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This page is intended as a source of advice for someone who is newly diagnosed with Parkinson's. It represents a summary of what I have learned as my life has changed since diagnosis. This page was written in March 2008, six months after diagnosis.
Presently, my primary objective is to feel good about myself, feel good about what I am doing, and to retain hope for the future. The diagnosis has changed the focus of my life; instead of having lots of little worries, I just have a single hefty one. The good thing about this single jumbo worry is I can’t do a great deal about it, so overall I am probably happier, for now, than I was before diagnosis. The actions I have taken and the support I have received have both contributed to my current, relatively relaxed state of mind. The right mental attitude will do much more for you than any help from external sources. (Update July 2010 - this is all so true, a positive attitude is your best friend)
Learning About Parkinson's Disease (Everything at First But Now Very Selective)
I think it is important to learn about PD. It is your illness and you need to take ownership of it. There is a lot of information about PD on the Net. The vast majority of it is irrelevant to you because your PD is unique. My experiences will be different to yours. Remember that.
Although it is fascinating to do so, there is nothing to be gained by reading about what could happen to you twenty years down the line. As sure as eggs are eggs, if you read about a symptom you will experience it the next day. No-one knows how your PD will develop and over the next twenty years the therapies and treatments available for Parkies will change beyond all recognition.
So, after having spent the first three months scaring the crap out of myself, I now restrict myself to learning about the research that is going on, how the mechanics of the disease work and reading the positive stuff on websites like Michael J Fox’s or PDPlan4Life.
A book I read early on was "Parkinson's Disease For Dummies". This is a very good read. Of the many good pieces of advice the one that sticks in my mind from the early days is:
Your imagination about PD and its consequences is far worse than living with it.
I read this statement less than a week after diagnosis and hoped it was true. In my view, it is.
Exercise
Now I have never been an exerciser. Me and exercise have never been great friends. However, I learnt pretty early on that a sense of well being and a healthy-ish lifestyle are the good ways of dealing with this condition. Within an hour of finishing a run or spin class my tremble has really diminished, amazing. I have joined a gym and go three to four times a week. To give myself goals I have signed up for a 10K run in June and will be walking the West Highland Way in September. (Update July 2010 - In 2008 I ran a half marathon, in 2009 I ran ten 10Ks and three half marathons, so far in 2010 I have run seven half marathons and the London marathon. I will run three more halfs and the Chicago marathon this year. Exercise is your best weapon. Any exercise. Excuses not permitted, join the WobblyWilliams.com Running Team)
Physio & Pilates
In a similar vein, I wanted to get myself loosened up and improve my balance. I started with a weekly physiotherapy session and tried Tai Chi, Yoga, Bodybalance and Pilates. Essentially I chose Pilates because there are three classes a week at the gym and they are included in my membership! I try and make it to two of the three classes and try and some stretching exercises everyday. I kept the physio up for sixteen weeks and will probably go every eight weeks or so just to check I’m still going in the right direction.
I Do What I Enjoy
“Do all things in moderation, especially moderation” is a phrase that has always made me smile. Now I only do things I enjoy, have to do or don’t mind doing. If I don’t want to do something and don’t have to do it, I don’t do it. Sounds selfish, and probably is, but my time is precious and I am not going to waste it. That being said, I haven’t gone off the rails or had a mid-life crisis. Yet.
WobblyWilliams.com and The Wobbly Williams Walk
I am always much better when I am doing something about a problem. I have found building the website with my brother, writing the blog and, especially, preparing for the walk have been great activities for me. The money raised will make a difference, maybe not to me, but for the Parkies that will follow. This disease will be beaten, of that there is no doubt.
Drugs
I haven't started the drugs yet. My justification for this is that I want to get an idea of how I am progressing before I start masking the symptoms. The truth is I just don't like drugs! I am lucky that my neurologist is of a similar view. She believes the drugs should be adopted when the symtpoms become "troublesome". So neuros say start ASAP others say delay; there isn't, in my view a definitive answer. I also toyed with the starting co-enzyme Q10, a supplement rumoured to delay the progression of the disease. In the end I decided it was a lot of cash which would be better spent on going to New York! I will definitely benefit from that!
NB I started taking Requip (ropinirole) on 20 May 2008 - eight months after diagnosis. For reasoning see Blog entries from May 08
Things I Have Struggled With
The first is meeting other Parkies. Still terrifies me. I have restricted my contact to meeting Young Onset Parkies, people who really understand what I am going through. I do, however, use the forum, which is useful for support when times are hard.
The second is telling people about the illness. It still troubles me. I would rather people didn’t know but the potential for fundraising by broadcasting my condition is greatly increased. Public awareness of this condition is low, the general public still think this is a disease of the elderly, that isn’t true. As I write this (April 2008) the majority of people who know me have no idea. That will probably change within a month.
The final issue I have struggled with is financial planning for the future. Should I plan for the worst or live my life to the full now? Still working that one out! (Update July 2010 - Opted for the live for now approach. Don't know if this is good advice. Look out for an update with the definitive answer in 2047)
Finally, Relax
With a bit of deep breathing and reciting my MONTY, I can calm myself when the terror grips. Also sends me to sleep, so I have to be careful!
M – My support team is as good as it could be
O – This is an Opportunity to make a difference
N – No-one knows how my PD will develop
T – Therapies and Treatments are being developed all the time
Y – Why worry? It is a complete waste of time!
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