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Topic Thoughts on P.D. Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2014.07.16 19:47
We have a few new posters so I thought a quick glimpse into this Person With Parkinson's (PWP) drug and disease altered world may be of some help.

I was diagnosed in 1986 at the age of 33. Back in the early days information was scarce (mostly gleaned from trips to the library) Most of what We had to battle P.D. back then was Carba/L-Dopa (thanks the gods), skull drills, mallets and chisels. (wink) Whatever was in research and testing when released had 5 to 10 years of observance behind it. It was mind altering, brain related stuff and it had to be as safe as it could be.

Today, We have the internet, information and mis-information at our finger tips right from home. It can be confusing to all, Doctors, Patients, Loved ones, Family and caregivers/partners. Research is fast lane, funding rewarded to whatever shows promise the fastest sometimes at a cost to patients. TV is filled with ads for law firms suing drug companies on drugs that a couple of years age were the cat's rump as far as certain conditions went only now to be found with prolonged use to be harmful and in some cases fatal. Which if slowed down and followed for a few more years would have prevented heartache and loss.

We talk about the elephant in the room upon diagnosis the large problem P.D. but no one wants to acknowledge it what it means for the future. This elephant is not only in the room. In some ways I'm glad I was diagnosed back in the stone age. I remember the story of the 4 blind men from my youth. They happen upon an elephant 1 feels the trunk and announces it a snake! The 2nd steps forward to a leg and answers it's no snake it is a tree! The 3rd arms in front of him walks forward into the side of the elephant and says you're both wrong it is a wall! To which number 4 reaches up grasps the tail and announces all wrong it is just a piece of rope! Our elephant is a movement disorder! we need exercise! Not it is a sleep disorder if we solve that then rest will lead to exercise and movement or is it a diet disorder caused by eating wrong foods? Which when corrected will give restful sleep giving to exercise and movement? Not to some to them it is a psychosomatic disorder and once that is address it will lead to proper eating, restful sleep and exercise and movement. This isn't even addressing sight problems, breathing, blood pressure or swallowing and a plethora of others. Very, very confusing at time and if that isn't enough all claiming to work and competing for research dollars.

What can We do? Patients, pay attention to your body, try to eat healthy, exercise how and what you can, don't over do it, it will knock you on your back quicker than a wink! If you can only walk 20 feet walk the 20 feet and next week try for 25 if you can't then do 22 feet for walks daily at least. Eat healthy as you can, need a nap? We all know the world doesn't stop because we have P.D. if it doesn't care about that why should it care if I take a nap? However We do owe it to ourselves to stay as healthy and active as possible to battle this disease and live as well as we can.

Caregivers, I always admonish don't take over tasks or chores to soon! You'll be doing enough later on. If We're slow and you can do it faster don't! You'll only grow to resent it later on as time and disease progress. Don't be mean but don't baby us either because we'll let you. And you have to change your perspective and expectations We can't be like before in reactions or functions we can now only react like we have Parkinson's. Always remember you are helping us cope and live with Parkinson's......You're not going to cure it! There is no cure at this time, no stopping the loss of dopamine from cell death in our brains.

Temper your expectations if you set up a TV tray and carry our lunch and drink into us all the time being helpful don't get mad if we slop our coffee when we get it our self. With a couple of spills we realize only fill it half or three quarters full to avoid spills. (we have to experience it to learn it) plus it is extra exercise. Don't wait on us hand and foot doing everything including things we can still do. If you do soon we'll believe we can't do anything. Then get upset or despondent because we are dazed or stare at you in disbelief because you want us to go to exercise programs at the Y or Senior Center! As I said even a little exercise is better than none. Stand your Parkies in front of the counter (we can grab it if we feel dizzy for balance) bring in the groceries, set the bags in front of them. As they empty them you put the food in the cupboard. Picking up reaching turning twisting all exercise all helpful. Plus maybe an added extra of voice discussing what for supper beans or carrots? Maybe peas?

Just some thoughts and observations here nothing earth shattering. Keep it simple, cut stress, trim expectations and NEVER GIVE UP! hope it helps. Take care, best of luck and hang in there

By jcoff012 On 2014.07.16 22:59
All my love, Al....good post, as always...JC

By moonswife On 2014.07.17 00:26
I echo her thoughts. To all you new lurkers and posters. Al has the sanest, coolest head of all and his words are welcome and taken to heart.

By Mary556 On 2014.07.17 06:23
Our bro Lohengr1n also has a keen sense of humor. :)
"skull drills, mallets and chisels. (wink)"

By jaxrock On 2014.07.17 08:42
Thanks, I needed that!!

By olpilot On 2014.07.17 23:49
Thanks Al...your experience, knowledge, and insight help so much. Your right the internet helps but real life is worth much more. Living with it or with someone who has it is a never ending search for answers.

By Mary556 On 2014.07.21 05:25
L-grin, just so you know: I did take that bait (for about two seconds)!
thank you for making me laugh during a difficult week. Thank You for all your words of wisdom that we have come to trust.

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