Israel from what I hear lead in pd research, but the simple social help to the common man after diagnose we are far behind.
I'm living in the big city Tel Aviv and there is no resource for newly diagnose, so sad .
Not even a support group, I'm with hope that things will change.
There so much that could be done to help, research are very important but we need help to cope with the new journey, with all aspect that includes.
Do you have continuing contact with somebody like a nurse? With their support you might be able to start a group of your own. Sometimes physiotherapists know people who also have PD and they could perhaps help you find others in the same situation.
Have seen a nurse just the other day, promises for next month. I've seen a research that been made for and by the parliament just this month , on the Parkinson awareness, hopefully something will be done to change the situation.
There is so much that need to be done, because nothing is done after one get the diagnose, I mean nothing!!!
Thank you for your support .
Shalom.
its like that everywhere i think friend, i waited 1.5 years to see neurologist and he sent me home in 5 minutes with a prescription and my diagnosis
Shalom my friend
What I'm talking about is the coping problems newly diagnosed facing, and with so much funding for researches some should go for us the PwP programs In Israel, one of the leading researches companies and all the big funding around the world, can surly help.
Yossi
Unfortunately I think lack of appropriate support on diagnosis is a common problem in many countries.
I guess you are in touch with this group
And also this is going in the right direction it seems epda.eu.com/en/projects/str...
Yes I'm a member of the israeli Parkinson association, guess there is so much they can do, the government or strong founds can do more to get the situation better.
Guess the only thing for me to do is try my best to get the problem known, maybe I can make awarness and hopefully make it better .
Hello Yossi
I have a friend who had no support for her condition in Australia and so she found a rent free room in a health centre, advertised in a local newspaper and put notices up on noticeboards about the support group she had started and which she has now been running for nearly twenty years. Unfortunately the health system and government have not seen the value in her group and so she has had no support despite many letters but she has a very loyal and grateful following of some thirty people with her condition, whom she has helped immeasurably with advice and social support that has led not only to their healing but to hers also. I am sure there will be grateful people out there if you start your own group. Cheers, I hope that helps. Have a nice day.
Shalom bitsy
Today is Memorial Day in Israel so everyone is in spacial mood.
Yes I think about what you wrote, who knows what the future brings, I went today to a program in Tel Aviv, it wasn't a support group but still the gathering makes one not feel much better.
Really believe that Tel Aviv as the bigest city of Israel can offer much more, hope I can be of help to get things going .
The PD drug "Azilect" is from Israel.
Shalom
Yes it is Teva is an israeli company, and a very good one , but it doesn't mean that the citizen get much benefit out of it, the government get a lot of taxes that goes for other things, Parkinson is not one of them I guess.
I have found out that here (at least where I live in the UK) I don't think the support is much better. There is a local support group which clashes with my voluntary work day, so I don't go. But I really mean the medical side of support
I think personally the medical care is absolutely atrocious.
Is there a parkinson's nurse in your area?
Shalom
Sorry to hear that , I find that voice need to be heard, when one feels neglected.
I try to .
Yossi555
I live in the States, been diagnosed for nine years, only occurred to me a couple of years ago, that here in the States, the Medical System fails to tell the PD Patient what is going on. As a result I loss opportunities to impact the progression of my symptoms or manage those that I had. I have thought about what I wish I had known in the beginning like you are yourself. My advice is look up Forced Exercise, LSVT BIG Physical Therapy and the book by John Pepper. Research the impact on joint flexion / extension. Here in the States even the APDA is not a source of this information. Use Google and Youtube. You will need to find your own way. Good luck.
BillDavid
I think there are several problems showing through in this post. I can only tell you from our experiences what tends to happen in Cornwall, UK.
Many consultants do not tell a newly diagnosed person about the support that is available because they either see it as not their job or they don't take the time to do it. The support and chat is left up to the Parkinson's nurses or an internet site search which brings up Parkinson's UK. They have a helpline and peer mentors to talk things over with you.
Some consultants take the time to tell the patient about support, but at initial diagnosis this often goes over the head as one is struggling to come to terms with the diagnosis.
In Cornwall, the nurses are provided with packs of information from the local branch of Parkinson's UK so the patient can go away with it and read it when they are ready. However, I find that many people forget about it during the denial stage, or the dazed and confused stage and it is the care giver who remembers and finds out more.
