Posted by: PD Warrior | September 17, 2007

Knowledge is power

A week ago Kate from “Shake Rattle and Roll” came up with a brilliant idea. In an effort to increase public awareness about PD and hopefully help/inspire others who have been affected by the disease, she suggested that the two of us do an interview exchange, and publish each other’s answers on our respective sites. We each came up with questions about Parkinson’s Disease and the effect it may or may not have had on our lives and submitted them to each other.

For me, the project has been a wonderful experience, one which I have been blessed to be a part of. So, without further ado, here are Kate’s answers to my questions.

Joe: Parkinson’s Disease, like everything else in life, has varying effects on people. Most people automatically think of tremors when they think of Parkinson’s, but the “PD Shake” as I like to call it, is not the only symptom of the disease. In fact, some people with PD don’t actually show any signs of tremor until they are in very advanced stages of the disease. What was the first noticeable symptom of Parkinson’s Disease that you experienced, the one that prompted you to seek medical attention to find out what was going on?

Kate: Before my Parkinson’s diagnosis in May 1996, I was a member of a local Toastmasters group. Toastmasters International is an organization that provides a program in oral communication and leadership training. The feedback on speeches was always the same: “You didn’t seem nervous except for the tremor in your left hand.” I dismissed the comment, believing that the tremor was caused by public speaking anxiety. Another member’s feedback was: “Your left arm and hand just seemed to hang there and served no useful purpose,” while another participant commented, “You didn’t seem to show any facial expression.” Their feedback prompted me to seek medical help. From then on, I affectionately referred to this group as the Toastmasters Doctors.

Joe: What went through your mind when you first received the diagnosis of Parkinson’s disease?

Kate: I will always remember May 8, 1996, the day I was diagnosed with PD. My left arm hung there like a dead animal. I dropped things. People told me I had a blank facial expression. My voice was soft and raspy. Typing on the computer slowed and became punctuated with errors. A typed word such as “home” appeared as “homeeeeeeee” on the computer screen. My fingers grew minds of their own.

“I have good news and bad news,” the neurologist said. “The good news is that you don’t have a brain tumor, Lou Gehrig’s disease or Wilson’s disease. The bad news is that it appears that you have Parkinson’s Disease.”

Somehow I missed the part about the good news. I didn’t want to have anything to do with any of those dreadful diseases. Too afraid to ask out loud, I silently questioned:

Will I end up in a wheelchair?

Will I be able to work until retirement?

What about playing in the accordion competition?

Why me, God?

Joe: When someone has Parkinson’s Disease they aren’t the only one it affects. The disease has both emotional and physical ramifications for loved ones/family members and any other type of care givers. How has this disease affected your family, both physically and emotionally?

Kate: My immediate family consists of my husband, Tom. After 33 years of marriage, I know that it’s best for Tom to speak for himself.

Tom: PD is a disease of function. We have been very fortunate that Kate’s symptoms have been minimal compared to others. When Kate cannot function, such as when her meds are not working and her energy or voice is low, it can be frustrating. Even walking the dog or staying up late is out of the question! PD has taught me how to be more patient and go with the flow. It has also taught me the value of exercise, good health and not taking everyday function for granted. You always need a Plan B!

My biggest fear is that someday Kate’s functioning will deteriorate to the point that she will be in a wheelchair and in need of more extensive care. I have resigned myself to deal with that reality when I come to it. In the meantime, damn the PD and full speed ahead!

Joe: The disease can be devastating, but again, like everything else in life, it can also have a positive impact on a person’s life. Name one positive outcome this disease has had on either you or a loved one.

Kate: Although I’ll probably never reach the point where I’ll feel “lucky” to have PD (as Michael J. Fox did in his book, “Lucky Man”), I’ve become a better person because of having it.

I am more appreciative of each day and don’t take life for granted. My new mantra is “Plan for tomorrow AND live for today.” I am less fearful, no longer afraid of trying new things.

