Drunk?

[auntiesally]

I cry a lot, as I have no control of what is happening to me, only diagnosed 4 months ago.

[Holmej4]

Hi, so sorry to hear your upset. What type of Ataxia do you have? I'm sure you will find some comfort from speaking to everyone on this forum. X

[Hidden]

I cried too- diagnosed two years ago but had for about 10 years. Meeting other ataxians really helped and reading on this forum also. Admitting to myself that I am disabled (horrible word) was the first step for me and getting a rollator so I could get out of the house. x

[Mazieboo]

Hi Flooby

I'm to am only recently diagnosed. It's so hard to come to terms with and I spend lots of time crying. Just let it out, don't fight it when you're upset.

I'm 6 months diagnosed and finding it very hard to accept. All the physical and emotional change is draining. Be kind to yourself and 'lean' in to friends and family or to the good folk on here. We all understand in one way shape or form.

Stay strong and keep in touch.

Lis xx

[auntiesally in reply to Mazieboo]

What are your symptoms? X

[Mazieboo in reply to auntiesally]

I have awful balance to the point I can't wear heeled shoes, constant dizziness and feeling sick. Double vision sometimes, slurred speech and dry mouth, pains all over, arthritis in my joint but symptoms for people vary.

I hate the looks I get if I'm out, I walk with 2 walking sticks or a frame.

I can't play with my 3 year old nephew as I can't run hop or skip like you and he is too fast for me and that's heartbreaking for me.

I am so scared and my life is changing everyday and it's so hard to come to term with.

I've been part of this group for months but I have only just started talking to people because I was/am embarrassed.

Stay strong

Lis x

[auntiesally in reply to Mazieboo]

I can no longer jump, or hop, very sad when I am playing with our grandchildren, when we go out, I am quite embarrassed, incase people think I am drunk, having only been drinking soda, yuk, xx

[Sharon_g]

Hi Floppy yes it's hard I think we all shed buckets of tears. I been diagnosed in July so we in the same boat.I don't even know if we should be on medication. What type Ataxia have you got.? My advice for now read this site the people is extra friendly and everyone is so helpful. I even got people's email address. It helps to speak(type)☺hope you feel better today.xxxxx

[margaretm]

So sorry that you feel low at the moment. Be kind to yourself and try to take pleasure in simple things that you can still enjoy. You are not so much a disabled person as a person with a disability. You are still you and need not be defined by your loss of mobility. Everyone here is rooting for you! xxx

[glosman]

Hi Flooby, I have had ataxia for almost 40 years so should be used to it but it does still reduce me to tears particularly when you see people looking at you strangely or making snide comments. Sadly you will always have tearful moments but will learn to find the strength to cope -- I know that isn't great advice but its all I have. Importantly always remember this is your lowest point, you will get through it & carry on.

If you can find a local ataxia support group near you do join as that will be a tremendous help just talking to people who understand.

[isabelalfaiate]

Dear Flooby, I understand how you feel and there is nothing one can say to you to make you feel better because your mind is focussed on the ataxia. Look at these sites : ataxiafightback.wordpress.com/

and walkingwithataxia.com/

You may like to look at my previous posts, as I do not want to repeat them again.

My father and his sister had ataxia and about 30 years ago we were told that this disease affects boys only, so I never in my wildest dreams thought I could be a sufferer (although then my aunt was also on a wheelchair). It still did not ring a bell. My dad accepted the disease and never complained. In 2009 I was told to get a wheel chair and now in 2016 I am still walking around unaided. Just a few months ago, I could hardly stand, house chores were impossible (sweeping the floor etc). Then I bought a minibike, and noticed I was improving, since then I have increased my exercise routine including Physio therapy and now at home I am totally independant and do everything. So focus on the good things you have, and try to improve what you can. See life as being able to cope, even if it is a little different. I have had symptoms from 2007 but the diagnosis was only made in 2013. In many ways I am actually better than 2009 so there is light at the end of the tunnel. I joke alot laugh at myself and that helps me. I say I have ataxia a "regenerative" neurological disease. Parts of our brain are supposed to be able to learn to perform functions previously done by other parts of the brain. So I choose to work on that. I am not a victim I am working towards being victorious. If you need some positive influence you may email me at [e-mail] . Meanwhile keep cheerful and smilling.

