The incredible easing of my Parkinson’s Disease (PD) symptoms through diet change

The short version

I have Parkinson’s Disease and in 2023 found myself in a desperate state. I then cut junk, dairy, eggs and sugar from my diet. The improvement in my symptoms was as quick as it was significant, so it is fair to assume my PD and/or meds are very sensitive to certain foods. I am slowly reintroducing foods that don’t make me feel rotten or leave me in pain. My base diet is quite tasty and easy to work with, but reintroducing foods is hard work because when a food and my body don’t get on it can take two or three days for me to get over the resultant pain. I still take PD meds. This information will not help everyone but I am posting it in case it helps just one person ease their symptoms.

My flavour of PD

I was diagnosed with PD in 2018. PD has a long menu of symptoms, any of which you may get to a varying degree or not at all. My PD makes me stiff rather than shaky, and is worse on my left side.

My PD started with a feeling that I couldn’t straighten my left arm. Then I had a pain in my shoulder that would not budge. When I started dragging my left leg it was obvious what was wrong.

I have dribbled/drooled. Shuffled like a 100 year old some days, like a 80 year old others. I have had a ‘fall’. Frozen. Been unable to use my left hand. Suffered leg cramps. Had my feet bent double. Unable to turn over in bed. My speech was almost unintelligible at times, and I often spoke with a stammer. Suffered from anxiety. All the usual. The severity of my symptoms would ebb and flow but I was always obviously ill. I stopped drooling altogether but have no idea why. Some days I could use my left hand to type, others not. Etc. This was the norm until December 2022.

Things I have tried that had little if any affect

Multiple types of B1, mucuna, magnesium, etc. They may work for some but they didn’t for me. I did not take up the legendary fast walking, partly because I played football twice a week until December 2022, which I suspect was at least as good if not better than fast walking, and partly because after getting covid in December 2022 walking itself became difficult.

Start of the downward spiral

In December 2022 I got covid and it wiped me out. Crucially, in hindsight, getting covid stopped me cooking my own meals and so I turned to heating up frozen food, making cheese toasties, cheese and onion omelettes, etc. I aimed for filling foods as I didn’t want to lose weight. I would treat myself to a latte every day on my way to work. I ate a lot of cheese and eggs. I wasn’t getting any better — I was deteriorating fast, and I was frightened. To add to my already poor condition I got an infection that took a while to shift.

How bad my symptoms became

By mid 2023 I was unable to lift a baby cup to my lips to take a drink. I was so frustrated by my stammer I had stopped talking. The NHS (inc a brilliant PD nurse) had done all they could to help and my future was all about mobility aids, adapting my house for my disability, and the words ‘care home’ even got a mention. I handed back my driving license, gave my children powers of attorney over me, and my focus was on clearing the decks for a clean exit when the time came.

The non-medical term for my condition was ‘totally (second word is all capitals and begins with ‘F’)’.

How good are things now

When I stick to foods PD likes I am way better than I have been for years. Early mornings are not always amazing as it takes time to build up the meds in my system, but once they have kicked in I am ok.

When I introduce a food my PD is not so fond of it is a painful and tiring couple of days but because of my overall diet it isn’t half as bad as it used to be. It is manageable as opposed to crucifying.

Last Thursday, for instance, I had an evening out in Manchester and the day after I travelled 120 miles to watch my football team. I can even — and PWP will know the struggle is real — I can even turn over in bed. Those things are big news for me.

I am aware that we PWP can get overexcited by glimmers of progress and extrapolate them into something they are not, so I have taken my time to be reasonably confident about the change in me, and ask others for their honest view of me. At the football match I spent time with someone for the first time in at least twelve months if not longer. Today I asked him to give me an honest opinion on how I appeared.

“I was very positively shocked on Friday. I actually can’t believe the transformation [edited out nice things].

The last time I saw you during the ‘bad time’ for want of a better phrase [when he had seen me I would still have been far from my worst] you could hardly speak and looked physically weak. You were shuffling rather than walking and clearly not in a good place.

Jump forward appropriately to ‘Good Friday’ and you would never have known you had PD.

You were physically very upright and looked strong and conversing with you was the pleasure it always was.

Having said all that, how you eat that vegan sh!t is beyond me 😂😂”

Here is what made the difference

I have done no exercise since December 2022, so this is solely about clearing the decks of foods that, together, made me dreadfully ill, and the difference finding and removing them has made. It is yours to take from as you wish.

1. I upped the dosage of my meds by 50%. (I take them at 7am, 10am, 1pm, 4pm and 7pm. I also take a couple overnight but they never seem to do much.) The increased dosage contributed 10–15% of my overall improvement. Enough to give me some energy back.

a. I always drink a mug of freshly boiled water before taking my meds to clear away throat gunk as they can get stuck.

b. I don’t eat an hour either side of my meds, especially before. A biscuit might find its way in afterwards from time to time.

c. I must stick rigidly to medication times.

2. The other 85–90% improvement stems from diet. I had previously mentioned diet to my neurologist. He gave a sympathy smile and silence in return. I won’t be seeing him again.

I wish someone had forced me to cut my diet back to the basics and then build it back up from there a long time ago, but then I would not have witnessed such a transformation and not realised the extent to which diet can affect my PD.

a. Never eat too much.

b. (I had already) cut out meat.

c. Cut out dairy.

d. Cut out eggs.

e. Cut out processed food.

f. Massively reduced my protein intake. (My body will tell me if I need any more.)

g. Do not eat 1 hour before or after my meds.

h. Take vitamin B12.

i. Drink only water.

j. Cut down on gluten.

