Coping with deterioration

I was very moved by Jaqui’s post, in the early days after we have come to terms with the diagnosis, (why me?) symptoms are copable with and we find work arounds, use sticks, furniture and rollators or scooters and wheelchairs. But then it becomes harder to ignore the clumsiness and slurred speech, the ever present fear of falls and the reaction of family and friends, some are great and some just can’t cope with seeing us anymore. All this so tiring and not good for our mental health.

Then we have Don, with his sense of humour. Wobbly bee always there for us with information and research, Harriet watching over us and wibblywobbly sharing her up and down moments.

I’m lucky to have a loving and supportive wife. We are not rich neither are we poor. I know a lot about how the brain and body work based on my career as an holistic therapist. I have ‘toys’ to keep me active and busy, scooter for local trips, wheelchair for bus and train and great support from my local gym and my children and grandchildren. My hobbies of toy making and growing bonsai trees (a hobby I’ve had for over 40 years) give me pleasure. I have also not been too proud to ask for help and have recently started with a speech therapist, remotely on my iPad.

I suppose my message is that there’s help to be found, both here and out in the larger world, but here we all share similar experience and will try to understand each other and provide comfort based on that shared understanding. It’s okay to admit that life is now more of a struggle. Finding fun can also be harder, keep looking and my love to you all.

Nigel

[claire01]

I echo everything you say 😊

[Aslin]

Just wanted to send you big hugs.. its a horrendous disease, both emotionally and mentally demanding for the patients and their carers/family..

[Hidden in reply to Aslin]

Thanks, hugs always welcome xx

[ddmagee1]

Nigel, thanks for your heartfelt message! Don’s humor keeps us going, wobbly bee keeping us informed, and the rapport we have built with each other, being understanding and supportive of each other, makes dealing with Ataxia, for me, a little easier, to cope with! I know I can always turn to my fellow sufferers of Ataxia, on this forum, and feel uplifted! Thank you, all, for all your support!!

[PatsyIpswich]

good to hear .. thank you for posting xxx

[Hidden]

Comforting to know we are not alone. Thanks for a bit of cheer. By the way where is Don?

[Amynah]

Very well put👍

Can you please let me know the website of SLT therapy that you are doing?

Thanks amynah

[Hidden in reply to Amynah]

Hi Amynah

I went through my GP to get a referral, so it’s basically nhs, though it’s supplied by Hobbs Rehabilitation a private supplier. All done online, which I find tremendously convenient.

Nigel

[Amynah in reply to Hidden]

Thanks Nigel I am planning to request my consultant for it.

[Hidden]

Hi Nigel,

This is a lovely post and shows the connection of this community here on HealthUnlocked. I would like to write an article for the Ataxia Magazine about HealthUnlocked and how it can benefit people affected by ataxia (through its community feel and finding people in similar situations). Would you be happy for me to use some of your wording please?

Thanks,

Leanna

[Hidden in reply to Hidden]

More than happy, go for it.

Nigel

[Cubsfan]

Thanks for the wonderful post Nigel! All the best to you! For me a very difficult part is losing family and friends who can’t comprehend my situation, but I’ve been fortunate to have others who have entered my life. I recently had a 7 month stay in a rehab facility after a fall and one of the attendants there had many Bonsai creations in the garden. We became friends and I want to start my own Bonsai projects someday soon!

[Hidden in reply to Cubsfan]

Happy to offer ideas on ways to start with bonsai. It’s easier than you might think.

Nigel

[Cubsfan]

Thanks Nigel! Any tips would be much appreciated. I was hoping to move into a small house with a small garden when I was discharged from hospital, but my niece mucked that up for me. So now I’m in an apartment with a small balcony. I will need to start small. I’m still housebound so anything I may need will have to be purchased online or my caregiver will help find needed things for a fun project!

Thanks again

Robert

[ww-wibblywobbly]

A wonderful post. You say it all really and I'm sure we can all relate to this.

I'm so thankful that I found this site. The comfort and support of others in the same situation is so important.

Good luck with your speech therapy, I'm sure you'll quickly see progress.

Sending you hugs

Xx

[carol31271]

Lovely post, rang true with me .I feel less alone especially as I deteriorate, particularly with speech.

[Hidden in reply to carol31271]

Hi Carol, I have recently started speech therapy and it’s proving invaluable. The first thing I learnt was to speak from my diaphragm not my throat! I used to teach people how to breathe properly so it was a revelation to me that I had overruled my breathing to control my voice consciously. Now I have more time to get the words out and I have more control over volume and pitch. My wife is pleased that I have stopped ‘shouting’ at her.My therapist said I should tell more jokes, my jokes have always been stories and involve accents.

So the first thing is deep belly breathing and only speak on the out breath.

You are not alone and we are the best people to help each other.

Nigel x

[carol31271 in reply to Hidden]

Thanks Nigel, for your warm words some times I do go either too loud or too quiet and I must admit I hold my breath a bit. When did you see a speech therapist? seems quite difficult to see anyone at the moment. Trying not to feel too down., looking forward to hearing one of your jokes!

[Hidden in reply to carol31271]

Hi Carol, the jokes only work face to face, zoom etc. Message me and we’ll meet online for a joke.Nigel

[BrettDarby]

I did some too a couple of years ago. Mine was via Skype, an advertisement in the ataxia mag.

[BobR47]

Great post Nigel! Sounds like you have it figured out and are happy. I’m a little more than 1 year in, 73 years old, lived a great life before cerebellar ataxia and can’t find that corner to turn, or maybe don’t want to find the corner. What’s next for me?

[Hidden in reply to BobR47]

Hi Bob, the early years are a bit focussed on what we can’t now do and future plans that have to be changed. This is tough, there’s days of anger, self pity and depression. In these early years really focus on what you can do, find ways to keep exercising safely (gym), online classes etc. walk when you can. I used two walking poles to help me lengthen my stride and keep my gait wide. If needed use a rollator rather than a wheelchair.What hobbies can you reserect? Or now start, which previously you had no time for. Find things to keep your mind active. Now I have had to slow down I have more time to appreciate the world and nature around me. A hidden benefit! Talk to your partner if you have one, or find a friend who can cope with your changing condition, my best friend couldn’t.

Above all keep pushing yourself and at 73 be clear that some problems are age related and should be referred to the doctor, not everything is caused by ataxia.

If you’re interested in talking with me, send me a private message and we’ll swap numbers. I use various video methods to keep in touch with my grandchildren and with far flung friends, so that’s an option too.

Hope this helps, there is more. In my early days I produced a website full of tips Ataxiafightback.Wordpress.com

Nigel

[BobR47 in reply to Hidden]

I'm interested in talking with you. Not sure how to do the private message. How does that work? I have used FaceTime (Apple) and Zoom, I think.