For those who care for someone with Parkinson's disease
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By karolinakitty On 2010.04.23 16:25
Caregiver defintion according to the council on aging:A broad term used to refer to an individual who provides care to another individual who cannot care for him or herself due to a disability or functional limitation.The care may be provided informally by a relative, friend or neighbor or by a paid individual who may or may not be a licensed professional.

I'm angry today..... angry because i was insulted and maybe i took it too personally but i am hurt by it.
To try and make a long story short. My PDer used to have a website where he reburbished old Penn fishing reels plus got into the powder coating of these reels. Way back in August, a gentlemen called about his poor reels that his buddy in Costa Rica left un-cleaned after a saltwater adventure. When we finally received the reels in November, Boy were they bad. Saltwater ate them up, as it will do. So dealing with this guy over the next three months of indecision, finally decided not to have them powder coated but annodized. Then three months later WE got em back.... unannounced..... I notified the gentlemen, that the PD had worsened and he could not fix his reels nor does he have the website anymore. Well he just about ripped me a new one. I gave him a referral to someone who could fix his reels and he still wasn't happy. He then received the package and informed me 3 reels were missing. Not my fault they had been out of our hands for three months. I kindly told him to bug off, but he persisted. Said his reels were worth $2k, he's gonna sue and all this other crap.
Now for all you facebook addicts beware. Facebook just added a see-all and allowed it without your consent. as this man, not a friend on facebook, went into my facebook account and saw my guy had powder coated me a wrench set and a meat grinder. Now, he putters still, for me, for others ... he needs that puttering to keep him going as you all know. PLUS this guy made a comment in regards to the 45lb snapping turtle i caught the other day. He said he didn't know that caregiving 24/7 meant baiting fish hooks.....

Well I'm going to vent here, because it made me so angry......

YES IT MEANS BAITING HOOKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

As we are all caregivers in various stages, i'm sure the consensus would be we do everything...... from early morning to late at night... we do it all. whatever makes our caregiven comfortable. Whatever makes them happy. WHATEVER!!!!!

Now a lot of you are dealing with obsessive behaviors. If the worst mine gets is his obsession to keep busy and go fishing, SHOOT I'm in heaven!!!!!!! I've got it made compared to most. But if doing something as simple as baiting a hook and throwing out fishing lines makes him happy, happy to be doing what he loves best until he can't do it anymore, then by God i'm going to do it.
Whatever we can do to maintain and live life to the fullest, then that is what caregiver means to me.
He also said that PD was not that serious an issue, he just shakes a little. MAN, I just wanted to smack him off the head.....Am i defensive????? You bet!!!!! I am tired of hearing the shaking thing. There is a lot more to it than that. Soooooo, since he wants to read my facebook i posted a whole series on PD and how it is not just shaking, how the meds effect the pdr, how there are variations including young onset. how being a caregiver is more than baiting hooks and giving meds.
Care, compassion, loving, hating, angry, depressed, stressed, financial burden, venting and all the rest..........
How can a disease so dibilitating, be taken so lightly and fluffed off. Perhaps he never knew anyone with it. Good for him. I hope he never does. But it isn't just him, there are so many others out there unaware the nightmare this disease can bring.
While i don't dwell on the bad stuff. I dwell on the today, here and now. Tomorrow may be a different day, tomorrow may be worse than day BUT it could be better. I deal with it as it comes......
Thanx for letting me get it out so i can move on.....

By LOHENGR1N On 2010.04.23 16:44
kk, On behalf of all Us Parkinson's Patients and Our Caregivers/partners alike I say a big THANK YOU for posting about Parkinson's Disease on your facebook page! Unfortunately that stigma has persisted that it's just a tremor and nothing serious! Through actions like yours We can hope in time to educate and inform the general public about the devastation this disease causes not only upon the life of the patient but upon the lives of family involved.

Below is a post I posted on the YOPD board here about MJF and the network's disservice to US (the Parkinson's community) involved in living with this FATAL Disease!

A lost chance to medal @ the Olympic's
By LOHENGR1N On 2010.03.06 00:52 [Edit]

Did anyone else happen to see the closing of the Olympics? One thing that I thought really stood out was the appearance by MJF and the way the network showed Him or should I say didn't keep the camera on Him. It seemed He was experiencing dyskinesia in the form of mouth puckering and licking of the lips. I give Him credit for making His spot with all the attention upon Him through it.

The media's portrayal of Our disease.
This is something We have to put up with and let Me say it is very unfair to all Parkinson's sufferers. Tabloids scream about MJF at function's, at amusement parks, telling He's beat this disease. How great He looks. Oprah can juggle the taping and timing to present Him at optimum medicine efficiency. This was another thing entirely the Olympics timing was off. MJF was off, the network for some reason chose to turn the camera off Michael. Too His credit He was out there for all the world to see. To show the world another side of Our disease, to show the world it isn't as rosy a picture as the media paints it to be. That even MJF has struggles and times that might be unpleasant to view. When this is presented what does the media do? They do a dis-service to all of the Parkinson's community and pan away .....They didn't even show His exit as They did with previous speakers! It is no wonder the Parkinson's Disease community has trouble procuring funding for research, funding for finding a cure or easing the burden. In the past I've been guilty of criticizing Michael J Fox for timing His med's and appearances. This time I applaud Him for the courage to show the world! Sadly when He did the network decided the world needn't see it! I'm really stunned and at a loss here, what else can be done to raise awareness? I mean really Michael J Fox stepped up to the plate and the network gave Him an intentional walk! ...Sigh....Take care, best of luck and hang in there.

By karolinakitty On 2010.04.23 19:03
Thanx Al ... I remember reading that ...... While MJF has done a lot for awareness of the disease on other roads he did an injustice early on about showing the tremors and how severe they are. Yes, There are those that have an awful time with them and it is not put on nor is it funny. The media sometimes goes both ways on issues and that's just the way they are.
Maybe, if we, both caregiver and patient, were a little bit bolder and not so afraid of privacy being invaded, i guess it wouldn't hurt if someone somewhere did " A day in the life of a Parkie". The struggles and the funnies. There have been many sad stories and ventings here on the board, but also a lot of funnies.....
We can laugh and we can cry about what goes on with this disease. The unknowing and the unsure future we all face. It's the world that only knows what they hear or see through the media that gives it a half look see.

By parkinit On 2010.04.24 23:04
I think of MJF and how he didn't want to show his tremor. I think of my husband who tries to ignore the rigidity as much as possible and "carry on." Are the two so different - wanting to exist and not be treated differently because of PD? I'm glad he was able to do this for awhile, my husband, i.e. I'm glad he could still maintain normalcy with meds . . . for awhile.

Now, he scoots down the hallway grabbing the rails, cursing the disease, many times shuffling in place and unable to walk. "Damn this disease!" He shouts to himself more than me. I internally echo his sentiment - "Damn this disease!" And then I gently hold his hand, guide him to a nearby seat, hug him and wish I could take it away. It's not easy being him. It's not easy being me. Love will see us through.

I saw the previous posts about the will to fight. Even though we've had many broken bones, etc., I'm glad he's a fighter. It gives us both hope until, at last, even that is ripped away from us.

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