Now you're Cooking!

[Kat00]

I was just watching Top Chef Masters, a cooking show on US television where world renowned chefs compete to win money for their favorite charities. The chef who is currently in the lead has picked the Micheal J Fox Foundation for his charity. In the first 2 episodes, he has already won $16,000 . Needless to say, I am cheering for him! I just wish they would use this opportunity to educate the public about Parkinsons....

[wifeofparky]

The world needs PD education. Most people think of the tremor as the only symptom but we all know it is much much more. I pray he wins big time. We need all the publicity we can get.

[Hidden]

I hope MJFox Foundation can plug in some PD awareness adverts.

Chef Chris Cosentino's reply why he chose the MJFox Foundation for his charity :

Q

Why the Michael J. Fox Foundation?

A

"Top Chef Masters" is really all about the cooking, but the thing for me that was the most important was, whether I win or lose, I was able to put myself out there for something I believe in wholeheartedly. Parkinson's is a really debilitating disease, and unfortunately, the people who get it hide it -- but when the tremors come on, it really changes people's lives dramatically. My uncle died of Parkinson's, and I have some very dear friends whose parents died of Parkinson's.

[Carrigan]

That is great to hear thanks for sharing

[Court]

Couldn't agree more. Only the other day I was explaining to someone that I had Parkinsons. She replied, but you look so well and you don't have a tremor. Actually, I do have a tremor, but for once, meds were working. She had no idea of the many other problems we experience and was quite shocked when I told her.

[tmhiggs]

i agree everyone needs to be informed. im so sick of people saying oh you look good or you are moving around well and they look at me as if nothing was wrong with me. i say stuff like well my meds are working for me at the moment im not always like this. even back when i was working my co worker asked me if i was going to go out on disability adn i said i don't know i may have to and she said to me michael j fox has it and had it for yrs and he still works! what she doesn't know neither did i bec i was just diagnosed, is that it affects everyone different, progress different and meds dont work the same on everyone and not everyone has all the symptoms especially the tremor which i dont have. i am progressing fast and am literally immobile during my "off" periods which i have every day thruout. i fall all the time due to my very unsteady gait and weakness... i am now taking mu meds eveyr 2 hrs and started out every 4 and it s only been since 2009 and in only 43. i use a walker or cane always and scooter. i at times cant get dressed myself or cut my meat on my plate or even brush my hair and i need my husband's assistance. i can no longer work, drive and i plan everything around my pd and that doesnt always work. living with this sucks. i wish they would hurry up and come up with a cure or way better meds with fewer side effects. the stem cell therapy using our own issue sounds promising, but sure are taking their good ole sweet time getting it approved here in the states i hate when they talk about promising stuff but yet its going to take another 5 plus yrs to do trials and have it approved and blah blah blah.... forget all that i want treatment now... at least they can wait until its abut to be approved and then announce the medical breakthrough! so our hopes dont get up too much for too long. ok well i said my peace and am done venting. thanks.

[Joyable in reply to tmhiggs]

Suppose most people mean well when they tell you how great you look or, worse, how well you're doing when you're actually suffering & struggling. Some may want to believe you're okay & want you to believe it too. It's like saying its going to be okay when it's pretty obvious it won't. So very sad to feel horrible, be in a lot of pain, be struggling & have people tell you how well you're.doing. I've had a need for family & friends to understand & emphasize when no one seemed to. It's devastating to be living alone with it with people around you having no idea what it's like for you. Of course it's not as bad if you have some people in your life who get it. Hopefully you do.

All of us are frustrated at how long the wait is for new PD medications to be available for use. But it must be so much more frustrating & distressing for you since your PD is progressing quickly. Don't know whether you'd be up to being in any medication trials. It's possible that researchers could be looking for PWP with criteria that fit your situation. Either Parkinson.org or michealjfox.org has a tool where you can look at upcoming trials & check to see if you're eligible.

Thank goodness for this site which gives us opportunity to vent, share, empathize, support, suggest, inform, etc.

[Joyable]

Sure hope the foundation takes the opportunity for public awareness. Surprised if they haven't already. Going to check the website &, if don't see anything, will contact them to urge they do so. If they aren't taking advantage of this great opportunity, we should all be bombarding them with requests to do so.

[tmhiggs in reply to Joyable]

thanks joyable. i'm sure that the mjfox foundation and other foundations are doing everything they can it's just frustrating ya know. i know there are other people out there suffering as much if not more, than me. perhaps they are able to cope better than i. im just lucky to have a wonderful husband, family n friends, but it's still hard and very depressing at times. im just having a really bad day and i needed to vent some and this seemed like the place to do it cuz there are people, like yourself, who truly understand this horrible disease bec they go thru it themselves. and yes i have checked on some trials, bur am a lil leary. some of the side effects are worse than the pd meds.... i have to ask myself that if it's worth it bec i already feel so terrible do i want to make it worse and it's scary not knowing how it may affect you. im not sure im up to being a guinea pig. my doc and i are discussing deep brain stimulating, but again have to wait quite awhile for that bec i would have to go thru some extensive testing before hand which means more medical bills on top of the ones i already have.... i just simply dont have that kind of money. its hard enough just to be able to keep the house we live in. i just have to be patient i guess and live life right now to the fullest and keep faith and praying.