I was diagnosed with Ideopathic Cerubelar Ataxia in September 2016. Although this didn’t prevent me from working abroad the last two years, it does seem that my twenty-odd teaching career has finally come to an end with a strong relapse at the end of May.
Now I’m coming to terms with my new lifestyle, that very much revolves around diet and exercise. Especially diet. With my wife’s help, we are starting the Wahl’s Protocol diet
Does anyone out there have any experience in this?
Hi,
I also have a clinical diagnosis of ataxia but no known cause yet - all tests have been negative so far. I was also a teacher - 17 years full time, then on sick leave and eventually negotiated part-time accommodation for 1 year. I took ill health retirement last May.
I tried the Wahls Protocol 2 years ago and stuck with it for about 5 months. My husband did it with me too - it was hard work!! (Liver for breakfast!!) especially initially giving up carbohydrates and sugar was very hard even though I had a fairly healthy diet beforehand I had previously gone gluten free. Dark chocolate was my saviour ! After a couple of weeks I felt great on the diet, I had more energy and my skin positively glowed. The big problem for me was I was losing weight steadily and it didn't seem to be stopping. I have always been a bit underweight all my life so this wasn't good. I stopped the severest elements of the diet - reintroduced more carbohydrate and dairy (gp worried about osteoporosis) and still had same amount of fruit and veg. A while later I had digestive problems - very bloated tummy, constipation alternating with diarrhoea - colonoscopy didn't reveal anything nasty, thankfully. Gastroenterologist concluded that I was taking in too much fibre - I was taking pregabalin for neuropathic pain and he concluded that this was slowing my digestive system down and causing discomfort, bloating, etc. Have managed to come off pregabalin and slowly reintroducing more fibre - am feeling fairly well these days. For me coming off gluten had a huge effect - my sister is coeliac - I've been tested and I'm not but I think there must be some link. My dizziness improved within a few days, my skin improved immensely - I had dry patches and eczema-like patches which just disappeared, and my energy improved. These days if I have gluten by accident I feel very ill - bloated, diarrhoea, etc. and pain in ears - quite odd so I'm staying off it.
The Wahls protocol is very very hard but I think its worth a try - if you can maintain your weight you could be on to a winner. Best of luck!
Liz
Thanks for your Liz.
Yes - I am getting ready for a bumpy ride with the Wahl’s. Kinda started it yesterday, so just feeling my way round.
Would you mind me asking a few questions?
I feel like it suggests way too much food; do you think you need that much to fully profit from the diet? As long as you stick to the ratios, do you think it’s possible to slim it down a tad?
The Wahl’s Protocol has its own cookbook; do you feel this is a good one? Would you recommend I got this?
There’s no mention of salt/ pepper/ spices; what’s your take here?
Do you do the diet with an exercise routine? I walk and want to combine it with a yoga/ Pilates routine that is designed for Autoimmune problems. I guess you wouldn’t know of one, would you?
I’m sorry to pose so many questions so soon, but there seems no other way
Thanks
James
Hi James,
It's been a while since I read her book but I do remember that it did involve an awful lot of fruit and veg. The 9 cups rule was hard to get my head around and looking at the recipes at the back of the book it seemed like far too much food everyday. I'm not sure if I had the right amounts - found it hard to figure out what the cup measurement was, so as you suggested I kept to the ratios. For breakfast I generally had a smoothie made with kale/spinach/lettuce and fruit and meat/fish and then eggs also. Lunch was usually a big salad again with meat/fish followed by coconut yoghurt and fruit and dinner was usually meat/fish and lots of veg. We have 2 young kids so dinner had to suit us all but obviously the kids got the carbohydrates as well. Things like cauliflower rice, courgette pasta, sweet potato mash and fries worked quite well in staying off carbohydrates. I had to have snacks twice a day also - usually fruit and nuts or nut butter - apple dipped in almond butter - yum! The no sugar rule was hard also - thank God for dark chocolate - I love it and I now find milk chocolate far too sweet. I made my own nut granola, tried to make coconut yoghurt - was never very successful, made date bars, etc. There are countless recipes for paleo alternatives to everything online so I don't think you'd need a cook book and personally I didn't like the sound of her recipes in the book but it's a matter of personal taste. I think I recall reading that salt in moderation, pepper, herbs and spices were fine.
In her book she talks about her exercise routine - daily swimming and other exercises, I think that the exercise is an important element of her approach. I have attended physiotherapy in the past and continue with those exercises, I do yoga, swim occasionally and walk. The yoga routine I do is one I came up with myself using a book and having done yoga intermittently over the years - I love it and it really helps with stiffness and tightness - peripheral neuropathy in legs is a big problem for me. I don't know of any routines specifically for autoimmune conditions - the book I have is Yoga for Dummies and I find it great! - you could probably get some inspiration online - I found exercises for Charcot Marie Tooth disease on Youtube - at one stage docs thought that's what I had - peripheral neuropathy main symptom - I think it all helps. With ataxia any exercise that strengthens your core and challenges your balance will help. I've tried Pilates classes but I find the standard class time is too long and I can't manage it - a couple of the physio exercises I was given are based on Pilates.
Have you attended physiotherapy? If not, this might be a good idea as they assess you and tailor an exercise programme for you.
Good luck, it's definitely worth a try, especially when you don't know what's caused your ataxia - Terry Wahls' story is so inspiring! Let me know how you get on and you've inspired me to up the fruit and veg and lower the carbs.
Regards,
Liz
Thanks for this Liz.
In fact, I've found a Youtube video of 'Autoimmune yoga', which I'll try the next couple of days.
As you say, finding out EXACTLY what you need is the hard one. And that comes from a talk with my doctor in Queen Square, London to try to get an exact diagnosis and hopefully be referred to one of the Ataxia Training Clinics. From there, hopefully I can get targeted exercises.
I guess you're in the States; here in UK the NHS is being cripplingly under-funded!
Anyway, Thanks again
James
Hi James,
No, I'm in Ireland and believe me we also know all about underfunding!! The NHS was always held up as a model to work towards, hopefully it will get back to where it was. We have one ataxia clinic here luckily in Dublin where I live so I don't have too far to travel. I've attended twice, get an annual appointment. I previously attended a neurologist and physiotherapist privately. Just be mindful, that an exact diagnosis may not happen - I'm hopeful that I'll get one but I've made my peace with the fact that I may not. Last visit to the ataxia clinic here the neurologist put it to me that there were no further tests to be done and that if in the future somebody in my family develops ataxia they could do further genetic tests. I was not happy!!! Just try to keep well - good food, exercise, plenty of sleep and try to keep your mind active and off ataxia - I went back to study languages with OU part-time this year and really enjoyed it.
Keep well,
Liz
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