Tremors

[Vion]

Been having lot of Tremors today. Struggling to carry things or focus. Starting to wonder if it is Ataxia or MS that I have, as both very similar my vision has been off today also. I guess I am asking if this is how Ataxia affect you on a daily basis? does it progress this quickly as its only been 4 months? Had a night in hospital on paracetamol drip due to headaches but Dr still said Ataxia but functional.😡frustrating.

[klazien]

Tremors might be part of Ataxia, or MS, or Parkinsons, or MSA. Or any neurological disease.

My progression was also very fast and I had every test available at that time (10 years ago). They said that I did not have MS because something should have shown that did not.

You should be tested for everything. There might be better and more tests nowadays.

At that time they called it, by want of anything they knew of, Idiopathic Ataxia.

Who knows what it is, there is no cure for anything anyway but it would be nice to know exactly what I have.

After my very fast decline the first year it slowed down and even though the decline is slow now, it goes on. That is how it is with those neurological diseases. It took me some time to except that but since there is nothing one can do about it, one might as well.

If your sight is still good enough to get about, you should.

I have an additional condition which has made me almost blind but I can still read with enlarged letters so with my Kindle or computer. That is good but I cannot have a guide dog because of not being able to walk and not a mobility scooter because of not being able to see. Anyway I cannot get around alone because of the blindness.

Most people don’t think that a handicapped person can have more than one bad condition but many people do. Some of your symptoms could be from different conditions. The best way is to be tested.

[nigelrheath]

Hi Vion

So early after diagnosis you are still suffering from shock. This often includes fear of the future, anger, sadness and other negative emotions. Reading the posts and replies on here it seems this is a very common reaction with short term worsening of the symptoms. Once we get past this stage and realise the only solution is in our hands do we begin to get some control back.

Do not confuse the doctors telling you their medicine will not help you with there is nothing that can be done. There lot's can be done, and how much or little is down to you.

I know you have been reading my blog site. Keep looking and keep posting on here. We understand and there are many ways to cope beyond my ideas.

Several of the folks on here have discovered life is better when you can finally dismiss the need to know what the medical profession think or imagine they know, and get on with your life. Do something every day and instead of focusing on your ataxia put your focus outside you. What we give attention takes up our limited span, so choose things which lift your spirits, bring you joy and make you laugh will not leave room for dark thoughts. The more you make this a habit the easier it becomes.

Nigel

[Vion in reply to nigelrheath]

I am trying to be positive and being a carer keeps me busy. Helping others gives me satisfaction. I work with children and so want to return to the job but have to build my stamina first. I have Physiotherapy next week and try to get out each day while the sun is up. I do so love this time of year and look forward to the winter months, lots of knitting and Christmas movies so for now this is my goal positive thoughts and short walks. Thanks feeling so much better.💃🙏🏽💪🏾☀️

[neta in reply to nigelrheath]

Maybe I am just a hopeless mental case but I find it hard to be positive about all this even though I have relatively mild ataxia. Frankly, I am not sure the pt (physical therapy) or any of the therapies do much. The disease is bigger than the therapies. I do think that hard gym work can be helpful though not instantly. Eventually this disease humbles us. If this is bad news, I guess we should get on line. Anyone with any sudden ailment is shocked and saddened; I think of all the people who have sudden, fatal, cancer diagnoses. For me this CA "event" came too soon. It robbed me of my ability to be much of a grandmother or a (second) wife. N

[Iain_100 in reply to neta]

You're not a hopeless mental case at all. And IT is really hard to be positive sometimes.

But ataxia is the new reality, whether we like it or not (and we don't!).

Acceptance of that new reality, was the key turning point for me. And, as perverse as it may sound, I actually felt better (in my head at least) once I accepted that the future was different - and somewhat limited.

Limited. Not impossible.

Ataxia is here to stay. We just need to learn how to live with it.

And it is much easier to face it with a smile. Which DOES return!