The moment I knew I was onto something

I did all that and within two weeks I was standing up. It was possibly quicker than that, maybe even as quick as four days, but that time was a bit of a jumble.

At that point I put the improvement down to the increase in meds and the umpteenth supplement I had started taking at the same time. I ruled out diet because people would be screaming it from the rooftops. (Maybe they are but I wasn’t listening.)

So as a little test I made myself a cheese toastie. I love cheese. 15 minutes later I could barely move — the pain and cramps lasted for two days. That was the end of me and cheese.

By four weeks I was getting giddy with excitement. I was walking normally and my speech was varying between 85–100%. I recently had cause to listen to a Teams call I had recorded in March 2023. I sounded awful. Dreadful. I have a lot of respect for my employer and colleagues for being so nice to me at the time.

What foods can I eat? (You could use parts of this to arrive at your own baseline)

Although our reactions to food will be as unpredictable as our symptoms the following work for me and seem fairly safe to my untrained eye.

I am no great cook — I don’t have the patience or skill. Most things I cook I tend to batch cook. I eat what feels right at the time. For instance, my favourite breakfast is roasted cauliflower which I mix with different spices, and mashed potato to which I add coconut yogurt for mashing.

• Veg soups — quick, easy and tasty.

• Curried veg (cauliflower, broccoli usually) or flavoured with spices like smoked paprika, garlic powder, onion powder, curry powder topped with mashed potato. I crave this for breakfast. (I know.)

• Tray of cubed vegetables mixed with olive oil and spices and roasted.

• Garlic.

• Normal and sweet potatoes.

• Boiled baby potatoes, smashed onto a baking tray, covered with olive oil and lazy garlic, crisped in the oven then sprinkled with salt at the end are moorish.

• Smashed avocados with diced red onion, tomato, salt & pepper.

• Posh pepper crackers from Aldi.

• Coconut yoghurt.

• Frozen fruits of the forest.

• Bananas.

• Sultanas.

• Dates.

• Walnuts.

• Garlic mushrooms — small portions only.

• Home-made red lentil soup — small portions only.

• Home-made red lentil curries — small portions only.

• Salad, beetroot — that kind of stuff.

• Crisps and chips don’t affect me. I can get away with a crisp or chip butty with sauce (brown for the crisps, tomato for the chips) with only a minimal reaction to enjoyment ratio, and that is due to the white bread.

• I make protein balls out of walnuts, oats, date paste, salt and olive oil.

• PUR chewing gum, without aspartame.

• (Added 2-Apr-24) Various beans — butter beans, kidney beans, etc.

What is ‘the pain’ I mention

When I eat something my body isn’t happy with it feels like hot concrete is being poured into the veins in my legs. The pain is not always severe but it can give me leg cramps which means I will struggle sleeping, and tiredness is bad for PD, which makes me anxious, and so on. It can take two days to recover from an incompatible food choice. I add a day on just to rest my body before I try any other food.

Foods that affect me but where the pain is tolerable

• A vegetable biryani from the local takeaway (minus the little omelette)

• Rolled oats soaked overnight in oat milk with frozen fruits of the forest — I love oats but am still undecided whether the feeling is mutual.

• I don’t eat much pasta or rice but I think rice is probably fine but I am not 100% about pasta.

· Linda McCartney’s Country Pies do not affect me that badly.

• White bread, but no more than a slice a day, and even that is questionable.

What doesn’t work

• Dairy.

• Eggs.

• Many of the pretend meats.

• I stopped eating meat a few years ago — it was one or all of tasteless, sad looking, of questionable quality, or it upset my stomach. You eat it by all means, but it is not for me.

• Sugary stuff.

• Peanut butter.

• Cooked tomatoes (but not uncooked).

• Home-made flatbread.

• Many processed foods.

I am not great all of the time

I am a man so in addition to cramps etc from understandable failures when reintroducing foods I sometimes think I am all conquering and that two slices of jam on toast at 3:30am will do no harm or, as on Saturday evening, that a vegan pizza from the takeaway presented no danger, which was clearly nonsense as the leg cramps overnight set up a tired and uncomfortable Sunday. But even then symptoms are nowhere near as bad as when I had dairy and eggs in my diet.

Other things that make a difference to how I feel

· If I have a cold my PD suffers more.

· If I don’t sleep well (often because I have tried some food that doesn’t like me) I am not at my best the day after.

· I feel better for moving around a bit during the day.

· I think I should now be doing walking (maybe even fast), exercises, and light weights.

· Stress, but I find Wim Hoff’s deep breathing technique helps.

Would a ZOE work?

It analyses your gut microbiome but without understanding how changes in your gut microbiome affect your PD symptoms I do not see how it can. On the other hand their results may correlate with PD symptoms straight out of the box. I don’t know.

That is it

I might post recipes and if things change, especially as I begin to exercise, I will post updates. Meanwhile the difference because of my change in diet — especially dairy — is crazy. I wonder how many people across so many illnesses would benefit from this kind of activity. My approach is admittedly amateur, but then again a NHS nutritionist friend scoffed at my plant based diet. Hmmm.