ataxia-u...
Dear Neta,
You have every reason to feel like you do, and we are entitled to feel down sometimes, however it does not change a thing in our condition. We could maybe look around and consider we not so badly off as others with life threatning illnesses, but the thought of the future does not make us look forward to it at all. Focus on the good things you still have, try and find somethings that are still pleasurable to you. When I am down, I think of this lady who lives in a town nearby, she is 20 years younger than me, 20 times worse. She was a teacher, can hardly speak, is on a motorised wheelchair, has breakfast at a local café everyday, together with her husband (who is wonderful) cicled nearly 3000 kilometres to the Vatican. When I read about her it gives me strength to go on. facebook.com/jacinta.costa.7 I do also feel down, I am embarrassed to use a walking stick, I do not want to see anyone who may feel sorry for me, but when I think of how lucky I am to spend time with my grandchildren, to be home as I always wished, having worked in an office since the age of 20. In that sense I am lucky, it would be nicer to have all that and be healthy, but then we cannot have it all. Make the best of what you have and keep your spirits up. Do not isolate yourself.
My thoughts are with you, I hope you will feel better soon
Best wishes
Isabel
Dear Isabel,
Thanks for your kind words. You say "don't isolate yourself" I have heard this before but frankly why mix with anyone? Talking is an effort and people make me nervous. Also, they make me jealous. I am also confused because my PT and my neurologist are not in agreement. The neurologist says there is no getting better; the PT, an Aussie, says there is. XXX N
We all have bad days and I have found too recently my speech is much worse from not talking enough. Try to have music you like on in the background and sing along. My speech therapist recommends I have the radio on and reply or repeat what they say.
I am at a very similar stage to you. Also I am SLOWLY recovering from a fall. This has helped me to appreciate what I used to be able to do and fight back! It has knocked my confidence and I need to work on that.
I am not good in the sun but try to sit out in the shade a bit every day. Good for the spirit.
Do you have a pet? We have rescue dog and cats. The cats are easier for me.
It is hard but try to remember what you enjoyed doing and adapt it if necessary.For instance I love working with clay but cannot use a wheel so I shape stuff with bubble wrap and I cannot sculpt so use moulds.
My co-ordination is rubbish but colouring helps.
Thickener helps my drinks or smoothies and milkshakes.
Hope you start feeling better xx
Feeling down at the moment too,such positive comments from other sufferers I'll try and focus on what the've said.
It is so hard and you so recently lost your husband but hopefully when you are less stressed your symptoms will ease. Do you have any help? I think having a rescue lap cat might help?? Not sure if you have a garden but sitting in the shade listening to the birds help me on bad days. Also try to exercise. I have a bike. It is boring to go on but I either play music or I have bird feeders to watch. xx
How has the heat affected your ataxia?
On the tip of your tongue!
The Menopause affects?
Beware the prognosis
The knot in my rope of hope
