Dr Thomas Clouse

[nigelrheath]

I see Dr Clouse has produced his 2nd edition of his book. I know it’s based on his own experience with ataxia but at $50 it seems quite pricey.

Has anyone worked with Thomas or got his book and if so what is the verdict?

Nigel

[wobblybee]

I’ve seen enthusiastic posts from people in the US...but haven’t considered buying it myself

[Guardsman68]

Hello if I’m honest I haven't heard of this book but I haven’t really read much yet on ataxia still new to me and got to get my head around it. But once I have I’ll take a look. Stay safe

[Amynah]

Hi I don't think ataxia is curable, the exercises he suggests are same as physio - I read about him ages ago and decided not to pursue because he is making money business from ataxia desperation to get better - but no matter how much money we spend we are never going to rid of ataxia. My mantra is mindful eating and daily exercise. Good luck and sorry for my outburst. Stay safe

[nigelrheath in reply to Amynah]

Pretty much my thoughts. I saw a physiotherapist and was struck by her need to rehabilitate me, when what I wanted was ways to accommodate my slow deterioration. I agree with you that careful diet and regular safe exercise is our best hope of getting the most out of life. Rants allowed on here, it’s a safe place to let go.Nigel

[Amynah in reply to nigelrheath]

Thanks for understanding

[february]

Dear Nigeirheath, I just bought the book today! I've never seen Thomas Clouse, although he has an excellent website! As you know he was a practicing doctor, but had to retire because he has ataxia (SCA) himself. He travels around the country (USA) and works with people. You can find him on YouTube and I think it's pretty amazing what he does to help people! Therefore, I'm very excited to get his book! My best to you 😊

[Frodocat1 in reply to february]

Hi February, I'm interested to hear if you are still enthusiastic about Thomas Clouse's book? I read an exert (quite a lengthy one) on Amazon and felt relieved and excited by what he has written. It is very pricey so I don't want to rush to buy it but I'm certainly tempted. This might be because I am in the early stages of ataxia at its onset is late as I am 68. Please would you email any further thoughts you have on the book and anything else ataxia related. Thanks . Julia ( frodocat)

[february in reply to Frodocat1]

Hi Frodocat1 (Julia), Yes, I'm still enthusiastic about Thomas Clouse's book! It's very good with a lot of ideas! I'm glad I bought it. It will be very helpful! I'm 68 also, but I've had ataxia 20+ years! I was diagnosed at 49 years of age with Sporadic Cerebellar Ataxia (idiopathic). I had extremely mild symptoms starting at 43 years of age. Over the years, I had genetic testing for the more common recessive types of ataxia, which was always negative. Finally, in 2017, I had genetic exome testing, which showed I had a gene for Niemann Pick C (NPC) disease. Therefore, I had a skin biopsy followed by a blood test , which showed my ataxia was due to NPC! My ataxia has progressed over the years, I use a four wheeled rollator now! Kindest Regards, Cindy (February) ;o)

[Frodocat1 in reply to february]

Hi Cindy, thank you for replying so readily. I have not been formally diagnosed with ataxia yet. I have a neurology appointment next month but as my sister had ataxia I am well aware of symptoms and possible aetiology. I seem to be in the early stages of ataxia. I am able to walk, now with a stick to help adjust from walking crookedly and still drive. I was tested for genetic ataxia when my sister was diagnosed but nothing was gleaned and my sister's type of ataxia remained unspecified. A question in my mind is what are the benefits, if any, of getting a diagnosis? Reading through posts on this site it seems people respond to their ataxia totally individually and Dr Thomas suggests that the plasticity of the brain allows for development of more positive outcomes. At the moment I am seeking the most positive ways forward and although aware of progressive deterioration, I don't want that to become dominant. My concerns of getting a diagnosis include both my memory of my sister's reaction i.e. she gave up & the concern that its easy to get sucked into a medical & more negative mind set. I worked as an occupational therapist for over 30 years in the NHS so am not without knowledge of approaches to illness. Sorry this is rather a long email. Julia

[nigelrheath in reply to Frodocat1]

Hi Julia and CindyTo jump right into your conversation, the very best way to deal with ataxia is to use your brain plasticity and own ingenuity to find your own ways of dealing with your own challenges.

My sister had ataxia and as someone who ‘enjoyed’ ill health gave up very quickly and used her condition to make life difficult for everyone else! As both of you are autumn chickens now it’s important to factor in natural aging conditions and separate them from ataxia. If you have high blood pressure for instance the doctor will give you a pill.

Thomas Clouse’s approach is very positive. I have spent quite a bit on gadgets and my all terrain wheelchair and also have my own knowledge as a therapist and psychotherapist to help me. I notice that my day is already very full and at 72 have less energy than I used to, given that moving is more tricky anyway.

Good luck to you both and share your findings with us, others doing well makes us all feel better.

Nigel

[Frodocat1 in reply to nigelrheath]

Hi Nigel, thank you for jumping in and responding positively. You're right about separating ageing process from ataxia. Its very encouraging to hear you remain active and engaged with life.Julia

[nigelrheath]

Hi February, I am sure you will get a lot of good ideas from the book. Coming at ataxia from a medical background gives Thomas a wealth of information to base his work on.Do let us know how you do.

Nigel

[isabelalfaiate]

The book on Ataxia,I was interested in buying it, I am a translator and offered to translate the book in exchange for a copy of the first book ($100) but he was not interested. He does have some info on the net " walking with Ataxia " and there is lots of his advice on youtube. The book is more than I can affford at this stage.

best wishes

[february]

Hi Nigel & Julia, I agree, Julia, with what you said about plasticity of the brain and more positive outcomes! I also agree with you, Nigel, on brain plasticity and your own ingenuity to deal with your own challenges! Julia, the reason why I wanted to get a diagnosis and to find out what kind of ataxia I had (if possible) was so I could talk to my grown children! Also, I find it comforting to be followed by a neurologist in case any 'new' news comes up! I find the best way (for me) to deal with ataxia is to concentrate on the things I can do, other then the things I cannot do! Also, doing a bit of exercise daily helps me, as well as eating as healthy as I can! I do tend to get frustrated at times and have mini pity parties, but they're short lived! I count my blessings (I have 7 grandchildren and will soon have 8) and don't have time to be down...,ha! I will post on the book when I read more of it! My best to you... ;o)