In this study patients were treated with a complete set of complementary therapies. Individually the therapies showed no benefit, but when taken together there appears to be a measurable impact. No one should try building a list like this on their own, but it's certainly worth talking to one's doctor about coming up with your own set of ideas. I will add that there is increasing research that shows how influential diet can be in supporting cellular health in individuals with neurological disorders. I will look for some research related to diet and neurological health and post them here when I find them.
Here is a quote from the study outlining one patient's combination of treatments:
"As noted above, and following an extended discussion of the components of the therapeutic program, the patient began on some but not all of the system: (1) she eliminated all simple carbohydrates, leading to a weight loss of 20 pounds; (2) she eliminated gluten and processed food from her diet, and increased vegetables, fruits, and non-farmed fish; (3) in order to reduce stress, she began yoga, and ultimately became a yoga instructor; (4) as a second measure to reduce the stress of her job, she began to meditate for 20 minutes twice per day; (5) she took melatonin 0.5mg po qhs; (6) she increased her sleep from 4-5 hours per night to 7- 8 hours per night; (7) she took methylcobalamin 1mg each day; (8) she took vitamin D3 2000IU each day; (9) she took fish oil 2000mg each day; (10) she took CoQ10 200mg each day; (11) she optimized her oral hygiene using an electric flosser and electric toothbrush; (12) following discussion with her primary care provider, she reinstated HRT (hormone replacement therapy) that had been discontinued following the WHI report in 2002; (13) she fasted for a minimum of 12 hours between dinner and breakfast, and for a minimum of three hours between dinner and bedtime; (14) she exercised for a minimum of 30 minutes, 4-6 days per week. "
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Here's a study which makes a high level review of current research on nutrition and neuroprotection. Again it is for AD and not ataxia in particular, but I think the conclusion should interest ataxic patients none the less:
" Regarding nutritional approaches, a first step could be adopting, the earlier the better, a healthy eating lifestyle, as close as possible to the Mediterranean diet, in order to increase the intake of bioactive compounds and contribute to healthy aging. Considering the multifactorial nature of cognitive impairment in aging, especially in AD, it is evident that a multitarget-based approach is essential to address this complex condition (Bolognesi, 2013). Interestingly, this multitarget approach can be obtained through either pharmacological or nutritional strategies, however the combined use of both approaches in order to obtain a synergistic effect could be even more effective most probably as a preventive AD/cognitive aging strategy and perhaps also as a therapeutic approach."
I totally subscribe to the nutritional approach, partly thanks to the research by Dr M Hadjivassiliou from Sheffield.
In desperation I put my son on gluten free diet over 10 years ago and his deterioration has slowed down. He is now 25 and still able to walk (back then he was falling over a lot even on flat ground). His speech also improved.
Before I discovered research on gluten and neurology, all doctors we saw had nothing to offer except an apology that they couldn't help. I just couldn't sit back and wait for research that wasn't even on the horizon so felt nutrition was the only thing I could do - so glad I did
He lives at home as unable to live independently and also takes vitamins D, E and probiotics, although not every day - when we remember.
He has a faulty DNA repair with progressive ataxia. I was initially too scared to even read about ataxia as drs said there is no way of slowing it down.
Thank goodness for internet as it's now easier to research it all, it has helped me a lot, including moral support on this forum
Did the doctor identify the specific ataxia for you SCA1-17, OPMD, Freidriech's or something unknown? In terms of understanding what may or may not be of worth talking about to a doctor it would help if you knew what type of ataxia it is. Unfortunately, some forms of ataxia remain unnamed and poorly studied.
In my son it has been identified as a result of severely impaired DNA repair. All his cells are unable to repair damage and his neuro cells suffer premature death. That's why any even mildly toxic substance/factor can cause damage both on the outside and on the inside.
I felt the only thing I could do was best possible nutrition.
Please, please believe me when I say I want nothing more than to help in any way possible, but your answer of "impaired DNA repair" is factually incorrect. I am so sorry to be saying this on an internet forum as I can not begin to express the empathy I have and my desire to help, but that doesn't stop me from trying I don't know if you have a report at home or you must wait until your next doctor's meeting, but you might be able to help your son better if you could put a name on the illness he has.
I would be interested to know what makes you dismiss DNA repair.
If you search for DNA repair, ataxia and neurology there are a number of conditions and my son has one of them.
Hi Anna, I apologize. I stand corrected and see that "DNA repair" is in fact a term used, but the research I did makes my interest all that more keen. The two primary neurological disorders that fall under the category of DNA repair are Ataxia Telangectasia and Cockayne Syndrome. AT has been cured in mice, and Cockayne Syndrome is the subject of a human clinical trial. I am on the road right now so have limited time to share information , but again I urge you to research, print, and discuss with your sons doctors the latest on Niagen.
Thank you for teaching me something and again my apologies for not researching "DNA repair" first before dismissing the term. I hope and pray doctors find ways to help your son.
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I don't know if you have a report at home or you must wait until your next doctor's meeting, but you might be able to help your son better if you could put a name on the illness he has.
