Sharing the news with my ex-colleagues: a preemptive piece of PD propaganda

[Parkinson_Schmarkinson]

AFTER GIVING IT A LOT OF CONSIDERATION I DECIDED TO SEND OUT THIS LETTER BEFORE A REUNION WITH PEOPLE WHO HAVE NO IDEA ABOUT MY DX. WHAT DO YOU THINK? TMI?

BEST WISHES TO YOU, COMRADES...I LNOW IT'S BEEN A WHILE, BUT I AM READING YOUR POSTS AGAIN. I WAS OFF FOR 10 WEEKS TENDING TO MY 87-YEAR-OLD DAD WHO HAS ADVANCED PD. THAT'S ANOTHER POST!

I address myself to my erstwhile middle school colleagues, but this is an open letter to anyone who might have wondered what ever happened to [me]. It’s been four years without any contact between us, but M. wrote me a few days ago to say that the eighth graders have requested my presence at their graduation ceremony, and I was happy to accept.

There is something that I want to tell you before I show up. Something a little…icky, or possibly Too Much Information. Read on at your peril.

During my tenure there I confided to a few of you that I was afflicted with depression and anxiety, insomnia, fatigue, and confusion when presented with novel situations. I also experienced apparently unrelated phenomena such as an unprovoked frozen shoulder, an occasional tremor in my right hand that my doctor ascribed to anxiety, and a sudden change in my handwriting.

After leaving I took a second grade position back in the public school system, a job for which I was far better suited than I was for middle school. Yet, despite a range of therapies I was increasingly beset by distressing episodes. In November 2010 my new general practitioner sent me to a neurologist, who performed a series of tests and diagnosed idiopathic Parkinson’s Disease (PD). A second opinion confirmed this diagnosis, and I learned that my cognitive, emotional, and motor complaints were all typical early signs of PD, which often appear years before diagnosis. I began to take medications and physical therapy and I soon retired from the teaching profession.

PD is a degenerative neurological condition and there is no cure. There are, however, many effective treatments, and once I started my drug and movement therapies I felt MUCH better, happier in fact than I had felt in years. I also developed better mental habits, notably an “attitude of gratitude” that helps me stay positive and in the moment. The disease does not interfere much with my daily life at this point and I don’t fret about tomorrow. I don’t feel sorry for myself either. Everybody gets something eventually. I am O.K. Really.

So why, you may ask yourself, am I even sharing all this rather personal and possibly irrelevant information?

First, I just want it known that if you saw me stumble and fumble through my workday and asked yourself “Is something wrong with this guy?”, well, yes, good call, there was something wrong with me beyond the jumble of contradictory traits we all drag along with us through life.

Second, if you see me shake on Friday, it’s not impatience or nervousness; it’s just the Parkinson’s. If you see me stagger or shuffle or walk with excessive care, I’m not drunk at 1:00 in the afternoon; it’s the PD. Ditto if I schlump around hunched over, garble my speech, or struggle with my food. Being in public exacerbates these symptoms, but they are trivial to me.

Finally, I write as a member of the PD community, in a humble effort to raise awareness about this ridiculous and misunderstood condition called Parkinson’s. It’s not just old guys shaking. Early onset is common, and some Parkinson’s people never get the tremor. Many of the disabling symptoms are invisible or can appear as annoying public behaviors such as excessive slowness in a check-out line or a crosswalk, or standing rooted to a spot, disrupting the traffic flow. Such people are painfully aware of the effect they are causing, but are simply unable to overcome their ruined brain chemistry and just move. Please, be patient.

I thank you for your kind attention to this note and look forward to seeing you soon.

Best wishes, and congratulations on another school year brought successfully to a close.

[signed]

[Hidden]

Having been a middle school/elementary school teacher when I was told I had PD after years of mental "fog" I can relate to your experience.

I feel you did a good job with the letter and everyone should be more at ease when you reunite.

Let us go how graduation goes.

[Parkinson_Schmarkinson]

Thx DiCan.

[Kadie57]

I find the letter way to long, however you must feel the need to explain, so it does explain. You are talking to adults not children and the letter should be simplified and to the point, maybe give a website read more on their own about parkinson, I did like the parts of the letter ---paragarphs 3, 4 &5 then skip to 9 and close. I find myself not wanted to hurt your feelings so be assured this is your letter and your co workers and your PD so want you write is totally up to you, You did ask tho.

[Parkinson_Schmarkinson in reply to Kadie57]

yes i didi ask, your comments are constructive, thx. it;s; true I am wordy

[aliciamq in reply to Parkinson_Schmarkinson]

It was perfect!!!!!!!

[esrob]

Sorry, Kadie, I can't agree with you. I think this is a very good letter with just enough "whimsy" in it to lighten it without reducing the importance of what it is trying to do. I am occasionally asked to give talks about living with this wretched syndrome and am amazed how little people know or understand. Go ahead, Schmarkinson. Send it.

[Carrigan]

Great letter, great for you your friends and great for PD awareness, thanks

[jillannf6]

HI

A GFEA T LETTER

IT MADE ME BLUB A LITTLE

;LOL JILL

[PatV]

I liked it. I could see where I could send a similar letter changing only the profession and omitting early.

[Kat00]

Well written. I think your letter is a wonderful idea. People can be very accepting if you give them the chance to understand. Your message is clear, heartfelt and educational.

Bravo!

[wifeofparky]

I'm thinking of printing it up to hand to my Dad who doesn't understand my husband's PD symptoms at all. Very well written.

[Peaches]

Well said! I think you did a great job of explaining.

[Barb070]

I agree. A great idea for everyone involved...including you!

[tlongmire]

A great letter, send it.

[gran5-]

Well written!! Since you are the only one of us to have interacted with the pop. you are addressing our opinions are just that, OUR opinions. Anyway, what have you got to loose. Those who listen become better informed, those who have a negative reaction, weed them out of your mail listen and those who are impressed with what you have attempted to do, well those are called Friends!

[wordworks2001]

Great letter. Hopefully it will help foster understanding. People are so quick to judge. I worked on an offshore oil rig where alcohol was not allowed. I can't tell you the number of times crew members would ask if I was having DTs from not being able to drink offshore. Worse, some guys would automatically assume I was an alcoholic because of my tremors.

[Parkinson_Schmarkinson]

thx again to all...and I did send the letter

[shall1019]

sounds great to me.

would be interested in learning about responses to it.

Susan Hall (new to this board)

[Susie01]

I commend you on your letter. Halfway think about sending something like it to the people I worked with who ridiculed me for not remembering certain information and an insensitive dept. manager who insisted I continue blood draws on patients when my hands were shaking uncontrollably, then had the nerve to say she thought I was in DT"s!

There is a great need for public awareness regarding the demon we call PD.

[moonswife]

Parkin........Schmarkin,

Loved it. My husband composed and sent something similar just before the DBS to most on our Christmas card list, and fellow employees. THEN and only then did they start to understand.

Have fun with those kids!

[CheriH]

I liked it.....thought it sounded good to me. You did a great job of explaining. How did it go?

Cheri

[Jeni]

I liked your letter....thank you for letting people know. I am 48yrs old and I know when people see me shaking they wonder what is going on or why is that lady so slow.....just relax people and smell the roses.....I have Parkinson's and I didn't ask for it but I have to live with it the best way I know how.

[marilw]

Love your letter (and graduation speech ?) Prefect for adults and children alike in understanding a disease , a disability. To feel empathy and kindness for others. Something that is sorely lacking. You can use your platform and teaching ability to educate people of all ages.