Jim Webb

[jakwebb]

Just been told by GP I have Ataxia, easily blames it on alcohol, doesn't on 2 head injuries sustained, stroke or questionable surgery I had 2001 - Vestibular Section

[wobblybee]

Hi Jim

Ask your GP to refer you to a Neurologist who specialises in Ataxia,

that's where you'll get the most reliable information.

It's widely accepted that alcohol abuse does cause Ataxia but then

so do trauma and genetic causes.

Sometimes, despite extensive testing, it just isn't possible to define

what type of Ataxia it is, there are about 60 different types currently

identified, surprising isn't it ?

Best wishes xBeryl

[jakwebb in reply to wobblybee]

Thanks, GP marred about something, has said he'll arrange physio for balance probs, have an appointment April with Neurologist I've seen a month ago who was unhelpful and didn't mention Ataxia. GP said I had been informed, but I have no recollection.

Son is a GP in W. Midlands says don't rock the boat with either docs.

Don't no how to move forward.

[wobblybee in reply to jakwebb]

Ataxia is basically lack of balance, lots of people have this

and no other problems. But Cerebellar Ataxia is different,

mine was diagnosed after an MRI showed Cerebellar Atrophy.

There are a variety of other symptoms associated with this,

which have varying degrees of severity.

The general advice is to see a Neurophysio, as apposed to a

general physiotherapist, if in fact Cerebellar Ataxia is the

diagnosis.

I've seen both, and as far as Cerabellar Ataxia is concerned

the Neurophysio was by far the most appropriate.

Usually at hospitals, patients are asked if they would like a

copy of any correspondence sent to their GP. I've always

said yes because I can never take it all in at the time. Perhaps

you can find a letter relating to the appointment with the

Neurologist, or you can always ask the GP to show you their

copy.

Your son is probably in the best position to give advice, he

must be very familiar with your circumstances. xBeryl

[jakwebb in reply to wobblybee]

To Beryl

I think staggering as if drunk is most of concern to me, I'm young in outlook but feel frustrated with myself. I'm the father/grandfather to mine but feel this damn condition is limiting my responsibilities. I need a holiday but don't know if I can cope.

Thankyou for all your advice, but I don't know about your area but here in the NW GPs and Hospitals seem loathed to spend on treatment, I'm classed as geriatric as I'm over 60 and they don't want to use their limited funds on over 60s.

I like you had scans after a stroke and recently after a fall, but no mention of A until I confronted the GP last week, the neurologist on my last appointment rushed through doing nothing except scrolling his monitor saying he would like to see my daughter as to what she thought I was like now and see me in 8 mths.

How long have you suffered, do you stagger with poor balance?

Been on NHS Choices to look for answers - it just worried me more (wheelchair bound was their prophecy) - not having that.

Sorry to go on this has poleaxed me.

My son can't see what the fuss is.

Take care, stay well x.

[2rayvon4 in reply to jakwebb]

Hi. in some ways I can empathise with you and share some of your feelings ie I'd like to have a short holiday but worry whether I'll cope. Also I get nervous when leaving the house in case my balance 'goes', which it has done on occasions. I am trying to come to terms with the condition, but find being positive easier said than done. My walking stick goes everywhere with me now, but I do worry about the future - and the prospect of maybe needing a wheelchair at some time phases me too. Fortunately I am still able to drive. I have found reading posts on this site helpful.

I, too, am in my 60's and have twice seen the neurologist in Hull. It was on my visit this April, two years after my first consultation, that he spoke of ataxia and degeneration of the cerebellum. I do not have another appointment to see him and, though my GP is understanding, I do feel I've been left floundering. I am glad I came across the website of Ataxia UK, but would still like a better understanding of my condition.

I am trying to come to terms with the diagnosis, but understand from what I've read that in can take some time. Being a worrier doesn't help!

Take care - and 'write' if ever you want.

Best Wishes, Ann

[jakwebb in reply to 2rayvon4]

Dear Ann.

Your story is similar to mine but seems like you've had some help and advice along the way. No such help has been offered, I'm feeling alone.

My GP and son also a GP do not seem to comprehend what my everyday life means for me, indeed my son has a grin and bear it outlook on the matter.

I live alone in a retirement complex, no-one here knows anything, this is a good thing hearing from you and I appreciate your post.

Any suggestions that could be of benefit would be good, thanks.

Let's have kind thoughts this morning for the family of Alan Henning.

His home is 3 miles from here.

Regards

Jim

[2rayvon4 in reply to jakwebb]

Hi, Jim

Yes,the death of Alan Henning is so tragic, as is that of others who have suffered the same fate. What IS is doing is barbaric. Living so near to Alan Henning's home must bring an extra poignancy to the situation. Did you actually know any of his family? Where is the justice in the world?

I will be in touch again.

Best Wishes,

Ann

[jakwebb in reply to 2rayvon4]

No love but used to eat in an Indian after working in a pub near Eccles when I was an apprentice.

Special rememberance services shown on Granada TV last evening.

The answer is to get Saudi Arabia and Qatar to stop supplying them and impose sanctions.

Going to GPs tomorrow for a showdown, if he cant initiate things then after 23 years I'll be changing Doctors.

[wobblybee]

Hi Jim

I'm 63, my symptoms began to appear when I was about 40.

