Saturday, October 24, 2009

Things I wish I knew when I was diagnosed,

There are so many things about this disease that I wish I had really, really understood when I was first diagnosed. I mean, I read about these things, but I didn't fully grasp the concepts. Here's a partial list of concepts and advice that I wish I had listened to a little better:

1.) Parkinson's is TRULY different for different people. There really is no point in comparing your symptoms to someone else's because everyone gets their own personal version of the disease.

2.) Symptoms come and symptoms go, but true Parkinson's symptoms are GRADUAL. Anything that changes very quickly (within the course of a few days or a week) is probably NOT Parkinson's progression. If you experience a very sudden increase in Parkinson's symptoms, it usually means that you have some underlying health problem, like an infection or a virus or something, or perhaps some emotional stress. If this lasts more than a few weeks, you might want to discuss the possibility of something other than Parkinson's with your neuro. The mills of Parkinson's grind slowly, but they grind exceedingly small.

3.) Sometimes, you feel awful, but everyone thinks you're fine. We get very, very good at masking symptoms, especially at first. People don't understand what it costs you to look "normal", so try not to get mad when someone says "but you can't have Parkinson's; you look so well!". Take it as a compliment.

4.) It will make your life infinitely easier if you start learning to ask for and accept help now, because you ARE going to need help at some point. However; DON'T ask for trouble. If you feel well enough to go to work, go to work. If you feel well enough to dance, dance. Don't assume that a Parkinson's diagnosis means that you have to behave a certain way. Try to honestly evaluate your capabilities on a constant basis, and don't give up something you love if you don't have to.

5.) Listen to what others say. Often, you are not aware of the "quirks" that others see. One of the things that sent me to the doctor in the first place was the fact that my co-workers had begun to tease me about my "robot walk".

6.) Don't worry; be happy. I know; easier said than done, but try, try, try to keep a positive attitude. Do whatever it takes to keep your rose-colored glasses on. Do something positive: join a support group, participate in fundraising events and/or clinical trials and studies, DONATE YOUR BRAIN. Brain dissection is still the only sure way to diagnose most neurological disorders, and provides an absolutely invaluable source of information to researchers. Healthy brains are needed for comparison, too, so encourage your friends and family to donate their brains as well.

7.) Communicate. Tell others about your condition. When you are not feeling well, let people know. Take advantage of opportunities to educate others about PD.

8.) Most important of all: helping others helps you, too. At least, that's what I have found. Donate blood, become a bone marrow donor, volunteer in your community. Remember that there are lots of people out there who are worse off than you are, and if you can help them, it will empower you and remind you that you still have strength, wisdom and courage to share.


Meg Duggan said...

This is a wonderful blog. May we reprint it with attribution in our newsletter for residents of KS MO and OK?

Meg Duggan
Parkinson Foundation of the Heartland

Marian said...

Thanks so much, Meg! I would be more than happy to have some of my stuff appear in your newsletter. I'll email you.

David Thurston said...

What a well thought out and concisely expressed view on how to cope with this ugly condition. Inspiring. Thank you.

Meg said...

My Mom has Parkinson's and we're still adjusting. It is so impossible for us to know when she's trying and when she's down and discouraged enough to throw in the towel for a day/few days. WE always try to give her the benefit of the doubt but it's difficult to know what it's like for her.

Thank you for continuing to educate me and your other readers about this difficult-to-understand disease and thank you for your great attitude. Keep blogging and keeping your chin up, Dear!

Meg said...

By the way, different Meg, not Meg Duggan--this is Meg Schudel from

Marian said...

Thanks, David, and thanks, Meg. Love your website, Meg, BTW.

About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.