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Topic A rainy day letter to my disease Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2011.09.05 16:20

Parkinson's Disease,

You are a great mystery, Where's Colombo, Where's Mr Monk when we need them? We read stories about Your effects. Stories about side-effects of medicines, compulsions, dyskinesia, dystonia, freezing, falling and the list goes on. The unfairness of Your random destruction of the mind, body and families. The ugliness of this destruction. The blossoming in recent years of movement disorder specialists, cognitive disorder specialists. Teaching hospitals to some seem the best, to others no. (One side note about teaching hospitals to consider, more mistakes are made in them than other hospitals. Makes sense you're treated by those just learning. Yes there are heads of departments to catch those mistakes, however the mistakes are made then caught.) It's a personal choice and whatever One feels are best for them they should go with it.

Yes My constant companion Parkinson's Disease, 40 years ago written about as being the most understood of movement disorders. 25 years ago it was said with funding the cure would be found in 5 or 10 years. Yet you are still here with me and many of my friends.

Parkinson's Disease you are both my arch enemy and friend! What a statement! You struck Me in the prime of life I was 33 years old! You attacked and conquered my body! Through denial I was able to for years make you live with me, slowly you turned the tables and made me live with you. You, my enemy, un-planned my future, You stole my dreams and aspirations. A hard fact to face at any age! But through this You taught me there are other goals to try to reach. Other facets of life that are important.

You remind me of a story from my youth, of the four blind men who come upon an elephant. One touches the trunk and proclaims it's a large snake, another feels a leg and corrects him, it's a tree, still another feels it's side and says no this is a great wall. Lastly the fourth grasps it's tail and announces all wrong it is a piece of rope! Separately You are tremor or slowness of movement, upset balance and gait, a plethora of symptoms. But put together you are an elephant! You trip us up, constrict our bodies, block our way and stand impassable.

You daily remind me what I've lost, I'm not the round peg anymore, at times with medicine I might appear to be round but at best I'm oval. Time and time again as friends try to get back to round you remind Us we can't. No matter the hammer used, gene therapy, dbs, stem cells, if it works on one symptom another takes it's place, stop the tremor you steal the voice etc, etc. You have taught me about frustration. Boy, have you taught me! Let me tell you what I've learned. I've learned frustration is intensely personal. I've learned frustration is ego connected! "I" want to do this! I want to still be able to ....I.I.I. I can't stop my tremor! I can't do what I wish. I can't impose my will to overpower you nor can I use it to counter the symptoms of you Parkinson's Disease. Frustration is linked to the selfish little child I bare in me! Frustration is my little inner demon (more fitting a description than child) throwing a tantrum. I have learned that it is at times ok to write out my frustrations but along with that it is not ok to use others frustrations to justify venting mine upon others. I've learned that because others too vent their rants, they in no way should be taken as validation for in frustration being mean to anyone else. I've learned in life We all carry problems inside ourselves and we never know how a harsh word will land upon those hurts.

This is turning into a lengthy letter to you Parkinson's disease so I'll end up shortly. You have taught Me to pick my fights, energy spent on little nagging gripes is energy that may be needed later in the day. Spend each day as if it were the last to enjoy the things you're doing that day. Every day might be one's last but with you present to remind me I try to take nothing for granted! True you struck me in my prime but you taught me I'm still useful. I have reached and made friends that if healthy I never would have met. I could go on and on but if anyone is still reading this they are probably praying for the end so...I'll ask You a couple of questions my Parkinson's Disease; When You struck me did you think I'd learn so much, did you know I'd be a worthy foe? Did You in your wildest dreams ever believe after all these years I'd thank you for lessons learned?

So My friend and foe Parkinson's Disease we now return to battle! Both with a better understanding of each other, be on guard I'll try to thwart you at every turn as you will me! In the end I hope I will be judged a worthy opponent.
Sincerely Al.

