(Almost) Everything I Know I Learned from PD

by Lynda McKenzie

In 2007 I celebrate two anniversaries; my 54th birthday in February and in April, my 20th year after being diagnosed with Parkinson’s Disease. Parkinson’s Disease caught me unsuspecting and unaware. I read scary things in dusty old library medical books and saw the pictures of hunchbacked seniors shuffling along. My neurologist gave me some leaflets on PD and told me to read them. At my next visit he said he would answer my questions.

Questions? I had a million but I also had none. The leaflets told me everything I needed to know, but they also said nothing about what was really important. Everything I read told me that PD is a neurological, progressive disease that leaves a person shaking and shuffling. And then my neurologist told me the good news, that he felt there would be a cure in 10 years. OK, I could live with this for 10 years. No problem. My neurologist also told me that PD is not painful. That I would end up in a wheelchair at best. That I should get my affairs in order and find out whether my medical insurance would cover full disability in the future. It didn’t really click as to wonder why he was concerned about my future if I was only going to have to live with this marauder for the next decade. I decided that I would defy PD. I would not let it hurt me, lose my freedom, or let me be totally dependant on someone else.

However as the tenth anniversary of my diagnosis approached, I realized that someone had not been totally honest with me. I did have pain, I was incapacitated, I had shuffled along with the best. I did lose my independence. I have been stared at and pointed to. However I also learned much. I have learned that to my 5 grandchildren I am just ‘grammy’ and not a PWP (Person with Parkinson’s). I just jiggle a lot, which has soothed more than one baby to sleep. I have learned that people who shy away from me are not friends. . I know that even though I can’t handwrite my stories any more, a computer can. I know that there are certain people in this world who will love me and stay with me no matter what else I am dealing with. I have learned that I can focus on the sunny blue sky or the dark grey clouds. It’s my choice.

After living through two decades of Parkinson’s I have actually learned some things. The following are guidelines I wish someone had shared with me after I heard the words, “You have Parkinson’s”.

1. Do get a second opinion. It is your right. Find a neurologist who specializes in PD, and one who is recommended by someone you respect. Follow their instructions.

2. Talk to people, at the Parkinson’s Society, people with Parkinson’s, support groups for the newly diagnosed.

3. Tell the people you love. Hiding it only wastes valuable energy, A diagnosis of PD is a heavy load to carry by yourself. The manner in which you tell people is the manner in which they will treat you.

4. Ok. Feel sorry for yourself. Get angry. But get over it. You’ve got it and it’s staying.

5. Find out your options regarding drug plans, disability insurance, heath plans, provisions for complimentary therapies like massage and acupuncture.

6. Keep active - use it or lose it.

7. Help bring PD out of the closet. I have asked curious people who know no better than to stare at me, if they are aware of Parkinson’s. Then I explain that that is what makes me move the way I do. A life lesson for both of us.

8. Always have a plan A, B and a plan C.

9. Fund raise. Get involved. Do your part to create awareness and end this disease

Given the opportunity to inform the general public about Parkinson’s Disease I would tell them.

1. PD affects more and more young people. The earlier you are diagnosed, the more effective treatments will be. If you experience any of the symptoms, see your doctor.

2. Donations to research will help find a cure. Think of all the talents and skills that are now wasted as well as the money being spent on health care and surgeries for people with Parkinson’s.

3. A person with Parkinson’s may look healthy and fine, but inside their body battles are constantly being fought. It is like a battle field, with skirmishes between rigidity, random movement and tremors, with messages from head office not reaching the soldiers on the field in time or at all.

4. We may walk slowly, or not react with instant smiles or find our change quickly when purchasing in a store, but that does not mean we are mentally incapacitated. We just don’t act as quickly as you would like.

5. Don’t ‘do’ everything for us. Show us the courtesy of opening a door or holding an elevator for us, but don’t give up solicitous pity. We will do as much as we can for ourselves and ask for help for the rest.

6. Parkinson’s is a disease that can cause depression and reclusiveness. Just because you don’t see a lot of us around, doesn’t mean we don’t exist.

Knowledge, acceptance, acknowledgement, action, attitude, and awareness, These are the words I have learned so far from my teacher, Parkinson’s. I’m sure as I travel this pathway, there will be much more to savour and to learn to live with.

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