ataxia

[LBenyon]

I have the same ataxia as yourself and therefore suffer the same symtoms as you do, I am now 61 and was told the same as you its very progressive even through it has been slow, like you I know the last few years it has taken hold, there is no know cure, i have recently seen a consultant who deals with ataxia patients on a daily basis and was told although I have diffuctly walking I was assured that for many years to come I would be able to walk a little with the help of my trusty 3 wheeled walker!! so chin up, Lorraine

[Anna29]

Thank you Lorraine for your reply .

What type of ataxia do you have ?

There are so many various types of ataxia its a mine field to me .

I refuse to use walking sticks or crutches for now .

Want to keep going the best that I can do .

I sort of waddle along !

Using my hubby arm on the right hand side of me .

Am hoping this approach will see me through till I get to the worst

and need a crutch or something .

Its my left side mainly that is affected by the ataxia .

Cant get my head around "how the ataxia" does what it is doing ???

Even sleeping is becoming an odd experience at night now .

Nerve that are damaged jangle and sting and fizzle in my legs , arms and feet .

My nervous system is much more stressed than it used to be .

Does anyone else feel this in bed at night ?

It isn't neuropathy as that burns and is more electric shock sensations ?

When I am tired later in the day or evening - this is when I feel the pain or

my left eyelid muscle goes more lazy and it is harder t focus .

My words get more scrambled up during communicating and I get fed up

with this keep happening .

My hubby is very good and patient with me though (he knows what I am

trying to say )

This happens at random and isn't tiredness related we have noticed .

It all is a real learning curve for me currently .

Loads to learn and understand !

[xray25 in reply to Anna29]

hi Anna29 my ataxia was brought on by a servere brain stem stroke 3 yrs aga it came on gradually and i have my first app at clinic next month, i can no longer walk outside as i am to unsteady on my legs, i have tried sticks and crutches but my arms shake so much i cannot hold them, my speech and swollowing goes in the evening, although mt speech can be off most of the day, i get fed up of repeating myself, my left side gets very heavy at night as though someone is sitting on them, and i have trouble with my eye opening.

[BpurceA in reply to Anna29]

Don't forget your carer! His her input is vital to your existence.!

[LBenyon in reply to Anna29]

I cannot give you a number of my sca as several test done on myself were inconclusive,so the only name I have is cellebar ataxia,not helpful as I have rhumatiod arthrist as well?

[LBenyon in reply to LBenyon]

im very independent and have no carer??

[maber in reply to Anna29]

Hi Anna29

I was just reading your message and I hope you don't mind me sending you this ? I too waddle along and do my own thing ( people must think I am drunk ) lol . I'm having trouble holding myself up and although I'm sure being over weight doesn't help, my legs hurt and I was so tired . I take extra iron and found this has help me a bit , I don't nod off so quickly .

You said that at night your legs jangle and you have feelings . I was having trouble at night with my legs and feet twitching and feelings in them , I kept waking up or was disturbed from sleeping . I was sent to the sleep clinic and was giving a tablet to try called Melatonin 2mg 2 tablets at night it helps a lot . He also has me sitting in front of a light at night before bed for an hour , it is worth asking about . Also I was given a tablet Baclofen at night , not sure what that is for . I too can talk gibberish ,it can happen at the most inconvenient times but hay ho that's the way it goes lol. I have trouble writeing , it goes gibberish as well .

I'm so sorry I have to finish there just getting so confused , trying hard , but we are all here to help and listen .

maber

[stedman in reply to Anna29]

Hi, I don't experience the same as you. My Neurologist told me Ataxia is degenerative and could only be slowed..

Despite this I have improved beyond my initial hopes.

Retrain the Brain and feel the gain. Your mind is right, your on the right track.

All the best☺☺

[wobblybee]

My Ataxia is Idiopathic, I was diagnosed in 2011 but realised something wasn't

right many years before that.

The Neurologist told me it would be progressive and degenerative, and to ask

to be referred back if I felt symptoms were worse.

Well. symptoms have moved on since then, I progressed to a walking stick so

as to be able to retain a little independence and stay safe outdoors. This was

ok but it meant I was putting all my weight on one side of my body, gait and

posture suffered. Plus, I started experiencing nasty aches in my left leg, this

would quite often disturb sleep.

Finally, I decided enough was enough, psychologically I got my head round it

and bought a rollator.

There are lots of different models, some take into account a wider spaced gait.

I settled on ' lets go out ' from Amazon, it's lightweight and has a seat. I can't

get over the wonderful freeing experience I have when using it, I can walk and

actually look around at the same time, something that had become a thing of

the past.

