A

[Amynah]

Hi, Everyone is telling me to be positive --- so here is my first try... My mum gave me spinocerebellar ataxia type 1. Baclofen and Amitryptaline are my best friends. Daily exercise is my work mate. Balance, coordination and leg jerks are my unwanted relatives that come everyday. Meditation and healthy diet are my good relatives that visit me sometimes...That makes me A

[neta]

I am also told to be positive. But why and how? Are all chronically ill people told this? Is CA an illness or a mental state? Western medicine or Eastern (such as acupuncture, meditation, etc,) What works? Is there any end to the "fall"?

Best wishes, N

[HarryB Administrator in reply to neta]

Hi Neta

Being negative makes living with and managing the symptoms of ataxia so much harder. However there is no rule book as to how to be positive. This will be different for everyone. We all need to find our own 'thing' as to what makes us feel good and enables us to cope as best we can.

Harriet

[neta in reply to HarryB]

Yes, well, being positive about this mess itself can be challenging. I wonder if other individuals stricken with something equally debilitating have been advised to be happy about it. I live with so many lies (cabbies, strangers who ask 'what happened?') that I cannot imagine one more will change anything. What would make me happy, is to know that there is a cure on the way and that someone else knows what this is. Its been (for me) 6 years since diagnosis and its been very difficult and mystifying. N

[angelite in reply to neta]

Hi Neta,

Have you been offered any physio or occupational therapy ? Or a talking therapy ? Do you belong to any 'brain' groups, maybe there is a local one near you ? An ataxia group would be the ideal of course but you might find another kind of people with degenerative conditions, MS etc could be useful, as they may share some of your symptoms and have coping strategies for dealing with worsening problems. Sometimes it helps to have the company and support of others who are going through a similar experience and can empathise with your situation. x

[neta in reply to angelite]

Dear Angelite,

Thanks for getting back to me. I think some of my problem are due fto the fact that there is a great deal of confusion in my care. Neuros, is seems to me, are hooked on drugs and hard Western medicine and really dont give a hoot for dietary changes' or dont quite believe in them; PT's are into their own thing and then there are various other voo-doo types. Recently, my cousin gave me a name of a woman who has some sort of disease similar to mine, so says my cousin. I think this gal has some sort of group

[PGee]

Hello Amynah, Your mum couldn't help her genes, bless her.

Why do you find baclofen and amitryptaline work well for you? (I tried some medication but it made me feel worse).

You list the other things, like a family - and like a family, they come in all sizes and shapes, personalities etc. You are very clever! I would use a "dog"... hairy, long haired, friendly, aloof... but that doesn't work as good as yours. Get back to me about the medication will you? Thanks.

[Amynah in reply to PGee]

Hi

I have baclofen 35mg a 3 times a day - for muscle spams and Amitryptaline 10mg for headaches.

[HarryB Administrator]

Hi A

It is very important to be as positive as you can. Being negative makes living with ataxia so much harder. I have had cerebellar ataxia for 25 years (I was 40 this year) and think I am reasonably positive! Of course we all have our down days but it is how you can take yourself out of these that counts. That will be different for all of us. Part of yours is your sense of humour that came through in your post. I loved it-keep going!

Harriet

[klazien]

Did your mother know before she became pregnant with you that there was a possibility that her faulty genes would be passed on to you? Do you also say that she gave you good/bad looks, high/low intelligence, any positive/negative character traits?

[wobblybee]

For me, it helps to just 'go with the flow'🙂 My symptoms have been apparent since the early 1990s, they've progressed pretty much as anticipated.

Once I 'adjusted' and learned to co-exist with anger/ frustration etc. coping became more tolerable🙂

It is really down to finding your own way of coping, constantly being at war with yourself is exhausting, and Ataxia on its own is tiring enough😏

Above all else, I'm thankful I still have my sense of humour🙄xB

[Iain_100]

As Harriett knows only too well herself, being positive makes ataxia easier to deal with.

But there's a huge difference between dealing with ataxia with a positive frame of mind, and being happy about it.

I like to think of myself as a naturally positive person. Being positive about my ataxia, and accepting a future of ever-diminishing physical abilities does make it easier for me to cope with ataxia. But I'm far from happy about having ataxia in the first place.

But it is what it is.

And how anyone copes with it, is completely personal.

And TELLING somebody to be positive, is like telling someone who is suffering from depression, just to "snap out of it".

It is completely wrong.

So I won't.

But good luck.