Iain

[neta in reply to Iain_100]

Thanks to both Nigel and Iain for you're thoughtful responses. I feel as though I am getting worse but my neuro keeps saying, "it could be worse". I sometimes wonder when will this degenerative process will end? I feel like Alice in Wonderland, falling down a hole. When I sit in silence, I feel fine, as before. Will this also change? I have been diagnosed with auto-immune induced CA

My imagination or just me? "Living with Ataxia", the American group, no longer initiates conversations??

[neta in reply to Iain_100]

I realize now why acceptance is so hard for me because I come from a world where only very very old people (like 90) get sick. Yes, young people die of disease and accidents, but this is seen as rare and freakish and mourned extravagantly. Its a very unforgiving milieu. I am told, "dont you dare" (use a cane} and "speak louder". Already, my mother in-law has called me a "cripple." I wonder how cancer is viewed or a stroke or something well known. I dont even know what to say. The general view is that I don't exercise enough and dont work (at a job), so this is seen as a psychological problem.

[nigelrheath in reply to neta]

Dear Neta

The diagnosis is all about loss. This is hard for anyone to cope with. A diagnosis of cancer is a great shock too. But cancer patients know there is backup support and all sorts of medicine and research to help them overcome it and return to their old life. This hope is not offered to those of us with sca. Take away hope and life seems bleak. I wish we could find a magic wand or miracle cure, but no one is looking.

As Iain says life may be limited, but this means we can concentrate on what is available to us.

The way to regain your life and ambitions is by little actions everyday. The brain needs something to be repeated regularly before it begins to groove and automate the behaviour. So hard gym work only helps if you follow a programme designed to fit your needs. Much better is to devise a home based programme of small easy exercises. The best way to build strength without bulk is by repetition of exercise within your comfort zone. Something you can do easily 5 times becomes a strength builder when you do it 5 times, 5 times a week.

My wife Jenny and I do 30 minutes yoga based stretching everyday before breakfast. After 9 months of this gentle regime my legs are much stronger, my pelvis and hips are regaining flexibility and my general sense of wellbeing is improved. Tonight we are going to a birthday party with barn dancing. I'm looking forward to it and plan to dance a lot, in a slightly wobbly way no doubt.

There is no easy answer beyond saying your future is down to you, and whatever you choose is okay.

Keep sharing your feelings, we understand and all wish you the best.

Nigel

[neta in reply to nigelrheath]

Thanks to both Nigel and Iain for you're thoughtful responses. I feel as though I am getting worse but my neuro keeps saying, "it could be worse". I sometimes wonder when will this degenerative process will end? I feel like Alice in Wonderland, falling down a hole. When I sit in silence, I feel fine, as before. Will this also change? I have been diagnosed with auto-immune induced CA

My imagination or just me? "Living with Ataxia", the American group, no longer initiates conversations??

[neta in reply to nigelrheath]

Nigel,

I hear what you are saying and thanks. I feel like my life is crashing. Everyone is moving on professionally but me. When I go to parties (never) or weddings, I simply dont move.

[wibblywobbly in reply to neta]

I think it takes time to really get to the acceptance stage. Nigel is right about the small repetitive exercises, they start of difficult and with time they get easier. Also when you accept this illness then the decline slows down. I can actually do more now than I could two years ago - so you see there's still hope for maybe better times. Adjust your lifestyle to suit you and keep doing whatever you can and just a little more. Xxx

[neta in reply to wibblywobbly]

Okay but I am so wary of falling and/or choking

[wibblywobbly in reply to nigelrheath]

Oh I'm so jealous that you can still sort of dance 💃 - but enjoy it while you can.

Dancing is one of my sticking points of acceptance. I can only dance sitting down and moving my arms in their jerky out of rhythm fashion. If I move my feet then I finish up on the floor!

Do enjoy your dancing times 😊

[silkwood]

I have a lot of hand tremors.Started with vision loss last year after 6years of CA.

[wibblywobbly]

Hi vion,

I have tremors too. Mainly in my hands and arms but can be nearly my whole body if I don't address the issue with sleep.

They happen when I get really tired and have overdone things. I find the only thing to do is go to sleep and take it easy for a couple of days.

We have to adjust our lifestyle to suit this illness. I find a sleep nearly every afternoon helps keep me better. Xx