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Sunday 1 February 2015

"Reality. What a concept!" (Robin Williams)

The road is long with many a winding turn that leads us to who knows where, who knows where.

The Hollies' haunting version of "He Ain't Heavy, He's My Brother" has inspired me. We PwP are on a journey that differs for each of us and we use a pencil when we make our future plans. We belong to a club that reluctantly accepts new members and we use our experiences to help ease their fears. This is my contribution based on what I know.

  • When first diagnosed, don't panic. For most, the attack on our brains, although insistent, is slow. You are not going to end up in a wheel chair next week. It took the disease 30 years to knock out the great Ali. If you are newly diagnosed, I predict a cure will happen before you become "Ali-ated".
  • My diagnosis was the result of a simple test - put your hand on your lap and count backwards by 7's from 100. My hand was doing the cha cha by the time I reached two. Somehow that seemed too simple so I sought a second opinion but that second neurologist confirmed the first neuro's diagnosis. I am glad I got that second opinion. Unless your diagnosis is some how definitive, get that second opinion. Mistakes can be made.
  • If, like me, you don't care if the drugs stop working properly after a few years, you would rather take them now and lead a semi normal existence while you still can, you might insist your doctor medicate you early on. I started on the dopamine agonist, mirapex (max dosage) and amantadine (anti viral which seems to inhibit a tremor) and my symptoms all but disappeared. That was 4 years ago. I added L-dopa to the cocktail last year.
  • One of my symptoms held on even after I flooded my body with drugs. My voice became so soft, nobody could hear me. I took vocal lessons which worked wonders but I failed to do the required daily exercises and gradually my voice began to disappear again. My advice to the newly diagnosed, take voice therapy and keep up your practise sessions. Happily, my voice reappeared when the L-Dopa was added.
  • Don't be afraid to tell people you are a sufferer. You will get different reactions, but nobody will look down on you. I can't imagine why anybody would keep it a secret.
  • Exercise, exercise and then exercise some more. It won't stop PD, but it may slow it down. Read my last entry (January 30th ). It will give you some idea of what to do.
  • Eat properly. My wife keeps me on that path. We have health conscious meals most days. I don't know if it helps slow the progrssion of PD, but it tastes good and the experts advise it.
  • Stay away from natural remedies. The fact is there are none. I have tried several and received nothing but a big bill. The only one that might have had a positive effect was mucuna pruiens but I got no relief from it before I started on the prescription drugs.

Above all else, remain optimistic. Keep in mind that your future, however uncertain, will be built upon your actions today. That is your reality. Live with it.

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