Hope For A Cure: I never thought in a... - Cure Parkinson's

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Hope For A Cure

Christirae profile image
23 Replies

I never thought in a million years that I would hear the words,"You have Parkinsons Disease''. It took me awhile to believe it myself. I knew nothing about what to expect. I knew people shake and that's all I thought would happen. I now know it pretty much is a disease that involves most of your body. Pain,Stiffness,Movement,Depression,Even the way our looks changes. It's dang scary. Why me, I asked myself but I have no answer. I guess I just have to accept and do the best I can. I hope this site helps me connect with some people and we can help each other.

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Christirae profile image
Christirae
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23 Replies
Court profile image
Court

Your feelings on discovering you had Parkinsons were exactly the same as mine. Although having seen a close family member with the disease prepared me somewhat. However, no two cases are the same. I have learned that no two days are the same and just take things a day at a time. It is good to have a connection with other people as you can feel isolated. Let's hope we can support each other.

Christirae profile image
Christirae in reply to Court

The one day at a time, I can relate too. One day I feel great an the next I feel pain and exhaustion. Exhaustion is the hardest to expalin, I look like I fell ok but sometimes I feel like I can't take another step. I don't like to complain but it's true.

Court profile image
Court in reply to Christirae

I also get very tired but have part time care for my two grandchildren. Have just had a further setback having been diagnosed with angina and am waiting for tests for diabetes. I was diagnosed with Parkinsons about six years ago and have days when my tablets wear off quickly. My Parkinson nurse is very supportive and I try to carry on as normal although I have also been known to grumble!!

Christirae profile image
Christirae in reply to Court

It sounds like you have alot of things to cope with, but I bet you enjoy those grandkid's. It's great that you have a nurse to help you. We all grumble sometimes, it's ok. I will put you in my prayer's

mazpar profile image
mazpar

hiya hun .i'm 13 years down the line, had deep brain stimulation 4 years ago in march, so keep positive, has it has opened up my life. and improved it by 80% i am doing things that i'd have never had the confidens to do. i am currently hoping to get a grant to teach how to do a radio show as i live for northern soul music. and still manage to dance love life to the full is my motto cause you only get 1 chance at it.

philwebstersongwriter profile image
philwebstersongwriter in reply to mazpar

Well said... Being a songwriter I can identify with your outlook. Although dbs has never been mentioned by medical staff it might be me who suggests it.

Christirae profile image
Christirae in reply to philwebstersongwriter

What kind of songs do you write?. I write poetry and songs sometimes too. It's what I love to do!

philwebstersongwriter profile image
philwebstersongwriter in reply to Christirae

I'm a pro writer working with a few writers and mentored by dec from the pop group the bachelors. Take a peek on philwebstersongs.com

Christirae profile image
Christirae in reply to philwebstersongwriter

Wow! is all I can say!,

Christirae profile image
Christirae

Now, thats a good attitude! keep dancing

mazpar profile image
mazpar in reply to Christirae

thankyiu for the reply hunny , how long and what age were you diagnosed and are you in uk?

Christirae profile image
Christirae in reply to mazpar

I was diagnoised just this year but I have had symptons for years. Just didn't know it was PD. In the US

DebbieM profile image
DebbieM

I know exactly how you feel!! I was stunned but I have not let PD get me down. I believe God puts "bumps" in our lives to make us stronger. My PD is a "bump" that I speed over!!

Christirae profile image
Christirae in reply to DebbieM

He won't give us no more than we can handle. A good attitude helps!

mazpar profile image
mazpar

thank gooddness you two ladies + gent have the same outlook as me ,i was talking to a lady in uk online actually on a bingo site last night shes gonnnna be hopefully one of the first people in her area to have stem cell dont know much yet, but will find out more as i get to know her more , oh bye the way my names maria. Out of interest what ages were you when diagnosed . and what ages r u now,

DebbieM profile image
DebbieM in reply to mazpar

I was 47 and will be 53 in November!

JoelSchnoor profile image
JoelSchnoor in reply to mazpar

I was 38 and am 50 now.

JoelSchnoor profile image
JoelSchnoor

Hi Christirae,

I appreciate your post and the comments. PD has helped me to reprioritize (or God has helped me through PD, rather). I wake up every morning ready to seize the day. Some days I can seize easier than other days, but I'm always trying. I refuse to sit still.

I encourage everybody to stay as active as you possibly can. Exercise, read, write, and stay involved with people!

God is good, and I have this disease for a reason.

Cheers, Joel

DebbieM profile image
DebbieM in reply to JoelSchnoor

Exactly Joel!! I agree, staying active and interact with people just like normal. My husband and I ride a Harley. We have many friends and when I got PD they were there to encourage me. One example of their support is when we go out to eat, who ever is sitting by me helps me if I need it. My tremors are mainly my right hand and cutting a steak is difficult. But with the help of a friend, who doesn't make a big deal of helping me, I am able to enjoy them meal right along with the rest of the gang!! I also found a exercise place with 2 very special Ladies who have several PD people. They know what I need to work on and boy oh boy do they work on me!! But it's all good. There again, the fellowship with the people is as important as the exercise!! I could go on with more, but I guess by now everyone has figured out, PD will NOT stop me!! My grandkids and kids are wonderful too!! Grandma has the "shakeys" and help me when they can. My hubby is wonderful as well!! So don't give up, keep on doing what you do and with God, family and friends life goes on!!!

Christirae profile image
Christirae in reply to DebbieM

Seems you are alot like me. We had a Harley and loved to ride. We did sell it and now have a ATV that is also fun. My kid's and grandkids are also understanding and wonderful too! My friends and Hubby support me always and that makes thiings so much easier. Have a great day!

Christirae profile image
Christirae in reply to JoelSchnoor

You have a good attitude! I go to work everyday and love my job and I write poetry. People have encouraged me to get them published. I'm getting the confidence to try it, hopefully one day I will. It keeps my mind on the good things in life. I never want to feel sorry for myself God Bless you Joel!

Ronald profile image
Ronald

Iam 74 had parkinson for last 15 years Parkinson is such a part of me that the inconveniences of thediseases seem natural as though I were selected for some strange reason to awaken each day for the rest of my life with the reality that my body has dramactically changed But I can accept it If these changes the life and gives hope to just one person who has parkinson that I have achieved something worthwhile

MagicMax profile image
MagicMax

There may be some hope for a cure after all! Check this web site: fightingparkinsonsdrugfree.com So far three people claim to be totally cured using this holistic approach. I am starting work on this; so time will tell. Good luck...

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