Introduction.

[ladyntramp]

Hi everyone, I have just joined up today. My name is Barbara - but you can all call me ladyntramp, these were my two dogs. I have Spinocerebella Ataxia (SCA) and as it is hereditary I guess I have had it since I was born. I wasn't diagnosed until I was 50, but looking back over my childhood and earlier adult life I suppose it had always shown itself at different times, but as I was unaware of it I just thought I must be getting clumsy and slow, while other people just thought I was drunk. When people finally realise there is something wrong and they ask me about it I am able to tell them that it isn't painful, unless of course I bang into the wall or fall over. Well, I always say you have to look on the bright side - but is there one?

[wobblybee]

Hi ladyntramp, welcome😊

I'm having a reasonable day, so there is a bright side😉

Looking back, I suppose I can say there were some odd moments I could pinpoint long before any disorientating symptoms took hold🤔

Mine may be genetic too, I've recently had another test, for Episodic Ataxia.

Most of us with ataxia have been thought to 'be inebriated' 🙄 It certainly doesn't help if you also slur your words😏 But, we have to rise above such comments😉 xBeryl

[popepjp in reply to wobblybee]

I have Episodic ataxia also

[wobblybee in reply to popepjp]

🙂Do you know which type? I can definitely see a 'sort of' pattern to mine. Deep fatigue in particular really floors me. Just this morning I was exhausted after breakfast😏 and slept soundly for a couple of hours. 🤔xB

[ladyntramp in reply to wobblybee]

Hi Wobblybee (Beryl),

I just love your user name, very apt! Sorry I didn't get back to you any sooner but my silly computer crashed and I had to wait for my IT man to repair it. Wow, it is bad enough to have ataxia all the time but at least you know what to expect, and when to expect it. This Episodic Ataxia is not nice at all as it seems that things go awry when you think you are having a good day. I hope when you get the result back you do not have episodic ataxia. Best wishes, Barbara x.

[Nottscounty1862]

Hi ladyntramp.i have heredity sca as well.it was only noticeable when i got in my 40s.people think im drunk.😒

[ladyntramp in reply to Nottscounty1862]

Hi Nottscounty1862, thanks for your reply. My computer crashed so I had to wait for repair man else I would have got back to you sooner. Seems to really get to us all in our middle years, I was 50 when diagnosed, my cousin was in her 40s and her son who is now in his 40s has just recently been diagnosed too. Yes it runs in the paternal side of my family but not all of the family have got it - some have been fortunate and missed out. I don't like being called drunk when I haven't had a drink; but then it is their problem and not mine. Bye for now, ladyntramp.

[isabelalfaiate]

Hi ladyntramp

Yes there is a bright side? we are alive, it is not painfull, it is slow. When I am sitting it feels like I am well. The secret is be happy all the time, depression and worry does not help, so why waiste time. Enjoy what you can do forget about what you cannot. Look forward to anything positive each day. Before you go to sleep think of your achievements and things you enjoyed that day and look forward to the good things that tomorrow will bring. Count your blessings all the time. Ataxia is a fact, it will not go away so do not waste time thinking about it. There are better things to think about.

Be cheerful, best wishes

Isabel

[ladyntramp in reply to isabelalfaiate]

Hi Isabel, My granddaughter has that name - nice name. I like your idea about positive thinking. That is me all the time, well most of the time anyway. I always try to look on the bright side of things. Most of the people around me are also positive people and I find that helps so much. The only time ataxia is painful (so I told a friend of mine) is when I walk into the wall or fall over; that is when frustration really takes hold. If I can't do something I do one of two things - try to do it another way or just ask for help, tomorrow is another day and I may be feeling better then. Stay happy, Barbara.

[pammyann]

I totally agree with Isabel. I have SCA6 diagnosed 12 months ago at the age of 70. I enjoy my life, try to take as much care as possible, go for walks with my husband and my rollator and generally have fun! I will not let my condition rule my life! Yes, I look on the bright side!

[ladyntramp in reply to pammyann]

Hi Pammyann, I do enjoy life, even though falling and bumping into things can sometimes be frustrating. Sport (mainly netball) and walking were two of the things I used to like to do, but of course sport is not for me anymore but I still like to walk, a lot slower these days. I was diagnosed when I was 50 but looking back I can see that it had always been a part of my life.

[poolboy]

Hello everyone and welcome to ladyntramp. It seems to me that all we can do is to think positively. I have SCA6 and I am still able to walk miles unaided and work out. I don't use a stick or a frame, I have balance issues, and I vehemently believe it is down to positive thinking and looking after yourself.

[isabelalfaiate in reply to poolboy]

Hi Poolboy,

Yes it is fantastic that you are so mobile. I strong believe in the power of the mind - mind over body - Read Dr Bruce Lipton's book "the biology of belief" You will find al the details in brucelipton.com/ .

Keep the right attitude.

