Depressed/anxious/hopeless!

[dennisataxia]

I'm new here. Writing this partly to record the history of my present condition:

Around 2012 I tripped on a pot-hole & fell backwards, hit the back of my head on the asphalt rendering me unconscious. After some weeks, I found myself getting disoriented with difficulty walking. The neurologist at the time thought I had Mayasthenia Gravis.

The next neurologist, having checked my MRI/MRA, found that the cerebellum had shrunk-Diagnosis: Cerebellar Ataxia. Irreversible! Progressive! Spastic, wobbly gait! peripheral neuropathy! deteriorating speech/eyesight! Suggested physical therapy to compensate & ease symptoms. Now having difficulty finding a therapist familiar with this condition.....Now what?!! To compound my frustration, there are people who think I'm faking it!!

[LOUISASAM]

I'm so sorry. Firstly if you haven't as yet join Ataxia UK. They will give you a card to carry on you at all times. It explains what ataxia is and the symptoms.

[ww-wibblywobbly]

No-one on this site will think you're faking it. We all have similar symptoms to a more or lesser degree.

I see a physiotherapist twice per week (I live in France though) and as long as they are used to working with other neurological conditions they should be able to work with you. My physiotherapist doesn't see anyone else with the same condition, but he works with people who have had strokes and have MS, and Parkinson's disease. I have been going for years now, so i often identify which problems i want to work on. For example the other day I worked at avoiding things on the floor, mainly cos i had fallen on the wood burner that morning and burnt my hand trying to avoid the cat!!

I do find that the physiotherapy helps tremendously. I'm sure that without I would be in a wheelchair 24/7. The results aren't instant but really help long term.

You say your condition is progressive, have the drs told you that? My condition is degenerative cos it's genetic, I didn't realise that it can be degenerative from a bump on the head too.

Keep looking for a physiotherapist who works with neurological disorders and you should be fine. Keep looking, don't give up.

Take care

Love Alison x

[ww-wibblywobbly in reply to ww-wibblywobbly]

I meant working with the physiotherapist will be fine. Not that you'll be amazingly cured - unfortunately xx

[february]

Dear Dennisataxia. First, a HUGE welcome to you! People who say you are faking it are just ignorant...,pay no mind to them!!! I've had ataxia due to Niemann Pick C disease (just found out why in 2017 through exome genetic testing) over 20 years and mine is and has progressed. I agree with ww.wibblywobbly as physiotherapy (physical therapy to me, as I live in the USA) is very helpful. I do PT yearly, as my health insurance pays for 20 visits per year. I learn what to do at home and continue to exercise (as safely as possible) for strength and balance. I'm NOT saying it's easy by any means, just believe if you don't use it you loose it! You are not alone in your journey! My best to you...,;o)

[ConfusedAtaxian]

Hi. I first started with CA 3 years ago. It has got much worse. Cause unknown. Physio gave me exercises and signed me off. Neurologist said “it might progress, it might not.....” and signed me off. No-one’s heard of it. Now cannot write and typing getting difficult. Friends look at me like I’m not trying hard enough. It’s so hard to explain how bad I am feeling and they don’t see the risks I take to be as normal as poss. or trying to use a knife and fork ore even clean my teeth! But, dennisataxia, we understand each other as does Ataxia U K. My grandson is being treated for Leukemia and doing well. I wouldn’t want to go through what he has been through. So I keep smiling and keep positive. It could be worse........

[Hidden]

goodness. I had a family member who questioned every one of my symptoms. "do you really think it's...(fill in the blank)?" I don't talk to him anymore. it's bad enough struggling with symptoms and coming to terms with daily bodily malfunctions without taking on someone else's nonsense.

I get the struggle to find a therapist. i'd say try it and feel free to challenge them if they try to make you do something you can't. I haven't in the past and once ended up crawling for a week because my back turned to stone (at least it felt like it). now I speak up. even though i'm younger than many of their patients, I work on not comparing myself and just pushing myself when I can.

[ddmagee1]

Nothing irritates me more, than when someone thinks and/or tells me that my symptoms are "mental" or give me the impression that they think I am faking my symptoms ( such as wobbly gait ). Some people will say that, or allude to that, to me, and then say that, I look and act completely fine to them, and they don't see anything wrong with me! I have been diagnosed with Ataxia, and Parkinson's Disease, take Sinemet, and am past the beginning stages. Each day is different for me. Sometimes my balance isn't off too much, other days it's off so bad that I can't walk around too much. So it goes, with many symptoms that we, as PD and Ataxia sufferers, have to deal with. I try to be non confrontational, when people question me like that. Basically, I prefer not to even discuss my physical complaints and ailments with most people. It's better that way.

[pinjem]

Many of us have people, even close family questioning whether our condition is psychosomatic, which is absolutely infuriating. I eventually had a test that gave an indisputable fact which I trotted out and it shut up those destructive comments. I tell people it is like have far too much alcohol to drink, all the time, unless I'm very still, people seem to understand that!

[DeniseLB]

I just read everyone else's replies and agree times 10. I like you have been told that the probable cause for my conditions is down to a massive whack to the back of the head. No intention really meant, but I like many others were trying to get up the stairs to Cannon street station and just happened to get in this ladies way and she shoved me with quite some force and I smashed my head on Cannon street! At the time with two gentleman's help I got up and maybe I shouldn't as I just tried to carry on. The point is I understand that it feels like total injustice and if only that had not happened on that day. That for me was four years ago and I know what it is like to have to go through convincing other people that there is a problem. I didn't even see a doctor about what I was going through for over a year I just kept trying to carry on. It is depressing and life changing and you have to get people to read up on the condition themselves. You have to start to learn the things that you can do and you will have to work at it. In the early days I lost the ability to write my own name and was actually falling over all the time. The brain though is really clever and there are ways to teach yourself to do things again. I could always type so that came back first, I just talked to anyone that would listen which helped my speech and I walk as much as I can. The hospital are probably not finished with you yet as they will test all of your vital organs and if as I hope for you they are okay then the rest really is up to you.

Any time you want to should please do as I want to most of the time.

Denise xx

[123geoff]

Hello with MRI explains a lot and with all is said if the neurology looks at the full records. Find answers with gene results that this is passed on to you, If you know what SC , gene Is then you can find medication. What people see on the outside they don't see what is on the inside. Don't worry of ignorance what they are not aware of ataxia they are the last people to say anything. Get on with your life you know what you have got, anxiety is apart of a link with ataxia. Life is too precious without worrying about what people think to enjoy your life to the full.