My speech worsens with tiredness, I say the wrong word or the word I want

suddenly escapes me. Occasionally I've had choking issues, even saliva goes

down the wrong way due to involuntary swallowing.

I've had most of the other symptoms we learn to associate with Ataxia, along

with lack of concentration, poor mental focus and worsening memory.

But, on a positive note, best foot forward at all times xB

[LBenyon in reply to wobblybee]

I have rhumatiod arthrist as well as cellarbar ataxia and at times get very depressed and angry at my self when I cannot do things.my husband of 27 years has just left me,my decision as could not cope with his exsevice drinking as well as my 2 illness.My balance has gone to pot,my speech not good at I now use 3 wheeled walker at all times as I keep falling over but as I say chin up and carry on!!!!

[february]

Hi Anna, Ataxia is extremely frustrating and challenging (to me...,ha!) and somewhat different for all, depending on the type of ataxia (recessive, dominent or like mine idiopathic-Sporadic Cerebellar Ataxia-idopathic or unknown cause/symptoms 24/7). I'm 61 years young, diagnosed eleven years ago, although I believe I had really small symptoms starting about eight years before diagnosis. I started using a regular cane about five years ago due to a bad fall. I graduated to a quad-cane about two years ago for more stability and bought an Access Active Rollator on-line (Amazon) which I use for pleasure walking outdoors, as I can't walk far with my cane. My ataxia has progressed as my cerebellum has atrophied a bit more over the years. I slur my speech and get tired repeating myself, therefore, I've become a great listener...,ha! I cough and choke a lot, sometimes on my own saliva! Of course my balance is really compromised, as well as my dexterity (fine motor skills). My vision gets blurry and my eyes water, although I recently found out 09from an opthomologist) because of ataxia, I don't blink as often as I should. Therefore, I use lubricant preservative free eye drops six times a day, as well as an eye ointment at night when I sleep (both are over the counter). This has really helped the watering and blurriness! Fortunately, I don't suffer from much pain, just arthritis in my back, neck and various joints. My theory is I compound this pain by the way I have to carry myself, due to ataxia! I have some neuropathy in my hands/fingers and a bit of an intention tremor there also. Sorry to go on and on, just trying to explain that ataxia effects one physically in so many different ways. LIke I mentioned in a previous message, no wonder we get so tired! Having ataxia is hard work! ;o)

[LBenyon in reply to february]

I have 2 illnesses rhumatiod arthrist and cellebar ataxia and suffer with many of the sytems you mention plus I get the pains of the rhumatiod arthrist but I am a very determined person and therefore just get on with things and do not duell on the illnesses I have I sometimes get very tearful and depressed and wonder why me,??

[Anna29 in reply to february]

Hi febuary . You can go on and on about the ataxia facts to me .

Its the only way I can 'learn more' about it (sensory ataxia) - seriously !

Are my stick thin tiny limbs a characteristic sign of ataxia ?

The rubella facts can get me down as I got it through my mother , she

got rubella nursing some one else's child with rubella whilst she was just

7 weeks pregnant with me .

It was 'all' so easily avoidable really ...

I was born very deaf , deformed feet with a hole in my heart and the

mito chondrial disease too .

So my life has been one very long battle with 5 lots of septis to battle off (last septis was in 2008) then the diabetes and now the ataxia has just recently been confirmed .

I 'do' tire really easily I find - needing a nap or to simply just rest a while .

Even as a young chid I could never go playing like the other kids did !

Born with a determind battling spirit am feisty and do my own thing .

This will stand me in good stead for the future I sense and believe .

Reading posts and replies here - it appears the medics don't say or reveal much information about ataxia ?

Why are they not explaining to us ?

[Anna29]

Wow - thank you to all who have replied to me .

Very helpful and the swallowing own saliva is something that has happened with me

occasionally (thankfully) horrid when it happens though .

Didn't realise it was linked to the ataxia (thought it was just me .

So I learned another vital thing on here - from you all .

Are any of you - Diabetic ? I am - got it after pneumonia and septis infections .

More to deal and cope with but was diagnosed in 2009 with it .

So know how to deal with it and handle it all quite well .

Also keep spelling my letters bit scrambled - could be tiredness though ?

Had to keep back tracking on my key pad !

As my legs waste even more so - I will look into the Rollators for the future .

Is sensory ataxia - actually progressive ?

Both my consultants and the doctors say its possible with me as my limbs

are so 'tiny' .

I am yet feeling confused as have so much to grasp and understand yet .

You have all been so lovely and welcoming with your replies .

Am learning from them and you all 'already' .

