Remain my Friend (slightly tweeked by me )

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. Invite me even though I may not be able to go , its lonely on your own. Please remain my friend.

Thankyou to those who have remained my friend and still invite me out and to those who took advantage by pretending to be my friend, you are forgiven .

However to those who no longer want my friendship you have lost your integrity in this lifetime and i'm glad your no longer in my life.

18 Replies

oldestnewest
  • Hi,

    Your words are fantastic and a true reflection on PD , i suffer so much shite these days it a pain ,however when i visit this site it helps me get a reality check on this crap hand we have been delt with.

    Ps got you message and will contact you soon, had a skype with Drew on sat , nice guy and i belive a friend .

    talk soon

    Al

  • Friendship is another name for "you become a member of my Parkers family " I remain a family member whether you want me or not ! Cos on the one hand your the only other person to understand what the heck i'm saying, with my accent !

  • hi gazellle and al

    yes friendship is the key ot keepign going

    i feel i hav ebeen spurned by sojme people who find it difficult ot understand why i am like i am

    ps i have skype and myu skype name is jillannf6

    :-) but#this sit e is great

    love jill

  • You have done it again Pet. Great piece sums it up very well. I know you can help Al hence the call. Be good.

  • Thank you for this - I find this site an inspiration and it helps me to go placidly along the twisted Parkies' path. Out of the mist - Tony

  • Thank you. This is exactly what i've wanted to say to people

  • How wonderfully you expressed my feelings. My cousin had all the symptoms you describe and people used to ignore her in conversations. I can only imagine how she felt. She once told me that inside she still was the same person and that is exactly what you put over.

    Thank you for sharing this with us.

  • Thank you so much for posting your letter. This is so wonderful. Again I have positive hope!!!

  • You have summed it up beautifully. Thank you!

  • Thanks for the post. Yeah, it's almost like one of those medical shows where the patient appears to be in a coma, but in reality can hear and understand everything that is said, but is unable to respond verbally or physically. I hear/understand all that is said to and around me, my mental faculties are all just as they were.... but I have trouble getting the words out in a sufficiently rapid manner in order to remain active in the conversation. So, I often get "left behind".

  • Awesome!! From slouching sometimes people - usually cashier's in stores ask me if I hurt my back - when I tell them I have PD they usually seem sorry they asked.

  • Having PD is not contagious and wearing our "tremor on our sleeves" sometimes brings up feelings of shame. Why is that? After all, it is not our fault that we have this condition. I sometimes feel too self-conscious, like I have this horrid brain disorder..(which in a way it is..) But.. I try to practice "Radical Acceptance" and just be me. If people don't have the compassion or understanding and the sensitivity to just be loving and caring.. AND patient(!) when they are with us, I say no loss. After all is said and done, we just serve a reminders to people that nothing in life is guaranteed and that they shouldn't take their "perfect" health for granted. Thank you Gazelleluck for posting. Keep moving forward! :-)

  • JAnellen's post describes my situation pretty well. I don't shove my tremor in people's faces but I don't hide it either. It's a visible sign that something is out of order.

    Maybe it's just that my symptoms are mild, but I must say that I get very few bad responses from society at large. My friends and family have been great. Sometimes people who don't know are impatient when i have "the slows"; sometimes people are a little too solicitous.

  • The sleeplessness - the emotions - the "wooden" face - the fatigue - the tremors - the voice - it's all there. But the amazing thing is: Every day is a new day! ... Thank you for the encouragement!

  • Thank you every one for the comments, it does make a difference to people who read it because half don't know that this is what happens with some people with Parker's.

    It is concise, precise and direct

  • Hi Gazelleuk, this is beautiful and I would like to send it to my friends and family!!

  • gazelluek...that is a beautiful piece of writing that holds so much information for everyone yet at the same time remains very personal. you have a great talent for the written word thankyou for showing it to us....

  • Gazelleuk

    This speaks volumes to all of us with pd, no matter what the age or stage of life with PD

    We are in. It as if you were inside head crying out " listen to me, I'm still a alive

    Person , not a non person, pleas treat me like one and accept that one day you

    Too may be with a problem liks PD but Im. Am still the same person, just slower".

    Thank you for the inspiration your thread gave me.

    Polyanna007

You may also like...