Hi All,

I recently got an invitation to address the Board of Governors of the California Institute for Regenerative Medicine (CIRM), the CA state stem cell agency created by Prop. 71, to give a patient's perspective on Parkinson's disease. AJ and I get invitations like this every once in a while, and we try to accept them because they are often an excellent way to raise awareness about PD and the importance of having patients in the decision-making mix. Although I delivered the speech, AJ and I co-wrote it, as per usual.

It wasn't until I got news that the video of the talk got picked up by websites in countries as far-flung as Russia, Malaysia, Japan, as well Pakistan and Iran, that I began to understand the long reach of the CIRM in the scientific and patient communities. Luckily, it was a short talk, to the point, and my meds were working. So I thought I would post it in our own backyard here at Neurotalk as well. The themes will be familiar to many, unfamiliar to others, but I hope it provides some new info to most. If nothing else, those who know me will see how grey my hair has become.

Enjoy,

Greg

Link: http://www.youtube.com/watch?v=DA5xfo3sovA&feature=plcp

Terrific speech!

Jean

i hope you keep the forum informed more often about PAN and other things you do..

it is full or informed people who care.

Paula,

Excuse my paraphrase of your response. The point is, you are absolutely right. PAN is about advocacy. Advocacy is about inclusion and numbers sufficiently large to to convince policy makers, elected and administrative, that they should care about your issues. To get those numbers, people need to have enough information to decide whether or not they want to get involved. As you said so succinctly, they need to be informed.

I will do my best to touch base here more often and provide updates on current issues and efforts at PAN. I promise.

Greg

I will now reiterate from the past and now from my present as confirmed for me at my last Chemo therapy treatment.

It is not enough to be involved as patients. You need the help of those who are well enough to to assist you in making your needs known to the general public who in some cases have never heard of what you are relating to even.

Parkinsons is far less known than Cancer and far more to receive monies from every charitable gig going. Cancer time.............. party, party, party.

In Canada we have Michael Fox for Parkinson's and Terry Fox for Cancer[ not related]and yet the millions of dollars raised are not doing it

FINDING A CURE

Why???????????????????

Cancer is not a party time event nor is Parkinson's

What do these parties cost. How can you buy a costly gown and shoes and go out and have fun with the premise you are doing 2 things, having fun of course and forgetting the hurts out there past the party lights.

I want to scream now and yell and tell the world to get serious.

Tell the governments to get serious.


If I go any further I may end up screaming and I am alone all day every day and perhaps it is getting to me now.

I can just see and feel what the world would be like if all knew that if ever they were to get any of these foul diseases they could find help and indeed cures.

The tension of diseases and illnesses follows us all the days of our lives and yet even when the personal suffering begins we still carry on the same way.

So do we as human beings have a disease or are the diseases what we are.

hang on there Thelma you may be losing it eh

Thelma we are all losing it in one way or another; it's good to see you back.

To greg, ann, carrey and all; sure wish i could be there when you are working on book interview questions. this is straying off topic but it's something i just haven't got around to explain yet.

on the forum, we spoke many times about living together in a group home, but it's not going to happen for many reasons. i had an insurance policy that will cash in if you can prove that you have less that a year to live.
so i put my own house up for sale and moved into a 4 bedroom condo on the river just outside Cocoa Village. It is like living at a resort- well almost.

so i've been here since june 1. i am given two months to two years to live - this is almost a formality, i estimate 6 mos and am not feeling better yet from shrinking the tumor. cancer and pd are both different for everyone and i fell twice on the area of treatment [my chest] i am waiting for the soreness and bruising to go away and then see what's left. ok now to the point. i have 2 homes to use if visitors want to come- some have beds and some wilnl need to bring air mattresses. we could have a reunion and i could see everyone again. of course it costs money and there won't be help for individuals. if you need a carer please being one. you are all on your own money and caregiver. mine are busy enough.

that's my way out. and i'll plan a dance = prom? casual? any way you want it. i can't be a hostess, but i would sure love to see you all again. i have company coming through mid august who are family but they'd love to meet my "other world". it's hot this time of year but that's what air conditioners and swimming pools are for, if i run out of room - with air matresses we'll manage.

ok this began as a thread on communicating more, i think we need to have that dance. let's do it.

thinak about it all.......this forum is exceptional- it's a "professional forum" and an Integral point of inquiry. The questions are repeating themselves on Parkinson Movement- they are a younger generation. we could save time by taking them 1 by 1 and tutoring them.

ok that's it. thelma, US citizenship not required. i would love to meet you, as well as Bob Dawson. Imad. and many more

i an inviting all of u down but the dance will not be a prom! gosh i get optimistic at night. however, my apartment is big enough to make a dance floor. think about it. i'm aspirating now, have trouble breathing and can take a little oxygen here and need to start nebulizer treatments. this is moving and i am truly glad for that. i'm not looking for sympathy- i got this place so i could have people down. i don't know what to expect energy wise so think it over while i still have time to improve. PM me if interested. this sure beats assisted living. Hospice visiting tomorrow.

I have never known what stupid song is an about, but AJ and I have been talking about a visit for some time now. Paula, consider this a solid yes to your wonderful invite from the two of us. Carey is flying in tonight for short visit, and my guess is she will want to be there too. We understand the circumstances, and if at the last minute you just have to cancel, or even cut the visit short, we can all head up I-95 and stay with my Dad until the return flights. I will PM you shortly as soon as we talk to Carey. There are others I am sure that would like to raise a cup to Auld Lang Syne and even New Lang Syne. That can wait til we PM as well.

You pal,

Greg

i'll email you about dates, i couldn't get a private message to you. carey may have received it.