Balance was the first issue, on turning quickly or after bending,

or reaching up with my head tilted back, dizziness would set in.

This went on for a few years progressively becoming more of

a concern, then I started to have eye problems. First thought to

be Conjunctivitis ( by my GP) , it turned out to be Iritis, this was

diagnosed in Eye Casualty.

Iritis caused double vision, this happened around 1998, I still

have regular appointments at the Eye Clinic and earlier this

year had an operation for Astigmatism. It has helped with double

vision but I still need a prism in my glasses.

Lack of concentration and poor mental focus are constant worries

for me now, my memory isn't good.

Being aware that poor balance gives the impression of being drunk

did make me feel embarrassed for a long time. Combined with

slurring words, and often just stopping in the middle of speaking

because my mind went blank, didn't help.

I was back and forth to my GP for years, becoming more stressed,

and depressed, of course this seemed to aggravate the symptoms,

it was a vicious circle and nobody really listened to me.

Personally, I feel that once a GP decides depression is the problem,

you're stuffed.

Eventually I began to have falls. A new GP sent me to the Falls and

Syncopy Dept at my local hospital (in Newcastle). Tests done there

resulted in me having an MRI, which showed Cerebellar Atrophy,

I felt vindicated. This was the root of all my problems, and it was

real, not imagined. That was in 2011

I now run a support group, just listening to other people describing

how they cope is of great value. Realising you're not alone with this

horrible condition makes such a difference psychologically.

There's a list of support groups on AtaxiaUK, they are throughout the

the country, so there very well might be one near you. If not, ring

the person who runs your nearest, you'll find help and support xB

[jakwebb in reply to wobblybee]

Your story is similar to mine and others, my son and GP don't seem concerned, as if it's really of nothing of concern for us.

Don't like the reading on NHS Choices, it seems the towel's been thrown in long since.

What do you believe is the prognosis for us all?

Take care,

Jim

[wobblybee in reply to jakwebb]

Mmm, I don't tend to think too far ahead these days Jim

Nobody understands how difficult it is for us because it's not a

disability that's understood.

GP's in general have little to no knowledge about Cerebellar Ataxia,

unless in as in the case of your son, they have a special interest.

I once asked a young GP if I could be tested for Gluten Ataxia, he

said there was Ataxia, and Gluten Sensitivity but it wasn't possible

to have Gluten Ataxia.

I insisted, then he looked on the Internet and apologised

Lots of people in the UK are also members of Living with Ataxia.org

which is a US online Ataxia support group. Very similar to this but

with many more members, as you would expect In fact there

are members scattered all over the world

You can browse the site without having to join, and it's quite active.

Lots of people feel that there's a real need for specific 'care homes'

for the want of a more appropriate description, for people coping

with Ataxia. When a person reaches the point where they can no

longer cope independently in their own home, no matter what age

they are, the only alternative is is to be housed alongside the elderly.

I do know some care homes take people suffering from MS, but

quite often the costs are prohibitive.

If I still had my faculties when had to leave my own home, I would

like to live in some sort of purpose built retirement community.

To have some privacy and independence but at the same time feel

there was a reliable support network in the background xB

[jakwebb in reply to wobblybee]

Let's not give in to it, let's go for it.

I worked for National Daily newspapers - loved it, I wont lie down, no surrender.

What did you do, did you enjoy?

Live for my kids/grandkids!

Enjoy music, have discovered some streaming websites so things not so bad.

Jimx

[wobblybee in reply to jakwebb]

You had a very interesting job since leaving school, I've

had a variety of jobs but it was only just as Ataxia began to kick in that I realised what I was actually good at

After getting married I worked with my husband building

up a new business (currently he designs fire alarm systems).

I held the office together between having two children, and

it stayed that way until my concentration/ mental focus

became a real nuisance.

Then I went to college as a mature student, I'd left school

at 15 without taking any exams, so I did GCSE and A level.

Then went on to do HNC in Fashion and Textiles.

Ataxia really began to take it's toll, I finished the last course

it was a real struggle, but I'd finally found something that drove me

Not to be beaten, I started taking patchwork classes then

traditional upholstery, then ceramics, then art, then felting.

Double vision/ nystagmus/ balance gradually made most

things unpleasurable. So, now I'm mostly a couch potato

with my IPad although I still like to knit and crochet (badly).

No grandchildren yet, my daughter got married last year

but my son is currently single (he tells us nothing)

Where would we be without the internet xB

[jakwebb in reply to wobblybee]

Good afternoon Beryl hope you're well today.

Bit better this afternoon, ropey on rising, better now, perhaps it's because MU are ahead against Everton.

What exactly is Nystagmus.

My son is 34 married with two girls, 5 & 3, Daughter 31, a career girl (no children) in a private Housing trust - no boyfriend at the moment.

Think I'll visit the GP this week and ask him to initiate some care ideas.

Birthday this week (67), got 3 dates to dine out, hope I keep up to it.

Had the internet for 5 years (laptop), yes you're right, it's the norm in everything. Some people wont accept it for their own reasons and won't have it that they need to learn. Have a facebook page and tweet occasionally (if something with the establishment riles me).

Just moved in to new apartment so loads to do, talk to you soon.

Take care,

Jimbo