I am more generous in helping others by writing my blog, co-founding a local Deep Brain Stimulation (DBS) Surgery Support Group, and soon I will be volunteering at the hospital, meeting with DBS patients and their families. I am more empathetic and patient with myself and others with disabilities.

Joe: If you had one word of advice for anyone affected by this disease, what would it be?

Kate: My advice to others living with PD would be: stop concealing and start revealing.

My biggest regret along my PD path was not sharing with others about my struggles with PD. I knew that if I didn’t share about PD, others such as my husband those who knew about my PD, would bail me out by speaking for me. I never knew who knew about my secret, and what they knew.

I was ashamed about having PD as though it was my fault that I had this malady. I was living a lie. I insulted people by not sharing my life with PD with them. I deprived people of the opportunity to provide support.

In April 2005 after having PD for nine years, I decided it was time to stop concealing and start revealing. I sent an email disclosing my PD to more than 300 friends, family, work associates and hospital volunteers. I ended my “coming out” story with: “Having Parkinson’s is no longer a taboo subject for me. Please feel free to bring up the topic and ask questions. I may provide more information than you ever wanted to know.”

 

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Responses

  1. Joe (and Kate & Tom),
    This is a wonderful post about what you face. It’s support for those facing PD and education for those like me who aren’t personally dealing with the disease. Kate’s mantra and attitude is what all of us touched by some disease eventually find ourselves adopting; at least I did.

    I think we hesitate to be honest when we are facing disease. I just removed a mention of breast cancer in a blog post. I’m looking for a job and thought, you know I probably don’t need to be SO honest. It’s there but buried a bit. So I can understand Kate’s reluctance to announce to the world what was going on.

    Thank you both and now I’ll check out Kate’s blog.

    Like

  2. Well, Joe, I went over to Kate’s blog and she can write too. I enjoyed hearing more about Joe and especially how PD has impacted your work. I can only imagine that if you were dealing with patients with PD and then was diagnosed yourself that you certainly would have mixed feelings. Now, though, you can offer patients and families an understanding quite unlike any others.

    Here’s what I said to Kate:
    I just came from Joe’s place and wanted to tell you that I think you and Tom did a good job of talking about PD. I’m not personally touched by PD but have dealt with breast cancer for the last three and half years. Not the same but what struck me was the attitude you decided to have.

    I don’t know what books and resources are out there for families facing PD, but in my opinion you and Joe could write a wonderful and personal tale of the PD journey.

    I read your profile and noticed that you have an English Springer Spaniel. We had one of these terrific dogs for 13 years and I miss her dearly. At some point I hope to find another. I wish you the best as you handle your life with PD.

    Joe,
    I’m sincere in what I say about a book. You are both great writers and have a story to tell.

    Like

  3. Thank you so much for being so candid, I have very little personal experience with PK and found your openness to be very helpful in understanding a little more about this disease.

    Like

  4. Sheila, thank you very much for your support and encouragement. It means a lot.

    Like

  5. Wow, this is a great interview, Joe! Thank you for the link to Kate’s blog, I will check it out after I post this comment.

    I have a friend who, on Tuesday, underwent Deep Brain Stimulus Surgery. I will send him the link to the DBS support site. My friend, as he did when he climbed mountains way back when with Graham, has the most positive outlook of any one I know. With advanced PD, he still climbs, still hikes…and when he begins to shake on his solitary hikes and someone comes upon him, he tells them he’s doing a Rain Dance.

    I’m with Sheila…I think the two of you should definitely consider writing this all down. I believe it would do very well.

    Like

  6. Thanks, Marion, for your kind words about my blog.

    After creating my blog about a year ago and nearly120 posts later, I sometimes feel that I have nothing more to say about living with PD. And then I receive an email from someone who is inspired by my writing or that I have increased awareness and understanding about PD. That’s all I need to motivate me to continue writing.

    I appreciate your support.

    Kate Kelsall
    Shake, Rattle and Roll
    http://katekelsall.typepad.com/my_weblog/

    Like


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