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How did you tell your loved ones that you have PD?
Telling a family member or friend that you have PD is no easy task. How long after your diagnosis did you tell them? Was it casually, dramatically or kind of off handed like”we are going out to dinner tonight, BTW I have PD”?
What kind or response did you get?
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9 Replies
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I have 5 adult children ( and 9.5 grandchildren!) and I wanted them to know and not be afraid to ask questions, each in their own way. We were going to be all together for several days Christmas, but I didn’t want a “big reveal” to be a primary focus, or to blunt our holiday fun. So, about 2 weeks before Christmas, I sent them all an email, part of which was
”<span class=”s1″>Wild, wacky, and wonderful kids,</span>
<p class=”p1″><span class=”s1″>This past fall, I was diagnosed with Parkinson’s Disease. (Think Michael J Fox, but perhaps not so funny!) I don’t have many symptoms now, but of course the future is unpredictable. My physical capabilities may deteriorate significantly and, as it is a neuro-degenerative brain disorder,<span class=”Apple-converted-space”> </span>so may my mental function. I guess that is what concerns me the most, as Parkinson’s patients have a higher chance of dementia. So, I may become not only a physically, but also mentally more interesting/embarrassing mom in the future! </span></p>
<p class=”p1″><span class=”s1″>Right now, and hopefully for years to come, I intend to continue my plans to stay active and practice into my retirement. Our city has a nationally recognized Movement Dosorders program, and I have an appointment to start care there.</span></p>
<p class=”p1″><span class=”s1″>Needless to say, all of this has caused some stress. The idea of losing my independence, as well as my mental capabilities, kind of freaks me out. Yet God has been so gracious. When He says, “Do not be afraid,” He really means it.! To insist on retaining control of even these things when I say I am His is to miss my purpose in glorifying Him. I can truly say with the psalmist : </span></p>
<p class=”p1″><span class=”s1″>”My flesh and my heart may fail, but God is the strength of my heart </span></p>
<p class=”p1″><span class=”s1″><span class=”Apple-converted-space”> </span>and my portion<span class=”Apple-converted-space”> </span>forever.”</span></p>
<p class=”p1″><span class=”s1″>Psalms 73:26</span></p>
<p class=”p1″><span class=”s1″>Our chaos, His peace,</span></p>
<p class=”p1″><span class=”s1″>Mom“</span></p>
What a wonderful response I got! At some point in the following week, each one called and asked a few questions, reassuring me of their support through this journey. At Christmas, there were a few more questions, but nothing major. They could see that Mom was still Mom. As I’ve developed some dyskinesia, I’ve pointed this out so they can see the disease as it progresses. They feel free to talk about it and other future issues in a really supportive and positive way. My advice is to tell your family and close friends early in the game!-
Gail, I don’t think there could have been a better way to tell your family and I think it is a wonderful model for others to reference. Your sense of humor shines through as well as your faith. It is wonderful you have a loving and supportive family to. I believe u r well positioned to battle this disease.
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Gail, I don’t think there could have been a better way to tell your family and I think it is a wonderful model for others to reference. Your sense of humor shines through as well as your faith. It is wonderful you have a loving and supportive family to. I believe u r well positioned to battle this disease.
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Hi Jean!
How do I write and edit a response, then cut and paste it into the forum without all of that gobbledygook gook? Or does our server have dyskinesia as well ? 😉
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gail, i have not figured out why that happens. i think you said it best, it suffers from dyskinesia LOL
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Wow, Gail, thanks for sharing. I’m so impressed with ability to deliver difficult news in such a positive and hopeful way. Your references to your faith really speak to me. God is good and he will always provide for us, even when things are difficult. You sound like an amazing mom and grandma and I’m glad your family has been so supportive of you in return. It’s a testament to your relationship with them for sure. <3 Thanks for sharing your example of how to handle this conversation with loved ones. I think it will give others a lot of hope and guidance.
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I met a woman through eHarmony after we were deemed by some computer or pocket calculator to be compatible. We later met in person and ate food together. She brought me an avocado and a jar of green olives because in one of our emails I had said I liked them. I think I kissed her at the end of the second date, while she was distracted putting her bag into the trunk of the car. Seems as if it wasn’t many more dates until we began to disclose ourselves to each other, including finances, retirement, how many people we had murdered (zero for both of us), and so on. Included in this revelatory exercise was a mention that I had Parkinson’s. (This was in 2010, and my symptoms were relatively minor, though I had already been on medication for at least five years.) I don’t think either one of us had the total picture of the future, but then again, when you promise “for better or for worse, in sickness and in health,” you really have no idea what is in your future, anyway. A little while later, the woman, for better or for worse (see?) thought not only that my PD wasn’t a deal breaker, but that she had been called by the Lord to take care of me. So far she hasn’t complained about her assignment (though she has complained about me here and there.) Now that we are both retired, she gives me constant to-do chores and I manage to do most of them without bringing up the excuse that I suffer from PD.
As my sainted mother used to say, “It’s a great life if you don’t weaken.”
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Robert,
Thank you for sharing that story. I couldn’t help but smile at all of the details. My Dad has Parkinsons (diagnosed in 2013), and my Mom feels much the same as your wife does (I think). I think it’s really wonderful to see how the right partner can impact your life. Do you partake in activities together like dancing?
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My wife and I just celebrated the first anniversary of our diagnosis of PD.
Shortly after the diagnosis, we carefully timed a tri-continental conference call [US, UK, and Australia] that covered 4 of our 5 children. The 5th got a separate phone call. They all know that our faith and marriage are strong, and they responded with thoughts of much love and promises of many prayers.
I just broke down and wept on that call – not because I felt sorry for myself, but because I could be blessed with so much love and support. Since then, we’ve kept in touch, even Zoomed a couple times. We still have only seen pix and videos of our three grandchildren, but we have hope to once travel over the many waters to visit them.
Interesting how each one who has shared on this thread has a faith background to their story. I’ve heard that the two best treatments for PD are exercise and humor. I’d like to suggest a third ahead of those two: faith, exercise, and humor.
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