Supplements

[penelope2]

Hi, I have always taken high dose supplements, does it help the ataxia? I don't know!Looked at Patrick Holfords supplements and "Brain Food" sounded interesting. An assortment of different supplements to support Brain and neuron function. They are expensive, come in a blister pack to be taken twice a day. I still take CoQ10, Vit D and a probiotic as well.

Patrick Holford is well known in the world of nutrition and functional medicine. He has written several books. No links folks as this wouldn't be allowed and I have no connection with his company.

However I have ataxia, am on no medication so no interactions, and prepared to try anything that might help me.

If interested then research and do what suits you. I will update if there is a positive response but this might take several weeks.

[PatsyIpswich]

I started using Patrick Holford to supplement in 1970s. Not for ataxia but optimum health. My cerebellar ataxia wasn't triggered till 1990s but it may well have been earlier. X

[carol31271]

I I I haven't read any of his work , had ÌBS cutting out dairy I found helped with symptoms. I take magnesium helps with incontinence at night took 3months before it changed to occasional. I take calcium and vitamin D as I've cut out dairy vitamin D ensures absorption and vitamin B12. Not sure what else to take I'm a bit cautious, also concerned about costs. XX

[penelope2 in reply to carol31271]

Hi yes cost is something that needs to be considered. Who knows what is the right amount to take and bioavailabily and synergy needs to be considered too.Some do not believe that supplements work and I do not have all the answers.

What amount of exercise should we be doing is another question?

I have had over the years just one f2f with a Neuro physio then told there was nothing they could do to help me. You can guess how that made me feel!!

I have been looking after myself the best way I know how and yes some days it is an uphill struggle. But I cling to hope. And hope for me is supplements. The NAF website has a list.

Many many years ago I went to listen to Patrick Holford talk on "Food is better medicine than drugs" it was very impressive and has stuck with me ever since.

Sounds like you are looking after yourself the best way you know how with your vitamins you take, that is what we do, maybe some more than others. What we all really need.is more guidance!

I don't think that is going to happen any day soon though.

Take care.

[Driven1 in reply to carol31271]

Excess Calcium and D will calcify Heart arteries. Need K2 to stop this.

[Tallguy101]

Hi Penelope I've tried countless supplements over the years, vitamin D3 during the pandemic, magnesium, olive oil capsules to name only a few that I can remember. Whilst they may be beneficial in some areas, sad to say but supplements alone can't improve ataxia, if that is your aim then you are wasting your money. The only thing that can improve it very very slightly is exercise, I do about an hour and a half every day. A combination of balance, strength and cardio.

[penelope2 in reply to Tallguy101]

Thanks for replying. We do not know if supplements help us or not. The last neurologist i saw said to take higher doses of CoQ10 to that which I already take???? Perhaps he knows something?? I wish that Ataxia UK would put supplements on their website like NAF.Yes I agree that exercise is really important so is mood and a positive attitude along with hope.

There is a lot of desperation out there and while we are waiting for doctors and scientists to come up with answers then we all have to handle things the best way for us individually. And yes I do exercise too.

Take care and keep up the exercise.

[Tallguy101]

I'm doing it right now.... lol.

[carol31271]

Hi, I thought I'd already sent you an email pressed to send but didn't go, probably user error! So this one is shorter. I have found diet and supplements have helped, more noticeable after a few months . I Exercise most days they recommend 20mins daily for I think 5 days per week, I can't do blocks of Exercise it 's too overwhelming for me, I break it down. Whenever I go to the toilet or other daily things it reminds me to do some exercises I think it adds up to 10/15mìns I must admit some days are better than others! Hope this sends?!!

[penelope2 in reply to carol31271]

Hi Carol yes I agree it can take some weeks or even months for supplements to have a positive effect. It makes sense that if your body needs them then the longer it takes to get levels up. What most people don't realise is that RDA recommended daily amounts relate to a middle aged man in good health. so where does someone with poor health factor in on this thinking?As for exercise I think 'little and often' suits me best too. I am in awe of people with ataxia who can exercise for a long time. But even before ataxia going to the gym was something I didn't do. I would rather be dog walking out in the country, that for me was good for the soul too.

Unfortunately not now.

Take care

[carol31271]

Hi, yes I preferred walking or cycling in the countryside before ataxia too, I could never do the gym. I always preferred the fresh air. I am always unsure of the dosage to take when it comes to supplements. Xx

[penelope2 in reply to carol31271]

Hi and sorry for my late reply.A good multi with high levels of B vitamins.

A probiotic with several strains in.

Omega 3 with EPA and DHA.

Vit D again a high level.

And if you have digestive issues or gluten ataxia then a broad spectrum digestive enzymes.

If cost is not an issue then Biocare or Nutri are both good online only companies that sell to the public.

Try not to buy off the shelf from supermarkets as probably will not be of good quality, you get what you pay for.

Also Patrick Holford sells combinations in strips.

Remember a good diet is also optimum and cannot be replaced by supplements.

You should not take Omega 3 without a multi or antioxidants at the same time.

To narrow it down then a good quality multi by itself is OK.

Don't take just one B vit take a multi Bs unless you have been told to by your doctor.

Generally speaking supplements need taking with water and during or after a meal.

I do take other supplements as well but feel it is best to advice the above on HU.

Hope this is helpful. It is a minefield out there. The good supplement companies have their own nutritionists to give advice.

Also I would advise not to buy from adverts in papers. Its a false economy and they may use fillers.

Good luck.

[carol31271]

A fountain of knowledge, thank you. 🙂