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Topic I like this: hope you do too Go to previous topic Go to next topic Go to higher level

By mylove On 2009.11.03 10:49
This post is from Peter Dunlap-Shohl. You may have already visited his blog at Off and On: The Alaska Parkinson's Rag (and if you haven't, it's very much worth a bookmark!).

This was his most recent post. Even if you're in a spot where you feel like hope is too far away, or you're just someone who hates optimists, it's worth a read.


Paths to meaning, salvaging quality of life with PD

Parkinson's Disease is no walk in the park. Unless your park is home to a mysterious debilitating assailant who steals up to you and attempts to slowly rob you of your life.

Diagnosis is devastating to the person getting the verdict. The words "Disease" "progressive" and "incurable" are toxic enough when used together to render the gentlest, most well-meaning words of comfort hollow-sounding. Following my diagnosis, I appreciated words of comfort and predictions of spiritual growth as well-meaning administrations of an emotional placebo. A sugar pill offered to fend off painful reality.

The pain of Parkinson's is real. There is physical pain and fatigue that arise from involuntary muscle contraction and stiffness. There is the embarrassment of loss of control of your body. Tremor and drooling are not the skills one cultivates to become one of the glitterati. Slurring of speech, falling and sexual dysfunction? Those amount to many of the downsides of being drunk with none of the upsides. At least drunkenness wears off after a time.

There is financial pain. The meds are not cheap. And if you're lucky enough to have decent insurance where you work, guess what. Parkinson's is likely to take your job, too. The tentative financial security that most of us live with, or are trying to establish goes *poof* with Parkinson's.

It makes a person want to scream. Oh, sorry, more bad news, your voice also goes. Tell you what. Instead of screaming, just whisper loudly. What's that you say? Come again? Oh. Whispering isn't a satisfying substitute for screaming? Not for me either. The line forms here for a literal life of quiet desperation.

I could go on, but the picture should be clear. What we have here is a one-way ticket to the sewer. The sad fact is that this is so clear that a recent study found a person with Parkinson's Disease is five times more likely to commit suicide than a person without. Unsurprising. I considered killing myself when I first found out that I was heir to all that Parkinson's had to offer.

It would have been a monumental mistake. If you're a little lucky, if you're willing and able to junk what you can no longer carry, if you're willing to take new paths to meaning, you'll be surprised at what you can salvage of life. And at what you might find that you were unable to see before.

How does one live with, much less claim acceptable quality of life in the face of the Parkinson's parade of horribles? From my experience, I found a long list of things. Here are some that are critical. This list should be read with the understanding that it is only made possible by all that others have done to advance the treatment of PD, and the hope of future advances.

First, there are worse things than simple PD. Parkinson's is slow, and furthermore with modern medications and surgery the worst effects can be held at bay for an indefinite time, certainly a long one. There are forms of "Atypical Parkinsonism" more pitiless than normal Parkinsons that do not respond to present medications and bring on helplessness and dementia with a ferocity that is as frightening as it is senseless. (to see the blog of one man's courageous journey into this dark territory, look here)

We've all lost friends and loved ones to quicker killers like cancer. In the years since I've been diagnosed I've seen the sun rise over 2000 times. I've watched my son grow into promising manhood. I've shared love, music and travel with my wife. This is certainly better than not having this span of time. Yes Parkinson's will take it all from you, but there is a certain satisfaction in making the bastard work for it.

Second, if you're depressed (and if you're thinking of killing yourself, you are depressed) get help. You're not alone. Nearly half of people with PD are suffering depression. This is an area in which pride can become a stumbling block.It's hard to admit that you are not in charge of your emotions. Cut yourself some slack, you've got Parkinson's Disease. Depression is part of the beast. You want to resist the beast. The pills certainly help me.

Third, exercise. This is worth a whole post in itself. I've even written such a post, several in fact, here, here, and here, for example.

Fourth, Don't stop doing things you enjoy. I still ride my bike, not as aggressively as I used to, but still with enjoyment. I still make music and draw, in some ways better and in other ways worse than I used to. I still bake, read, enjoy movies. No reason you can't too.

Fifth, get involved with your support group. Life needs meaning, especially when it feels damaged. You are uniquely qualified to benefit others who share your plight. You are a Parkinson's Disease expert. In helping others you will help yourself. I have tested this theory and am surprised at how well it works. You'll get tired and exasperated too, but these are signs of life.

Sixth, take care of your care partner if you have one. They deserve it. And more important, they need it. Gestures of affection and help around the house may seem like small things, but anyone who knows even a little of what you are going through will appreciate that you are working on a different scale.

