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Topic Most effective .... Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2010.04.27 09:11
"We trust you'll find this site an extremely valuable source of information and references that will help you understand the nature of the disease. Just as important, we know this site will help you better understand how you can be at your most effective when providing care for your Parkinson's patient. You are just a click away from years of experience and insightful commentary on providing care for the Parkinson's disease patient."

I copied this quote from the home page as a reminder to us all......

A valuable source of information ... whether we agree with it or not......
Understanding the nature of the disease ..... whether we like it or not...

Understanding how to be effective ... whether it's similiar or different

Insightful commentary ....... insightful ...exhibiting insight or clear and deep perception

Well, nothing is clear with PD lets face it .. It's all muddy waters as each patient is different and each of us has someone who is in a different journey on that path.
Not everyone agrees, if we did it would be one boring life. Not everyone likes what is happening to our loved ones. Man, i hate it... it's so unfair. After an abusive first marriage and hanging in there for 24 years, i got the balls to leave. When i did i found the best thing ever in my life on earth. I found a man who loves me, respects me and wants nothing but for me to be happy. Then 2 years into our relationship he was having issues... now 6 years into it we are dealing with a disease that will take away everything of this man i love so very much.

Insightful .... my version is different, because i am coming from a different outlook.
WHile i have dealt with being a caregiver, while my man has dealt with being a caregiver...this time it is different ... i don't know why .. it just is...

I prefer not to look at any one thing as being an uh oh.... another symptom...
I want to know ALL that there is to know good and bad, BUT prefer to live life to the fullest that we can for as long as we can..... He's gonna get worse, he's gonna have issues... but at least with this sight i am able to read and review.....
Take all the issues and look at them from my perspective. That is what this is all about.
Sharing each persons wisdom or thoughts about what may or may not be happening.
My guy tells me... Don't bury me yet ..don't cry for me now ..... let me live with respect and dignity as long as i can ... don't, each time i sneeze, or groan about the pain make me lay down and go to bed .... i surely will die if you do. DOn't hover over me .... don't pick up what i've dropped... if i leave a mess out on your table..please leave it as i will get back to it......

I am not the one dying here.. i am the one to help with the dying. I will be the one to change the bedding, unclog the toilets, wipe his butt, shower and clean up after him. I am the one to put up with the all the drug issues and issues with the disease, but i am not the one dying .......

This website has been the best thing to happen in my journey as caregiver... upfront, insightful, learning and disagreeing.... that is my view
I disagree, or decide not to look at every little thing as a part of this disease or calculate where in this disease he is... that is my own insight, my own opinion....

You don't have to agree with me... i won't be upset or take it to heart... i will learn from it ..... that is how i am made.

I had a friend who died of AIDS.. iwas at his side most of his last months on earth.
15 years ago, it was far worse than it is today. the drugs weren't right they caused all kinds of side effects, not the same but similiar to PD. I'm not a virgin to caregiving and have been there done that. Maybe that is why i look at this time as different.
I don't want to make the mistakes i made in the past. I prefer to look at the time i have left with this man and cherish every waking moment, for as long as i can. It is only by the strength that the good Lord gives me that i will get through this. I know this is a public forum but i don't care.... The Joy of the Lord is my strength. His joy is what gets me through. Finally, after all my miserable first 45 years of life. i am NOT going to let this thing called PD get in the way of my happiness. I know it will give me bad times and sad times and worrisome times and all the rest.. but for now I CHOSE to be happy with what was dealt me and give a different outlook on what i am dealing with...

By parkinit On 2010.04.27 11:39
KK - so powerful - your comments. Thank you. It's a struggle, for all, but yes, we are with our beloved, our cherished. Yes, there will be times of frustration, yes, I hover too much (I want to take care of EVERYONE he tells me - even when they don't want to be taken care of - He is right).

Your note also magnified how important it is to talk about these things. Mine said, "If I drop things, please pick it up for me." Know your PDers needs, wants, desires. Allow freedoms as much as possible. My Pder and I have discovered new freedoms by recognizing his limitations - getting a motorized wheelchairs allows him greater mobility, to have "walks" again together. To get out more when he feels well enough to do so. Last night he said he "felt like a million bucks" until he exited from his wheelchair and couldn't walk. We were enjoying the neighborhood flowers, walking the dog, and he distributed dog biscuits to some of the neighborhood dogs (something he loves to do - make friends).

We need to keep them "feeling like a million bucks" as long as possible.


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