cerebellar ataxia

[suzieg56]

Hi all I'm Sue and was diagnosed last March my balance and tremors are getting worse and my confidence in walking on my own is seriously diminished. At present I have no aids and feel my husband doesn't fully understand my condition though I have printed material for him to read. I don't know what the next step is any help guys thanks

[HarryB Administrator]

Hi suzieg56

Like a lot of things I think no-one can really understand what it is like to have ataxia unless you have ataxia yourself. Although it is possible your husband will never fully understand your condition (that is absolutely no-one's fault) I wonder if he may benefit from meeting and talking to others who have/are affected by ataxia who are and have been in a similar situation.

Ataxia UK have a network of Branches and Support Groups around the UK and an annual conference, which this year is on 21st October at the Radisson Blu in Stansted.

Best wishes

Harriet

[suzieg56 in reply to HarryB]

Thanks Harriet will speak to him

Best Wishes

Sue

[Guyb]

Hi I'm Guy I don't think anyone can imagine what we go through,even my own go dosnt understand everybody's saying get a stick or get this or that they don't understand it's balance not stiff limbs they all think they know best

[suzieg56 in reply to Guyb]

Thank you Guy for responding I know what you mean people say get a rolator !!

[wobblybee]

🙂 it can be very frustrating and stressful, particularly in my experience if it's an Episodic type, which I suspect mine may turn out to be.

Ataxia is definitely one of the things you have to experience before having a full understanding of what it actually means. Reading about it and observing someone coping with symptoms doesn't convey the true complexities of the condition. There are so many hidden challenges like impaired mental agility, multitasking and lack of spatial awareness, disorientation in bright and poor lighting....

Generally, husbands are too close if you like, they're used to 'off days' and often think we'll just cope as usual. Mine is 70 and still works fulltime, he's got many years under his belt re coping with my ataxia but I still don't think he fully understands🙂xB

[suzieg56 in reply to wobblybee]

Thankyou wobblybee for responding I think he's trying to understand but he's just not getting there I can't carry a full cup of hot drinks and he wants that good luck love x

[Guyb in reply to suzieg56]

Hi im the same cant carry a cup of tea or offer one to tradesmen when they come to fit aids x

[TedTom]

Hi, think it might be helpful to go to website of DrThomas Clouse, Reclaiming Natural Movement , or Walking with Ataxia. Friend has found what he says, as a fellow ataxic, and what he advises in terms of movement the most helpful thing in ten years since being diagnosed .

[suzieg56 in reply to TedTom]

Thank you Ted Tom will look at that

[poolboy]

I ALWAYS SAY THAT IT IS LIKE BEING DRUNK. ON TOP OF THAT IT FEELS AS IF SOMEONE HAS CUT YOU IN HALF JUST BELOW THE WAISTLINE AND THE JOINED THE 2 PIECES BACK TOGETHER WITH A SPRING .

[ddmagee1 in reply to poolboy]

Pool boy, I like your explanation! Some days, that's exactly it-sort of like a "bobblehead".

[suzieg56 in reply to poolboy]

Hi Poolboy do you have frequent falls I feel I blackout as I can't save myself from falling

Good luck x

[poolboy in reply to suzieg56]

Not at the moment and to be honest the only point of reference I have is remembering what I was like 3/4 years ago and comparing it to now. I struggle to cross the road , I can't use the train and I can't use bridges anymore. If I turn round to quick I do lose my balance and to be honest apart from those things I don't feel to bad. The only thing I would say is when I stop excercising I seem to go down hill rapidly. Best of luck Suzieg.

[pollybanana]

Hello Sue, I feel exactly the same ad you. No cause has been found for my ataxia and I think it makes it harderto understand because it s not a 'proper diagnosis ' i just trip up and wobble a bit and I am making my arms shake!! I do use a stick as I now feel unsafe without it if I am going far and I have also bought a mob scooter, but have not used it much. I am trying to stay positive and just take each day as it comes. Take care.

