I urge you to do the same.

A LETTER FOR MY FRIENDS (author unknown)

I have Parkinson's disease. It is not contagious or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everyone slowly loses some dopamine cells as the grow older. If the cells suddenly begin to die at a faster rate, Parkinson's disease develops. It is a slowly progressive disease usually occurring as people get older. Medicine can help. I'll take newer, stronger kinds over the years. Some make me sick and take lots of adjustments. Stick with me. I have good days and bad days.

Emotions: Sometimes I cry and appear to be upset and you think you have done something to hurt my feelings. Probably not. It is the Parkinson's Keep talking to me. Ignore the tears. I'll be ok in a few minutes.

Tremors: You are expecting me to shake. Maybe I do, maybe I don't. Medicine today takes care of the tremors. If my hands, feet, or head are shaky, ignore it. I'll sit on my hands or put them in my pockets. Treat me as you always have. What's a little shakiness between friends.

My face: You think you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression, that's the Parkinson's I hear you. I have the same intelligence, it just isn't easy to show facial expressions. If swallowing, I may drool. This bothers me, so I will mop it up.

Stiffness: We are ready to go somewhere and I get up. I can hardly move. Maybe my medicine is wearing off. The stiffness or rigidity is part of Parkinson's Let me take my time, keep talking.

Exercise: I need to walk each day. Two to three miles is good. Walk with me. Company makes walking fun. It may be a slow walk, but I'll get there. Remind me if I slump or stoop. I don't always know I'm doing this. My stretching, bending, exercises must be done everyday. Help me with them if you can.

My voice: As my deeper tones disappear, you'll notice my voice is getting higher and wispy. That's the Parkinson's I know you can talk louder, faster and finish my sentences for me. I don't care for that. Let me talk, get my thoughts together and speak for myself. I'm still there. My mind's okay. Since I'm slower in movement, my thoughts are slower too. I want to be part of the conversation. Let me speak.

Sleeplessness: I may complain that I can't sleep. If I wander around in them middle of the night, that's Parkinson's It has nothing to do with what I ate or how early I went to bed. I may nap during the day. Let me sleep when I can. I can't always control when I'm tired or feel like sleeping. Be patient, my friends. I need you. I'm the same person, I've just slowed down. It's not easy to talk about Parkinson's, but I'll try if you really want to know. I need my friends. I want to continue to be part of life. Please remain my friend.

(The preceding was written by the wife of a man with Parkinson's This is her version of what it might be like to have Parkinson's Mr. Ahlstrom gave me permission to use this letter.)

Steve

Dear Friends and Family,

I feel the need to explain what is happening with me right now . You have all been so very helpful, kind and extremely patient. I have been dealing with a double edge sword, Parkinson’s and pride. The Parkinson’s part is very straight forward. I have a disease that is progressive and could eventually incapacitate me.( I couldn’t admit this a month ago) How long it will take for the disease to progress is anyone's guess.

You have seen signs that it has progressed to a full body symptomatic case. At this point without the masking drugs that I take, my Parkinson’s symptoms would be full left and right side limb tremors, a head tremor and a more severe balance issue. If I am tired or am under stress the symptoms are magnified 10 fold. Which is why I try to avoid situations which would induce these triggers.

Let’s talk about pride. I have always been one to beat the odds. I was born a premie, was ran over by a car TWICE, wore Forest Gump shoes and still played sports. I have challenged myself at every step to make my life and people around me better. I have always been in control of my destiny and my body.

Parkinson’s has begun to erode control in all aspects of my life. I can no longer tell my hand not to shake. Not even the full concentration of my mind can stop the index finger of my left hand to stop twitching. I have found myself face down on the floor without a clue as to how I fell. These things, as you have guessed, can be very frustrating if not a little damaging.

I have been told recently to start preparing for early retirement because I will not be able to fulfill my role as a teacher in 5 to 10 years. I love to teach. I can’t even control the events and situations that define me as a contributing member of society. Pretty soon I will walking down the street with a service dog as a companion.

OK, with all this said, let me try to explain why I have been resistant to help and compassion. I found myself to be very embarrassing in public. I use a walking stick, shake at inappropriate times, and feel like a human pinball. (I felt really uncomfortable in the Macy’s crystal department) I get very frustrated with my inability to do exactly what I want. Sometimes I would rather hide out than be in view.

This frustration turns into a fierce determination to be independent and sometimes foolish. Some examples would be climbing a ladder to clean the gutters, eating alone rather than asking friends to help me carry my plate, forgoing the walking stick to look normal. I work myself into P-bomb episodes rather than stop. I will push myself beyond what is safe rather than admit I can’t. I have even taken on big garden projects that are probably out of my reach. Asking friends and family for help has been extremely hard for me.

I have been overwhelmed with kindness and opportunities this last year and haven’t been very receptive. In my mind this was giving in to Parkinson’s. Admitting that I am not going to be hale and hardy hasn’t been easy. A few weeks ago I hit the P-Bomb rock bottom. I had Parkinson’s episodes every day during a weekend trip with the guys. These episodes culminated in a very hard fall in which I injured myself. I left with very little self esteem intact. I had embarrassed myself in my own mind. The fact that I was with close friends didn’t even register.

So what does this mean to you. Please give me a little time and understanding. I realize now that I need to ask for help. That I need to be forthcoming with my needs. And, that I need to be completely honest with you and myself. I will try to answer your questions with complete disclosure rather than evading or sidestepping the issue. The fact of the matter is that I am learning to accept myself. Please help me along this path by giving me some space and patience.

I like to be spontaneous. Golfing new and challenging courses is always a thrill. I love to fly fish the Dechutes. My next interest or challenge is Pontoon boat fishing . Let’s travel to great places and drink in the sights and culture. Rather than redo the same old thing, let’s see what's on the other side of the hill. Diane and I are planning an awesome ski trip to South America next summer. To quote Rosalind Russell “ Life’s a banquet and most poor suckers are starving to death”. Let’s go eat.

Looking forward I realize how lucky I am. I have a wonderful life. I have a beautiful, loving and zany wife, who is my fiercest advocate. A family who takes me for who I am and is striving to accept me and the disease. Great friends who continue to astound and amaze me with their compassion and flexibility. I respect each and every one of you. I live well and have no complaints, well maybe a small one.