Seventh, cultivate hope. Ask anybody who has been around this disease and they'll tell you that the last twenty years have seen a tremendous rise in the understanding and care of those with Parkinson's. We're in a position now to see the day when Parkinson's, if not cured, can at least be treated as something to manange, instead of something merely to be endured. And a cure remains a tantalizing possibility that will become reality someday.

Eighth: Keep your sense of humor. This is what it's for. There's nothing funny about someone with no problems, unless you mean "funny strange". But Parkinson's? That's a hoot! The slapstick alone around my house is at least Three Stooges quality, and did I ever tell you about Pam's idea for the Parkinson's Bobble-Head Doll?

That's my list. It works for me at least. Does it amount to nothing more than a complex version of the Placebo Effect? It might. But a placebo that lasts this long this effectively is better than most medicines.

By annwood On 2009.11.03 11:03
Thank you for posting this. I hope that it is able to help many here on the board.

By bandido1 On 2009.11.03 13:01
Mylove: Many thanks for this post. I am going to try to get permission to include it in a book ten of our Neurotalk patients forum are writing in a joint collaboration.
The book is still in the info gathering stage and we have a chapter on Quality of Life.

By mylove On 2009.11.03 13:43
Bob - I thought of you and your words of wisdom when I read this!

By LOHENGR1N On 2009.11.03 14:40
mylove, thanks for the posting. It's cloudy day (physically cloudy) here today. You know the dreary cold kind. The post reminded me that the sun still shines above the cloud layer. thanks again, good post, great attitude! Take care, best of luck and hang in there.

By Pick On 2009.11.03 21:03
I don't understand your need to write kinda aggressive and hurtful things like "if you're just someone who hates optomists" (I don't think anyone would be here if they hated optomists....and I don't feel anyone here is "just" anybody. I feel compelled to stick up for whomever you're referring to)....nevertheless, I enjoyed reading Mr. Dunlap-Shohl's words...especially those that pertain to finding meaning. I'm a big fan of Viktor Frankl's "Man's Search for Meaning". I know people who claim this book saved their life. If you've never read it I highly recommend it to all dealing with what seems to be insurmountable, meaningless suffering.

I think this a good time to repost this link to a parkie who I believe embodies many of the qualities espoused by Dunlap-Shohl. (bandido once said it should be required viewing for all parkies :P). In my opinion, this man is an inspiration to parkies and non-parkies alike and I feel very privileged to have met him: (warning: I can't watch the rowing competition without bursting into out! :D)

Hope you enjoy it! Much love and hugs. Pick

By mylove On 2009.11.03 22:30
Ha! Just a little jibe at myself, since I'm one of those 'annoying optimists' and I know I drive you all crazy... LOL

One more thing: if you go to Peter's profile page, he's also following some other good blogs. One of these is a PhD student doing research on PD and music. It's also very interesting reading, if you aren't afraid to wade through some esoteric, research-oriented material. I will say it's written as a technical paper, so it does read difficult, but the info is very interesting. Here's the link to that one, in case anyone wants to check it out too.

By mylove On 2009.11.04 08:59
Huh! And just like that, this was on the listserv this morning:

By karolinakitty On 2009.11.04 20:08
Awesome !!! thanx mylove .... i know the three stooges part..well 2 in our case...humor IS the best medicine.....but then music is a very close second.....
As a musician myself, and my man has a deep love for it, it helps him get through very well.
We probably have the most unusual collection of music around from classical to rock to jazz, celtic, latino, contemporary christian and the list goes on. Music calms the heart, soul and mind. It seems that it helps the tremors too. My man will try and work on his fishing reels, doing delicate work and the music helps to keep the tremors in check so he can keep working on them, plus keeps his mind "moving" so to speak.

By Trish Sanchez On 2009.12.20 11:01
Thank you, this messsage has helped me tremendously......

I was awake most of last night trying to make decisions on Mom's care. She has been very angry and judgemental this week. Sometimes the hurt of her words is harder than dealing with her disease.

By Pearly4 On 2009.12.20 11:43
Trish- just a word. My mom was the same way. We had a horrible 5 years while she lived with my husband and I but lost her last June. I tried to tell myself then, but find it much easier to see now, it was not my mother I was caring for, but her diseases. It's a hard thing to get through -- I'll be thinking of you in the weeks/months/years ahead.

By Trish Sanchez On 2009.12.28 23:24
Thank you for this, the past couple of days I have actually told Mom exactly what you are telling me; It is the disease, we can't control it.

God Bless, I know how much you must miss her.....

Please remember Mom and I in your thoughts and prayers, you truly have an insight few others can offer......

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