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As regular readers will know, I was diagnosed with Parkinson's Disease a few years back and that diagnosis has changed my life significantly.
However, the changes are probably not what you're thinking.
Yes, getting out of bed in the morning is now quite a task -- not because I am tired but because my body simply does not function when I first wake. My muscles are incredibly stiff and it takes a huge amount of effort just to roll over and sit upright.
The walk to the bathroom is more of a shuffle, as my legs simply refuse to obey the directions being issued by my brain.
At this point in the day I probably look like someone who's 100 years old rather than 71.
However...
Once I've had a shower and gotten dressed, things improve quite a bit.
The connection between my brain and my body seems to take several minutes to kick in but things progressively improve as I start my day - something that usually happens between 2am and 3am most mornings.
I have a teaspoon of creatine washed down with a mix of cranberry and lemon juice (no added sugar). The high level of plant phenols in the cranberry are supposed to have a powerful antioxidant effect and the lemon juice is loaded with natural vitamin C. The creatine has been proven in a raft of studies to have significant benefits for muscle and brain performance.
I then spend half an hour at my desk and keyboard, reading and responding to emails, staying up to date with a few forums and generally getting my brain up to speed.
Coffee time!
I love my little $100 espresso machine for many reasons. Partly because I know that coffee in this form is also great for your general health but also because I have discovered that a few optimally placed caffeine hits can really help with reducing the symptoms of Parkinson's as the day progresses.
It's also about this time of the day that I'm most likely to suffer from something called dystonia. This is where muscles involuntarily contract and it is perhaps (now) one of the most annoying aspects of the disease. Quite often, a couple of hours after rising, I end up with "spastic hands" as I call them (likely a hugely politically incorrect term). When this happens the muscles in my hands contract and cause my fingers to curl in at weird angles. Unlike regular cramps, trying to straighten things out doesn't help. They stay all bent and twisted until they stop of their own accord. It can be painful but I'm used to it now so I tend to just do some web-browsing or watch some YouTube videos until it passes.
This dystonia can affect any muscles and sometimes when it affects larger muscles things do get a bit "owchie" but again it is something you learn to live with.
Fortunately, bouts of dystonia tend to only last a few minutes so they're simply an inconvenience at this stage.
Interestingly enough, I'm currently trying a new supplement that appears (although it's early days) to have reduced the frequency and duration of such episodes. This new supplement (beta alanine) seems to have also improved my ability to sleep for more than a couple of hours at a time. I tried this supplement because there is some evidence that it is able to stimulate dopamine production... at least in rats
Breakfast comes about three hours after I wake and it's always exactly the same thing... some bran and greek yogurt with hi-protein milk. Lots of new research indicates that your gut biome is incredibly important in general health and in conditions such as Parkinson's so the yogurt reloads me every day with probiotics and other research shows that the effect of those probiotics is hugely boosted by the presence of fibre -- hence the bran.
The rest of my food for a day consists of a teaspoon of almond nut butter, a small handfull of walnuts, some tasty cheese, an apple, a couple of scoops of protein powder and an afternoon meal of either grilled chicken or eggs (sometimes both).
A couple of hours before bed I do my resistance exercise on three or four nights of the week. This involves picking up heavy things and putting them down again.
Last thing at night I have a garlic capsual and a mini-asprin, washed down with another drink of cranberry, lemon juice and soda water.
Did you notice the one thing missing from my day?
Yeah... no medication.
Right now I should be on increasingly large doses of drugs that boost dopamine levels in my brain. The medication I was prescribed is called Sinemet but I intend to avoid taking this stuff for as long as I possibly can.
When I look back I find it intensely interesting that the medical profession seems to say "take these pills and come back in three months" when it comes to PD. They make it very clear that there is no cure and that it is a disease that progresses over time. You can only expect things to get worse, apparently.
Unfortunately, most PD sufferers accept this advice and do exactly what they're told. I'm not that guy though.
When I was first diagnosed I asked my doctor if exercise would help and he said "no" -- but I figured that if I was going to eventually atrophy into a quivering mess in the corner of the room that I'd like to start from a high point -- and started lifting the weights I bought 25 years ago and stuffed in the back of the wardrobe. This alone has made a hugely positive difference to my own quality of life and interestingly, resistance exercise has, over the past few years since my diagnosis, become highly promoted by the medical profession as a mitigation strategy.
I was first though :-)
Then there are the supplements I'm taking.
I take creatine and beta alanine because I did my research. I've read countless hundreds (probaby thousands) of research papers, studies and meta analysis on various supplements and their effects on the human body. I quickly joined the dots and started taking creatine. A couple of years later and it's now being touted by researchers as being highly beneficial for older people in the battle against cognitive and neurodegenerative decline.
What have I learned from the past few years?
Firstly, don't just rely on the traditional treatements for things like this. No, I'm not suggesting you buy magical amulets or snake-oil tonics from dubious merchants. What I would encourage anyone who's diagnosed with a life-changing condition to do is: RESEARCH.
The many, many hours I've spent trawling through complicated medical studies and learning about how my brain and my body work have paid huge dividends. It seems that I've been several years ahead of the medical profession when it comes to mitigation and treatement strategies for Parkinson's and this has made a huge difference to the progression of my condition.
If I'd simply taken the doctor's advice and started gulping down Sinemet right from the get-go then I believe I'd be a whole lot worse off. I've watched others who have done exactly this and within a few short years they're already suffering from the dyskinesia that is a side-effect of this drug. I've also watch them get frail and old far more quickly than they should have.
I'll be honest and admit that sometimes I have "challenging" days but right now these are still very much in the minority and my good days are great. I'm stronger and fitter than I have ever been in my entire life. My tolerance for pain has risen hugely so I can ignore the cramps and other "discomforts" that are now part of my every-day life to the extent that I can't remember the last time I took paracetamol or any other kind of analgesic.
Although my sleep patterns are still far from normal (but that beta alinine is sure helping) I relish the extra hours of consciousness I get while others are still snoozing their lives away in bed. This allows me to do so much more with the time I have left.
Over the past few years I've been sharing my own experiences and successes with other PD sufferers and although my regimine doesn't work for everyone, it seems to be helping a lot of people who'd previously almost given up on enjoying the rest of their lives. Being able to help others is, at least for me, the biggest reward of this journey.
I fully expect to squeeze another decade or two of my mornings into this column so stay tuned!
Carpe Diem folks!
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