Many thanks - Anna29

[february]

Hi Again Anna, I am not diabetic. Sounds like you are very much in control of that, which is a good thing! Glad you are learning from all about ataxia! We can all learn from each other, which, to me, is comforting! You are not "alone" in your journey! Hugs..., ;o)

[Anna29 in reply to february]

Thanks febuary - ((((hugs back))))

[wobblybee]

I'm not diabetic but my elderly Uncle has coped with it for many years and I know how challenging it can be.

Obviously we need to be guided by the experts when it comes to our own individual conditions but, in answer to ' is sensory ataxia progressive? '. I googled this and the

majority of information available seems to confirm it is.

A lot of information on-line can be misinterpreted, we can twist it to try and diagnose ourselves. SCA is confusing, frustrating, exhausting and at times a nightmare to live

with. Perhaps if Neurologists were more supportive with information etc patients would be less stressed and better able to cope.

It's not easy getting expert advice on a rare disease, sometimes the most useful help

can come in the form of peer support.

Best wishes xB

[Anna29 in reply to wobblybee]

My hubby googled this one too - he says the same as you do .

Oh well one fine day many many years away - I may finally take

a peek at a Rollator ?

Until then I will determinedly keep going !!!

The worst of this all for me - is the wretched tiredness .

Am so easily exhausted it is exhausting and embarrassing !

Some HCP (healthcare professionals) are loathe to reveal all things

about ataxia - we learn more from each other perhaps ?

[LBenyon in reply to Anna29]

I think asking questions which we have learnt from each other is a good thing? as the doctors don't tell us that much do they? Lorraine

[LBenyon]

all I know is that I have ca,the consultants cannot say at which level or number I am therefore I have just been told it is progressing normally and nothing to worry about!!!! I also have Rhumatiod arthrist so the consultants are continually blaming each desease I have for any problems with my body which do arise!!!!! so I just get on with life knowing things will get worse for both illnesses? Lorraine

[february]

Hi Again Anna, I would think your "stick-thin tiny limbs" are a result of your Rubella, not ataxia, although this is just a guess. Sounds like something to ask your neurologist. Also, I think we don't get all the answers from our neurologists regarding ataxia, because they simply don't have the answers. Ataxia is rare and research is still in it's infancy. Kudos to you for your fighting, feisty spirit, as you have so much to deal with! You go girl...,ha! Hugs..., ;o)

[Anna29]

Hi gals/guys

Just an update really , yep my tiny stick thin limbs are from my 'still decompensating rubella' (neuro consultant says)

The sensory ataxia is certainly slowly making its progressive prescence in my everyday life , with worsening balanace, co-ordination, speech and spelling things wonky !

Mt futile attempts at doing a little gardening found me hugging our tree and in the plantpots - honest ended up IN them ... So hubby 'has' to do gardening now .

Whilst I command my order's to him and watch from a chair (with a drink in hand)

Walking and my gait plus style of movement has slowly changed too .

Had to have grab rails installed plus seats in kitchen and bath installed .

Am bouncing about more with a wider step gait , gibbering away with frustration and

less patience . Developed a lop sided walk also .

I must look quite odd and daft when walking about .

Cant walk my little yorkie doggy anymore on my own - hubby has to be with me .

Will need to use a crutch soon plus take a look at rollators soon

(want a snazzy silver one) .

I do find any fatigue or tiredness simply makes the ataxia mobility and balance worse .

So I have to make sure I get rest when its needed .

It can be a catch22 - the ataxia tires me , little muscles/limbs sheer effort needed

to move tires me .

Then when - get about to do things - - this will tire me for certain .

So its a full catch22 loop of round and round we go !

More (nerve n muscle tests) show there IS a gradual decline so all my symptoms

match up to this completely .

Everyday I wake up and have to face same battles as yesterdays and the day(s) before these - I realise its hard and yet have another day to do .

How do you all - do it - and get through it ?

I really do wonder ?

It isn't an easy ride or journey is it ...

Would welcome your advice and help please folks .

[findlay66]

Hi I have the 3 wheeled walker so useful love my mobility scooter for a long ride in the countryside gives yo independence Looking into getting one like the Harley Davidson Bike!

[LBenyon]

2 years on I now am putting my trust in my new 4 wheeled walker with seat, as it feels safer for me,i am walking much slower and have been given loads of excercises to stregthen my legs but I must admit don't often feel like doing them as I have severe Rhuematiod Arthris as well as Ataxia, there are days I feel sorry for myself but others where I think just get on with what I have been dealt? I feel very lonely most of the times ,I cry a lot thinking if I could go out more I could meet and make friends,but what with relying on getting around on my mobility scooter,making friends and travelling are very difficult for me, moan over x