[Amynah]

Thanks for all your replies. I will try to answer your questions:

- my mum did not know she had ataxia - she was never diagnosed and she has been dead for 18 years now. I found out from testing.

- self healing meditation does help me - You will find many examples on Utube.

[Pec2884]

You are quite right Iain_100 . One can't be positive just when told to be. I am either positive at times when I forget MSA has a 5-9 prognosis on average. Then reality sets in and dark depression hangs over me. Then after some Pilates the smile is back until the next time. So each of us finds the crutch we need @amynah. Hang in there.

[angelite]

Hi Amynah,

I think with any disability, there is a grieving process. We grieve for our lost ability, for our changed lives, for our old selves and the way things used to be. With a single one off condition, such as a brain injury ( which is what I originally thought I'd had - Encephalitis ) there is the knowledge that things will stabilize and improve to some degree. With a degenerative condition ( which is what it now looks like in my case since a relapse - underlying MS ) there is the prospect of worsening and further disability to contend with. So I think the grieving process can become an ongoing state.

Having said that, I feel there is much we can do, in spite of ongoing difficulties, to make the most of our situations. I have certainly found that keeping mind and body as active as we can comfortably manage can help us to retain our present skills and may also help to reroute some of the damage and improve our deficits to some degree. I feel that accepting our conditions and being prepared for possible future problems is key. This makes me even more grateful for the here and now - never mind what I can't manage , just look at what I CAN do ! : )

Adapting around disability is an artform in itself - many ways to get a job done besides the conventional methods ! Even walking can be a work of art but the right tools to keep us steady, support weakness and lessen fatigue can allow us to go further for longer. Wheels are another tool that can give us independence and enable us to participate. Us humans are feisty, adaptive, problem solving creatures on the whole ! As we learn to adapt we find out just how creative we can be.

For me, a disability that came on later in life means that I had the opportunity to enjoy 45 years of relatively normal function - how lucky am I ? If I had been disabled from birth, I would never have had the chance to experience this. So rather than dwell on the unfairness of having had some of my abilities taken from me, I like to think how lucky I was to have been given them in the first place. Old age and it's accompanying various limitations comes to us all if we live long enough - we just have to deal with various limitations earlier than anticipated !

Glad the meds are helping and your exercise, diet and meditation sounds ideal.

Take care,

Angela x

[wibblywobbly]

I totally agree with angelite.

I now have some very strange ways of doing things but I don't care that I look odd at least I'm doing them.

For example last time I went to the beach (2 years ago) I crawled on all fours to get in and out of the water. But who cares - I managed to get in. However walking on the beach was def a big challenge and exhausting.

I manage to stay positive and often laugh at myself. Unless I really hurt myself! I walked into the door frame the other day instead of through the door and had a bruise on my nose and forehead, but I thought it was really funny 😁. Maybe I'm warped!

I lose my positivity however when I'm tired. So I find it essential to how my 2 hour afternoon sleep everyday. Sometimes I don't really sleep but I still go to bed, get under the covers and doze and read a book.

maybe a counsellor could help you. I had one from an association for disabled people (APF in France). She really helped me

I also try not to think to far ahead in the future. We don't know what it may bring but neither do the doctors. So I try to think it's all a maybe so maybe it won't happen

anyway good luck to everyone at keeping positive when we can

Alison xx

[Amynah]

thank you Alison

Just what I need.

I am glad you mentioned a two hour nap. I too have to do it but then I feel guilty, so I try doing an hour with an alarm - but realistically speaking - I feel much better after two hours than 1 hour.

what do you do to get up in the morning - I find it such a chore and I wake up at 8am and it takes me 1.30 for ne to get up at 9;30. Everyday is a battle.

[Litty]

Some brilliant replies.

2hr sleep in afternoon essential. Counselling if you are that sort of person (I am too shy).

I have SCA1 off my Dad and it is not fair. Very suddenly some friends and relatives died a few years back and it made me realise that at least I am still here. Also we are so lucky it does not attack us mentally too.

Everyone gets bad days. TRY to find a hobby that you can adapt. Everyone has something they enjoy. Mine is ceramics. When I had finished bringing up my kids and I knew I had ataxia coming and remembered I loved art at school. I did an art foundation and discovered I enjoy working with clay. I used a medical insurance payout to get a kiln and make a tiny bit for Ataxia UK with every sale.

I use a walker around the house and a wheelchair when out but i have discovered that I can ballroom dance with my husbands help. We have an hours lesson most weekends and it is great exercise. We had not tried dancing until about 5 years ago.

Good luck with it all : )