All the best

Isabel

[Sharon_g in reply to isabelalfaiate]

My friend,Angels comes in many form's. ....

[february]

Dear Flooby, I'm so sorry you're feeling low! What kind of ataxia do you have? I have Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7), diagnosed twelve years ago, although I had very minor symptoms starting about eight years before diagnosis. I still cry (out of frustration) at times, but try to have a positive attitude. Ataxia doesn't define who you are! I find exercises for strength and balance, as well as eating as healthy as possible helpful! If you don't use it you lose it, as my neurologist always tells me! Others on this site have given good advice and hopefully it will help you to know you're no alone with this! I use a cane when I leave my home (about six years) to prevent falls, but am still able to walk, extremely carefully, in my home without it. It will take time to accept your diagnosis, but eventually you will, as this is your new "normal". Find pleasure in what you can do, not what you can't! You have more "control" over what is happening then you think! Exercise (it's easier for me to do on the floor or while sitting in a chair), physio, eating healthy and a positive attitude, as well as sites like this, are invaluable. Although ataxia is frustrating and challenging, try not to let it get you down, although it's more then alright to cry or feel badly at times! Be kind to yourself! My best to you..., ;o)

[auntiesally]

Mild cerebellar ataxia, b12?? Thanks for your kind words, am so fed up and angry, grrrrrrrr x

[wibblywobbly]

hi wobblye,

[wibblywobbly]

hi wobbyle,

I completely agree with all the advice others have given you.

it is completely understandable to be crying frequently. These days we think there is a cure for everything so it is somewhat a shock when we receive diagnosis.

however there are things you can do as mentioned by others. Exercise, ask to see a physiotherapist regularly, eating well and finding pleasures in life. I find pleasures come from things that I overlooked before. Often quite small things.

also I feel we can still do many things but in our own way. Sometimes this may look strange to others but why should we care what they think. We are living with this illness not them! I don't give a damn now what people think

I walk with a cane when I go out, even if it's just in the garden. In the house I manage without one. I also have a light weight electric wheelchair for any distance. It's really good for going out with others and was a big relief to get it - a new sense of freedom.

the other thing that I've found really important is rest and sleep. I sleep every day for two hours in the afternoon. Obviously I make exceptions if there is something wonderful to do but not more than once a week.

after about two years of struggling with coming to terms with my different life I saw the Dr for antidepressants which I'm now weaning myself off of. The problem with depression is that we stop fighting and then the illness may accelerate more quickly. However as someone else said with exercise and positiveness we can move forward again.

life is different. I find to tell and explain as best I can to my close friends and family really helps. They have all been wonderful and have encouraged me to socialize and do whatever I can.

Give yourself time, and be kind to yourself. Once we have accepted our illness life becomes a whole lot better.

we can fight back at this illness. There is a light at the end of the tunnel.

enjoy life and do look at the walking with ataxia site that was recommended.

we are all here for you so please do post whenever you want.

my very best to you

Alison xx

[wobblybee]

Hi All 😊

The very best thing to do is educate yourself about the condition itself 🙂

Look at reliable sites like ataxia.org.uk and ataxia .org and ataxiacenter.umn.edu

The second link has useful Fact Sheets, including Medications for Ataxia Symptoms 🙂xB

[bevvick1964]

Hi wobblye

I'm sorry that you are feeling so low. I can totally empathise with you as I've been there myself.

I have hereditary SCA6 diagnosed in 2013 but had symptoms for about two years prior to the diagnosis. I cried for weeks, attempted suicide, went to the nut house twice for six weeks at a time ending up with tons of antidepressants and pain killers and feeling like a zombie.

I eventually decided to reduce my medication and get some counselling.

He was brilliant and although he made me see that I'll never accept it or come to terms with it, I look at my life where I am now. I am the same person just different than before. I think this every day and although I still get upset and tearful and frustrated, I can't change this so I cope with it. No I can't dance, skip or jump but I can still do so much. Funnily enough, I can jump in the water.

Remember, you may have Ataxia, but it doesn't have you.

[e-mail] This is my email address if you need to talk or any help I can give. You don't need to be alone. I'm Bev and I'm 52. Chin up xxx

[auntiesally]

thanks, I really. don't know what lies before me ,

x