By ILoveWil On 2011.09.05 21:59
WOW, If I were at a POW WOW right now I would lulu like every other proud American Indian woman. I'm not making light of the seriousness of what you have said. I'm just cheering you on. Al you are a great writer and this was the best ranting description I've ever heard of the personal and dreaded effects of this terrible disease PD. I would love to hear this at a Senate hearing on funding PD RIGHT NOW. Don't lose your spunk and don't lose your fight while there are people who will hear and just maybe someone with some clout will hear you and get an idea that can light the fire under politicians who have the responsibility to do something about the under-funding of PD. This kind of frustration you are feeling needs a strong voice - to the right people, at the right time and in the right place. I would like to see you send your story today to several editors of major newpapers and it might give you a larger audience....How about the Washington Post or New York Times? Just an idea, but I think others should hear your voice. Bless you

By karolinakitty On 2011.09.06 08:45
As always totally awesome Al....

You're writings are always right on top of things. reaching the world...at least we know Macedonia is listening..lol

By plcpainter On 2011.09.06 09:39
I agree with ILoveWil -- tweek this to emphasize the need for funding for a cure, then send out to major newspapers, Brian Williams, Oprah, etc.! When I taught HS writing we always emphasized "voice" as a major component of good writing. Your piece to PD exudes VOICE! Let it be heard on a larger Forum Al!! Bravo and keep fighting!

By Mary On 2011.09.23 17:14
Al, thank you for sharing with us. You have always given me the other side when caring for my Dad. You helped me understand things I never otherwise could have. I consider you a blessing in my life. Hugs and blessings to you always, Mary
P.S. You are really a GREAT writer!

By makrivah On 2012.12.19 00:44
Your words let me "hear" what my husband can't or won't say! As hard a burden as PD is for the caregivers, it is the PWP who bears the brunt of it.

By jcoff012 On 2012.12.19 12:11
As always, a wonderful post from an amazing person...thank you, Al! Hugs, Jane

By parkinit On 2012.12.21 22:31
Al, I am proud to know you through this forum. THANK YOU for being here.

By Michele On 2014.07.19 16:13
As I sit here while Dad, my PWP, is napping I came across this post. Since it's a rainy day here the caption caught my eye.
Al, if I may calllyou that, what an amazing post! I will continue to retread it over time as I watch my father deal with this desease. I pray it will help give me the compassion I need to do my best for him! Thank you

By LOHENGR1N On 2014.07.20 19:57
Michele, feel free to call me Al anytime. (lol, I'm sure I've been called much worse over these years (wink) ).

By Marilyn-NJ On 2014.07.21 15:08
I can say nothing else but BRAVO. This is such an incredible piece of writing....please don't just let it reside here.

By laylee7 On 2014.07.23 09:17
Thank you Al for your words of strength. I printed this off so I too can re read this. I only know what I see with my PWP. He tells me what I want to hear I'm sure, and holds what might scare, hurt me to know. I pray for you and all PWP . This unfair battle you have been given. I always say look for one positive thing a day. Smile if you can. For someone loves you dearly and will be by your side always. Hugs to all! And a special one for my PWP.

By Shakey On 2014.07.24 05:02
It is so true what you write and how you write, we all have different symptoms to our own PD yet you still manage to sum us all up with one story. Please keep up the good work

By trapper On 2014.07.25 22:22
Al:

I was certainly moved by your post Al.

Keep up the fight my friend.

By LOHENGR1N On 2015.10.17 16:27
bumped up because I needed to read it today and thought others might too

By Mary556 On 2015.10.17 20:37
Thank You, Al. Your words help me so much and many others whose lives you touch. I am forever grateful for the understanding and strength that you share with us in the face of every challenge. Your opponent PD will never get the best of you. You have already won. Keep fighting the good fight, my friend!

By Daybyday On 2015.10.23 14:38
Al, I am so glad you shared your perspective with us. It's very interesting to hear firsthand all the different nuances/affects that you are experiencing and how you feel about them. We are so fortunate to have you in our group of "warriors". There can be some moments of realization on this road that every so often and can get dark & difficult but everyone should try to keep chins up and stay positive. I'm praying for a cure! Come on baby... Please please please. There needs to be more funding and attention for our cause.
Daybyday


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