Owsod, I agree that many gatherings are in church halls during the day and for that reason we set up the Cornwall YOPs which meet in the back rooms of pubs in the evening. I send out a newsletter once a month and have at least 50 names on the books.
Can I ask everybody what support they feel is lacking near them? I could use your comments to refine the Cornwall response to diagnosis.
I agree with you, Soup. At the beginning, I was given no real advice - just handed some pills and told I had Parkinson's. As my only experience of Parkinson's up to my diagnosis was my father-in-law who, for the last six years of his life, sat curled up in his wheelchair and was barely able to speak, you can imagine the effect my doctor's brief "announcement" had on me!
I have certainly found it helpful to be open about Parkie, to find a group or form a group and to keep mind and body as active as possible whilst as sensibly as possible respecting one's limitations. It ain't easy, but it is not impossible.
We can learn a great deal from people like yourselves.
Soup
Interesting comments. I agree the reasons you give why consultants may not not give info re support available and I am sure there are more reasons as well. In fact i wonder if consultants of any type give this sort of info eg do MS patients or arthritis pts get told of patient support groups? Maybe there is a need to re think how to support people with PD from the time of diagnosis. I'm thinking of something bigger than just expecting medics to do this (as i said do they for any condition?) but a recommended care pathway with support structures. I'm sure there must be models already in some places.
Although almost anyone in the civilized world has heard of the nation of Israel but it is still a tiny nation with a large budget committed to protecting its citizens. From east to west it is about as far from the east side of Houston, Tx to the west side of Houston, Tx. and north to south about 100 miles or so. But as someone has pointed out it isn't much better here in the US. I have one of the best known Parkinson's diseases doctors in the country (I believe he is also Jewish) and I can tell you he works his tale off but is overworked and that's just the way it is.
Listen to the advice you will get here and from other boards. Besides Azilect being developed in Israel there are other interesting developments there where you might want to try and visit to see what's going on there. For example a small company Brainstorm Cell Therapeudics is working on a type of adult stemcell development that if it works out for other diseases could potentially work out for Parkinson's. They've have a call scheduled for April 28th to discuss what's going on there now. If I lived there I believe I would contact the CEO and offer to buy him lunch or dinner to find out what's going on there for future Parkinson's cure.
BrainStorm Hosting Conference Call to Update Shareholders on Important Developments
NEW YORK & PETACH TIKVAH, Israel – April 22, 2014 – BrainStorm Cell Therapeutics (OTCQB: BCLI), a leading developer of adult stem cell technologies for neurodegenerative diseases, announced today that it will hold a conference call on Monday, April 28, 2014 at 8:45 a.m. Eastern Standard Time (EST), 15:45 Israel Standard Time (IST). Mr. Chaim Lebovits, BrainStorm's President and Principal Executive Officer will provide an update to shareholders and discuss important company developments.
Thank you very much , but understood that this company don't do research for pd anymore
That is true but much of issues regarding safety addressed in a trial for ALS will possibly address the same for PD. I am certain that if their cure works for ALS there will be plenty of money and interest to continue PD research and it won't be necessary to start like it's a totally new and unknown treatment.
I'm fortunate in New York to be part of the Parkinson's program at the JCC. Someone there must have ties to someone here. jccmanhattan.org/parkinsons. Sometimes you have to get the ball rolling. Help will appear.
Shalom Pat
Really hope that help will appear , do my best to have the ball rolling.
Guess time will tell.
Ha'yom Yom hazikaron la'shoha.
I"m sure you're not the only one. They will appear.
My neurologist says grief is a factor in PD and stress so survivors have much to share. Tomorrow the anniversary of my son's passing and my PD appeared by the end of the year. No coincidence.
Shalom pat v
Guess I wish I was in NY, but happy to be in our homeland Israel.
Hope to have some "home" for Parkinson patients in TelAviv like the Jcc in Manhattan. who knows maybe now is the time.
Wish someone from the Jewish community in the state could helps make it happen
Shalom
Ve'lehitraot
Yossi
Thank you very much Bill, really try to find my way in this new journey
Do every day my rutine excersies.
Really hope that things will change here in Israel , and the government have awerness for Parkinson .
Shalom
An update from the Cure Parkinson’s moderation team
Neuro Protection 
Neurologist says probably Parkinsons, no medication as yet, what to do now!!
Reply from MJFF re High Dose Thiamine
In the UK I understand that there are no care homes specialising in treating people with PG. Why?