[suzieg56 in reply to pollybanana]

Hi Polly

Thanks for your response I shake and have to make half a cuppa at present I don't use a stick or anything but my confidence is so low when walking alone. My hubby doesn't care for linking arms and I'm only confident at supermarket if I have a trolley to cling to Goog luck xx

[Meekster]

Hi Sue! Walking is challenging for many of us. When I started feeling very insecure about walking a friend of mine suggested to try an old pair of elbow crutches she had. I really disliked the thought of needing anything to help myself get around but decided to try it. I'm quite stubborn and thought maybe I could prove that a crutch wasn't going to make any difference. I also felt very ashamed of not being able to do it on my own. After getting the hang of it a new world opend up for me. Things I no longer could do was attainable. At that point I decided that stick was going to be my friend. The shame faded.

A year later I noticed that my stick friend didn't do it for me anymore. My balance had gotten worse and I was constantly trying to keep my balance while walking. This was exausting me so much that I didn't leave the house much anymore. The distance that I could walk kept getting shorter and shorter. I knew I needed to take the next step: a rollator, but dreaded the idea. I'm 44 not 84! Again stubborn, i'd prove the rollator would make no difference. Well, suprise! It did. My PT helped me make this step by lending me one. I didn't like it at first but after I learned to deal with my fears and shame a new world opened up once again.

I now walk with a rollz flex and am actually quite proud of it. It looks like a shopper and helps me to walk almost normal. It takes alot less energie. I'm working on increasing the distance with my PT and it's working.

What I'm trying to say is, try something new. Maybe it will work for you and if it doesn't try something else. The point is to keep trying so that we can make the most of all this. Don't give up! There is alot of help here and other places.

As far as husbands go, I share the frustration. They're nice and try to be understanding, at least mine does mostly. But I was thinking, how wel can somebody understand me when I don't understand things completely myself? How good am I at explaining? Everyone is different. Food for thought.

Good luck in your quest!

[TedTom in reply to Meekster]

I'm like a broken record with this but can't recommend the Walking with Ataxia website by Thomas L Clouse strongly enough. Or Reclaimimg natural movement. Following his guidance can help, as can his description of what it's like, especially useful maybe for those who don't have Ataxia trying to understand what it's like

[suzieg56 in reply to Meekster]

Oh Meekster Thank you so much that was very helpful good luck xx

[ddmagee1]

I share a similar problem. I don't think my spouse fully understands either, sometimes. I think she thinks I exaggerate, which I don't. Actually, when it comes right down to it, the only people that really understand the trials of living with Ataxia, are those who are 'cursed' with having it! We see the doctors, who may be sympathetic, but they don't experience the terror when one loses one's balance completely, can't stop one's fall, and ends up with a concussion, hematoma, and blunt force trauma to the head, with two black eyes, like I did. Trying to navigate through an icy parking lot, holds a fear of falling in me that I'm sure fellow Ataxians can relate to. I do use a three pronged cane, and put rubber tipped guards on my shoes in the winter to help negotiate walking. It does help. At any rate, I'll stop carrying on, and I'd just like to say how much I appreciate this forum, of HealthUnlocked..com, where my fellow Ataxian's and I can tell our stories and be supportive of each other.

[february]

Dear Suzieg56, I agree with what others have said! Also, it took me a long time to resolve to the fact that I had to use a cane (stick to you), as I live in the USA. I fell, severely injuring my back, while out and about. Started using a cane right away! I'm still able to walk, EXTREMELY carefully, in my home without it, as I have furniture and walls to bounce off of...,ha. I also have a couple of rollators (heavy-duty and lightweight one) I use when out, depending on what I need. Yes, I don't think anyone can truly understand (physically or psychologically) what it's like to deal with ataxia, unless they have it. It's also, hard to explain (for me)! My ataxia has progressed over the years (it's been 13 years since I was diagnosed, although I had very minor symptoms starting about 8 years before diagnoses), so I don't know how much longer (?) I'll be using my cane. My best to you..., ;o)

