I´ve chosen this title as I am going to give you a look at my life as it is, as it was when diagnosed and how I am moving forward as many people have been asking about my regime. I will keep to the facts . I am 74 this Nov and have tremor dominant PD. About 6 yr ago my GP suggested I get checked by a Neuro, I had a tremor in my right thumb, I had lost my smell about 3 yrs before and suffered from dry eyes. A battery of tests , MRI and so on confirmed PD. I was on my own in a strange hospital car park sitting in my car with 2 prescriptions in my hand, not knowing what was happening and crying my eyes out (very dramatic). With no idea of what was going on, ignorant about PD. It was straight back home and onto Google to find out how long I had to live. I suppose by nature I am an inquisitive person and will take things apart to see how they work; it was second nature to get as much info as possible but I had no idea the enormity of the task I was taking on. Got my prescriptions and it was not long before I became lethargic and moody with weird energy levels on and off, jumping the story a bit, I worked out I was taking medication to treat a load of symptoms I didn't have and that as far as I could research would do nothing to stop the PD progression and just made me feel like shit. Pills went in the bin.
Dive in.
Got on groups, forums, FB pages, medical sites, YouTube, anything related to my disease, it consumed me and I was willing to soak up all the info I could find. It is hard to remember but I think the first move was my diet change, a lot of what I was reading was telling me the latest research saying this might all have started in the gut. On to a Keto diet, next thing jumping out at me was exorcise, 3 games a week of golf, walking, not in a buggy. Supplements to control inflammation of the brain, high dose B1, NAC, NADH, and dozens more, Amazon were doing well from me, I was taking about 12 pills a day or more, you name it, I stuck it in my mouth. 6 months in and I started taking control of the situation which was getting a little out of hand and started dropping some pills as I learnt more about their efficacy. Red light therapy was making noises so bought a bulb from Amazon, rigged up a system to get it shining on my head ( would have bought a helmet and still might, expensive) about 30 mins a day..
Skip 3/4 years.
The tremor was now my right hand, a few cramps which I don't get now, drooling which is very little now, not great sleep but take 10mg melatonin now and constipation from time to time, fixed now with ground flax seed on my breakfast every morning, was 12 kilos lighter and feeling as fit as a butchers dog. I thought I might be onto something and wanted to share so started my FB page and have met with a few people locally to share experiences.
Now today.
Start the day with 500mg B1, 800mg Nac, Macuna pill, B3 pill , Ginkgo pill and a 20mg NADH sublingual. will wait half an hour before or after breakfast to take pills. Breakfast every day, avocado, goat yogurt, blueberries and a sprinkling of ground flax seed, big mug coffee. Lunch if I eat one, sauerkraut (so good for the gut), tin sardines in olive oil or some eggs or whatever, on the keto diet I usually miss lunch as not hungry. Evening 500mg B1 and macuna tab. eat 5/6 o´clock and maybe later a cookie and green tea while watching TV, homemade choc/chip made from almond flour. I have many bottles of other supplement pills left and sometimes take one or two, hate wasting money, will use them up. On the upside after golf I sit at the table and don’t go to the bar, I spill anything I’m given to carry. I walk any chance I get, park at the end of supermarket car parks, never use lifts in buildings and so on.
Bed with 10mg melatonin and very very occasionally a sleeping pill, Mr PD makes sure we don't get a straight 8 hours so i´ve accepted it.
My current status .
I have pronounced tremor in my right hand, sometimes while driving I get small tremor in right leg, I have a tremor in my jaw but chew gum so it goes away and about a year ago I developed a small tremor in my left hand, stable at the moment. I function quite normally, at the moment I live alone. So that is it really, I might up the B1 to see if it helps the tremors and I spend at least 12 hours a week looking and learning and waiting for on going phase 3 trials. I believe that a system as complicated as the brain can find work arounds for blocked or damaged pathways, lets hope that’s true.
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