TOP TIPS FOR SURVIVAL BY TOM ISAACS, CO FOUNDER AND PRESIDENT OF THE CURE PARKINSON’S TRUST
1) Engage with your Parkinsons, understand it, study it. There has been research which shows those people who get involved and who face up proactively to their condition have a far better quality of life than those who dont.
2) Be self aware monitor your own physical symptoms as much as you can.
3) Listen to your body and when it tells you to rest rest. When it tells you to go home go home. I do not practice what I preach.
4) Never sit on the left hand side of someone with a broken left arm on a train when you have bad dyskinesia in your right arm. They dont like it!!
5) Try to see the same person each time you visit your doctor, neurologist or geriatrician. Strike up a rapport with them. Some of them are quite nice.
6) Sleep Sleep is fundamentally important to overall Quality of life. For some people it is impossible to sleep without medication but for me I have found that sleep without the use of medication seems to give the brain a break and makes me better in the mornings.
8) In the bad moments always remember that tomorrow will be better.
9) Exercise, exercise, exercise
10) Having said exercise, there are exceptions to this rule, for instance if you do not want be the subject of ridicule dont under any circumstances enter an egg and spoon race you will lose.
11) Take your pills on time or when you need them and always take them with plenty of water otherwise they dont work.
12) Keep mentally active
13) Communication tell people how you feel and dont keep things bottled up people with Parkinsons are like fizzy drinks, they are best when theyre opened up quickly but leave them too long to fester and they are likely to lose their sparkle.
14) Try to look at things from the point of view of those around you. You are not the only one who is affected by Parkinsons in fact others around you may be affected by your Parkinsons even more than you are
15) Be up-front about your Parkinsons spread awareness. I have become so upfront about having Parkinsons that I have been known to tell people when I am first introduced to them and then those same people tend to call me Parkinson for the rest of the evening because they think its my name. So on second thoughts, dont be that up-front about Parkinsons.
16) Keep properly hydrated and do not drink much alcohol.
17) Avoid eating late and try to eat easily digestible foods. Also avoid too much protein during the day if you are taking l-dopa – have your main protein meal at night.
18) Pay great attention to your diet. You are what you eat. Diet is more important than our medication.
19) Keep your gut in good working order – keeping regular is crucial.
20) Ah yes, an important one this. Dont go to a fine art auction. There is no more dangerous place for PwPs.
21) Take regular massage it does wonders for releasing all that tension and stress.
22) Two more important ones now – Never act weirdly as a joke people will think you are genuinely weird there is no benefit of the doubt in Parkinsons…I am all too often a victim of this particular mistake.
23) If financial hardship strikes you, burglary is not the answer. To be a successful burglar, you need to have stealth with Parkinsons is nigh on impossible.
24) If you are experiencing severe on off fluctuations as I do, it is a good idea to try to compartmentalise your life. Almost make your self into two people so that ones misery does not impact on the others joy of living
25) And finally teamwork dont be afraid to use all the services out there that are available.