[KennyH]

Hi Sue, i am new to this, this is my first post. I have had Cerabellar Ataxia for a few years. I have recently had a second MRI head scan, a lumber puncture and numerous blood tests. The results were inconclusive as to the cause of the ataxia. I understand what you say about your husband, my wife tries very hard for me, but i do sometimes think she hasn't got a clue. You say you use no aids, i often use a walking stick when out. I'm not sure it helps me walk much, but it makes me feel better. Other people see the stick and realise i have a problem and i'm not just drunk,that at least makes me feel better. All the best....

[Guyb]

I find the best way of explaining to someone is to remember when they went on the waltzer at the fair and there legs were all wobbly when they got off

[auntiesally]

hi Sue, sorry for how you feel, I really do understand, are you on any anti depressants? I too didnt want any aids, but now have a stick, not sure if it helps or is just a "comfy". My main difficuly is going up and down kerbs, never realised how many they are! I do a lot of breathing exercises, in through the nose and out, through the mouth, the more you think of the tremors the worse they get, have you a close friend that you could talk to? Dont bottle your feelings up .

take care x

[Ali-G]

Dear Sue, Snap I was also diagnosed last March, I know how hard it is because it is very much a hidden condition. If you are able to meet other people with ataxia it really helps, you and the people around you, to begin to realise the barriers we face. But, stay positive and a sense of humour is the thing that keeps me going, I laugh at myself and explain that I speak like a darlick, walk like a thunderbird and in the bathroom in the morning i sound like shrek because I have a lot of choking issues. Buy yourself a stick, I use a walking pole, it really helps. Take care of yourself we all understand. Love Ali xx

[suzieg56]

What a lovely load of people thanks for all your responses been away and good luck to everyone. Seeing neurologist on 14th with hubby who has some questions to ask hope he comes out with more insight God bless xx

[peterallison]

I know its a year since this post, but just reading it again, now. Can see a lot of people saying there partners do not always understand... Well if they don't, what chance have we got when being assessed by various governing bodies... I have twice been turned down for PIP, because I put on a brave face when it comes to certain obstacles in my life, and got NO points at the UC assessment I had, a few weeks ago, but because I felt I was treated wrong, am going all the way with the appeal process

[Razzy in reply to peterallison]

I have just had my PIP assessment and am waiting to see if I get it or not, (I do have emphysema and heart trouble also) I struggled with describing how my SCA6 affected my daily living, such as being able to prepare meals but finding cooking them difficult due to being unable to bend down and get items in/out of oven, lifting saucepans with water in them on and off the cooker. I did ask if my face to face assessment could be done by someone with knowledge of Ataxia, but was told that wasn't possible. I am waiting to find out if I am going to get it, as it took me 3 attempts to get my DLA

[peterallison in reply to Razzy]

I get so so annoyed, when I see people get the likes of PIP, when outwardly, there looks nothing wrong. Has it come down to telling "porkies" ( like a friend did). I am going to re apply for PIP in jan/feb 2019, but on the week of my assessment, I am going to stop taking my pain killers and muscle relaxants, so to show the silly assessor, without them I can hardly walk, but being the stubborn person I have always been, I will try and walk as far as I can, even if it kills me. To me there is no such word as "can't"

[SamGH in reply to peterallison]

Speaking as someone who was amazed to get awarded as much PIP as I did. I feel that failure to get awarded it comes with the natural pride many of us demonstrate of having overcome difficulties. Drop the pride be honest how hard things are and you'll get the award.

[peterallison in reply to SamGH]

this is true, I must have had rotten luck with the 2 people and the DWP doctor, as they just did not seem to get it, even tho they all said they new what Ataxia is

[Razzy]

Well I was told I would hear back from them before my next DLA payment was due (it is due tomorrow) and all I have had is a txt saying they have had the information back from the assessor and can now assess my case !!! so it seems a waiting game now .