In the world of understatement, I think we can all agree that food and drink are huge topics. We do it a lot, enjoy it, spend a lot of money on it, and spend a lot of time trying to change the way we eat and drink because it affects us so much, often through diets. Diet choices matter. It is also an area where the so-called ‘Holy Grail’ exists for PD – the world of supplements, nutrients, diet regimes, potions, and miracle cures. My view, almost five years in, is that it is about careful choices, limited bets, consistency, and a willingness to adapt.
Food, nutrition, and diet are rightly enormous fields of options and discussions regarding treatments for Parkinson’s. When I was diagnosed, I started doing research and found literally hundreds of options presented as ‘proven’ solutions to stopping, preventing, or limiting Parkinson’s. It seems everyone has heard of a potential ‘wonder supplement or wonder drug,’ and it is true that I have spent a fortune on many supplements, nutrients, expensive (usually organic or genetic) options, and potential cures for Parkinson’s.
And why not? The argument is always the same – it can’t hurt, there are promising results, try it, it only costs the equivalent of xxx per day. I have ‘fallen’ for this a number of times without deep research. Sadly, these choices have also had unintended and serious consequences, like a heavy impact on my stomach and constipation.
It is, of course, possible that I am missing out on the one non-evidence-based magic solution, so there is a risk in not hoovering up every ‘always very expensive’ solution available on the market. In my view, it is a world of a few true sharks circling to make a quick buck and a lot of innocent and good people influenced by them.
As a CPA, I am uniquely unqualified in these matters, so I am prone to following the ‘it won’t hurt’ game, but there comes a time when you have to take a step back and, in my opinion, start to make choices.
My Diet Choices and Limited Bets
We all have limited resources – money, energy, and time. There are so many demands on our time and funds – we all have to spend money on medications, therapies (PT, OT, ST, etc.), and exercise/physical activity. There are huge implications for our future financial resources which I have discussed elsewhere. More importantly, my brain (which, by the way, is being ravaged by the disease) and body can only handle so much. Currently, my regimen includes a pump, pills, daily yoga, daily exercise, physio, fascia/massage for rigidity, acupuncture, twice-weekly personal trainers (exercise and boxing), and all of that with a full working day, writing (a choice and hobby, I know), and sleep (although I have almost none of that). We must make choices.
I am choosing to disclose my personal decisions regarding diet because people often only talk in generic terms, and I think people want to know what it actually means. I have seen a dietician who specializes in Parkinson’s (and please see this excellent video by Prof. Bas Bloem), and I have adapted it as I have gone along.
My strange and very annoying diet is currently Mediterranean-based: Fish/Chicken, no Red Meat, Dairy limited to Goat Yogurt only, Whole Wheat grains (preferably spelt sourdough for bread), water/tea/coffee (limited cups of caffeinated drinks), limited alcohol, zero high-chemical foods (like Colas), as little processed food as possible, and a diet low in sugar and salt.
Why no red meat and chocolate, you ask? There are many reasons, but basically, I know myself, and I don’t think I am capable of eating meat in moderation. I also take supplements – Vitamin D, Omega Oil, B12, and Magnesium (I used to take many others).
I believe you can’t open the floodgates to every idea and piece of advice – I have to make bets and concentrate on the things that deliver the most value in this fight. I have chosen to avoid those who offer things off the end of the tested scale, but I may be completely incorrect.
For full disclosure – I have lost almost 100% of my smell and a lot of my taste, so to be honest, all of the above tastes exactly the same. While it hugely limits my enjoyment of life, it probably makes all the above a lot easier.
Consistency
I have considered many times diets like Keto and Fasting and am often persuaded by them. As well as them having little or no evidence-based impact on PD (again, see the video), the truth is I know, hand on heart, that I will never stick to the regime. It is a constant up and down and complex regime I won’t be able to live with consistently and establish a routine when I already have to fit in exercise, yoga, and the various elements mentioned above.
Routine for me is really key – Parkinson’s is a day-in, day-out fight, and it requires true stamina to do all the above. Constant change, in my personal view, is not conducive to that. I need a routine. You may need something else, but as I always say – it is my blog.
Adaptive
Science is changing, and it is important to be prepared to adapt over time. My diet continues to evolve, and yes, at times, I lose resolve and aim my heart, body, and soul at white bread in the form of the challah I am not meant to eat, for example, although I have been good in my general control levels.
One thing I am currently considering is the protein aspect. A lot of the previous diet involved timing choices of when to take medications (Sinemet) versus the protein, which is known to impact its efficacy. Now I am on the Produadopa/Vyalev pump, which changes things, so watch this space…
Diet choices – Conclusion
We have hundreds of decisions to make as PD patients, which have a huge impact on our way of life and that of our family. My diet, as it is, causes additional work, effort, and cost, but it is important to think carefully in the arena of diet. I have worked hard to find a consistent routine, however right or wrong. Feel free to ask me and others what they do, and please don’t sell me too many alternative ideas.