Best wishes

Isabel

[Chinquecento in reply to isabelalfaiate]

Hi Poolboy

Thank you for recommending the Bruce Lipton books.I have ordered 'The Biology of belief' from the library and I can access them on Amazon.I look forward to some good reading!

[ladyntramp in reply to poolboy]

Hi poolboy, thanks for the welcome. I now use a walking stick when I go out and unfortunately have to use a trolley at home now as my balance is terrible. For years I wouldn't give in to using a stick but had to give in to using it when I nearly fell over when crossing the road. So I hope you can continue to go through life without a walking aid, but don't let pride get in the way of practicality, after all it's better to be safe than sorry.

[poolboy in reply to ladyntramp]

If I am really honest I know the damn things going to get me in the end. All I am trying to do is to last as long as I can , and do whatever I can to lead as normal a life for as long as possible.

My mum has SCA6 and we were diagnosed at about the same time. Mum decided that she was going to do nothing and let it consume her. She can hardly move now. I am not for a moment suggesting my ethos is right , but it does seem to help me.

I do sincerely hope that things are as good as they possibly can be for you. Best wishes . Steve

[ladyntramp in reply to poolboy]

Hi poolboy (Steve), very sorry to hear about your mum. My dad had it so bad he could hardly walk anywhere and never left his flat. I may be slow but am still active, as much as I can be. A positive mind and a mobile body seem to be all we can do for ourselves. Keep happy. Barbara.

[wildstyler]

The bright side is whatever you make it !

Don't stop doing what you normally do, perhaps do things differently, but still do them. Focus on what you can do, not what you can't. I think I might have an advantage in that ( according to my wife ) I have always been clumsy.

Just live with it and get on with life.

Remember, you might have Ataxia, but Ataxia doesn't have you.

[ladyntramp in reply to wildstyler]

Hi wildstyler, Great attitude! Keep it! I do try to stay positive, and thankfully I am surrounded by positive people, so that helps greatly. I do what I can, sometimes try to find another way to do things I have problems with, and if I find I simply can't do them - I am fast learning to ask for help.

[wildstyler in reply to ladyntramp]

Keep on doing that.

[february]

Dear Ladyntramp, Cute names for your dogs...,ha! A HUGE welcome to this site! I have Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7). I try to have a positive attitude and relish in the things I can do do, as opposed to what I can no longer do! I exercise for strength and balance and try to eat as healthy as possible! Ataxia is very frustrating and challenging, just do the best you can! Remember, a woman is like a tea bag, as she never knows how strong she can be until she gets into hot water...,ha! My best to you..., ;o)

[ladyntramp in reply to february]

Hi February, Thanks for the welcome. Yes, cute dog names for cute dogs. I do miss them. My outlook on life is also positive, and if I am having difficulties in doing something, I either look for an alternative way to do it or I ask for help. As I have always been very independent having to ask for help doesn't come easy - but I am learning. Like your saying about a woman being like a tea bag, I don't think I've heard that one before, but I sure will try to remember it.

[Veteran250]

Hi Ladyntramp.

Always better to look on bright side, I always do, you know what the problem is.....I was once told.....cry and you cry alone, but laugh and the world laughs with you

Keep laughing.

Don.

[ladyntramp in reply to Veteran250]

Hi Don (Veteran50), You sound like my father, he always said Keep laughing, and that is just what he did. It couldn't have been easy as he lived alone for 40 years, and he must have passed on his happy genes as well as his ataxia genes. I do always try to look on the bright side of things - because if you just look around there is always somebody who is worse off than yourself. Keep laughing and people will wonder what you have been up to. Wouldn't they like to know - shh! it's our little secret.

[Veteran250 in reply to ladyntramp]

Hi Ladyntramp......you sound like a lady after my own heart.

Makes me wonder what your dad got up too....lol.....

[Hidden]

The bright side is you don't need to drink much to feel drunk, or that's my experience anyway! I don't drink but when I did, I only had to have one or Two - also I walked straighter! There aren't many Benefits I suppose but at least seeing as I've had problems like this all my life, (even though I was only officially diagnosed at 27) I don't know what it'd be like to be 'normal'. This is my normality, everyone else is weird! Unfortunately the world is set up for the weird ones and we've gotta fit in.

[poolboy]

There seems to be a lot of people on here that used to drink , but don 't anymore. I am one of them. Is it because of being diagnosed with Ataxia or is there another reason ?

[ladyntramp]

Hi Poolboy, I don't know about anybody else but the reason I only have an occasional glass of wine is because people already think I am drunk so if they see me with a glass in my hand they definitely think that is my problem. Apart from that I find drink affects me very quickly now, so just one glass now and again is my lot - probably about 6 a year. I don't miss having more because I have never been a big drinker and anyway I realised years ago you don't need booze to enjoy yourself, with the right attitude you can have a really good time without it. Hope I haven't offended anyone because I certainly didn't intend to. All the best, Barbara.