Parkinsons Registry

Yesterday, I met and spoke to several people from the Parkinsons Action Network. You can see their website at parkinsonsaction.org. ( or just google Parkinsons Action Network)

They work to bring all the Parkinsons network organizations together before congress to pass legislation for funding for Parkinsons research, medical benefits etc.

At one time they had looked into trying to compile a list of people with Parkinsons to document just how many people are suffering with the physical and financial burdens of PD.

It seems that there is so much legal red tape due to privacy issues that the only way to accomplish this is to set up a voluntary registry on line where PWP can stand up and be counted.

Congress needs to be aware just how many voters are impacted by Parkinsons and the general public needs to be educated on how prevalent and widespread Parkinsons has become.

If a site is developed where you can list your name and the year of your diagnosis, would you be willing to participate?

I would really like your thoughts on this.

If they also had a separate registry that listed people who have died WITH Parkinsons would you be willing to post the name and approximate diagnosis year in memory of a relative or friend you know who has passed ?

37 Replies

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  • Good morning; YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ; I do not want to start whinning but I am from CANADA and used to free health care, the big problem I find here in the USA is I am struggling to stay alive because when I had to close my company I lost my insurance, and I cannot get the ttetment my Neuro wants me to have and also I bring most of my drugs from Canada because they are cheaper. Sorry for the spelling but I am having a hard time.

    Regards;

    ERIC

  • Hang in there...be thinking about you ...

  • Not all options have to be expensive for Parkinson's. I am including 2, I could leave more, options for inexpensive ways to treat Parkinson's. The first if from Sao Paulo Brazil in which PD patients, as part of their treatment, quit eating red meat and started taking vitamin B2 3 times a day, every 8 hours, at 30 mg:

    vanguardneurologist.com/rib...

    Secondly, listen to the following interview on Parkinson's blog talk radio:

    blogtalkradio.com/parkinson...

    The drug is low dose Naltrexone, LDN, and it has to be made at a compounding pharmacy - it costs about 40 dollars a month. Since it has not been FDA approved for treating Parkinson's you will have to basically say to your doctor 'I will take it at my own risk' because it releases liability from the doctor. Lexi, the woman in the interview, states to compounding pharmacies and one in particular, Skip's in Boca Raton Florida will speak to your neurologist about the benefits of taking the drug. By the way, LDN has been approved to treat drug/alcohol addiction at doses of 50 milligrams a day. For PD the starting dose is 3 milligrams and eventually peaks at 4.5 milligrams. Listen to the interview and it is all spelled out there.

  • Thanks for the time and concern to send this info I will follow up today

    Regards

    ERIC

  • Best wishes.

    Rich

  • YES I AM IN THE UK

    AND HAVE PSP

    LOL JILL

    :-)

  • Of course...in the USA...

  • I would have no difficulty in participating in such a registration scheme. In fact I can't conceive of a reason why I would not want to. But is this scheme meant only for citizens of the USA?

  • I am so in. Keep us posted!

  • I'm with Pete here ie from UK & yes I'd have no problem.

    Re privacy in this age there is none. If any agency with the motivation wanted to compile such a register they could probably do it in less than a day.

    The bureaucracy surrounding 'privacy' is an illusion created to make the masses feel safe & to provide an army of techies with a very good standard of living.

  • The registry would be for everyone, but with a place to indicate if you were in the US or another country. I was told that each state in the US would have to approve the release of such information if they gathered statistics from medical records. This would be time consuming and difficult..A voluntary register would cut through the red tape.

  • Absolutely. I'm in!!!

  • Yes I would

  • I'm in.....

  • Yes indeed!

  • Most definatley!

  • Another yes

  • Count me in.!

  • yes i will

  • Count me in. Im in scotland and the nhs have been appaling. X

  • me too, I do agree

    Freddy

  • Yes, I would participate, thanks for the information.

  • Yes i would participate. Sweden already has done this. They set up a national register last year.

  • Yes. I would participate.

  • I'd participate. Just let me know. I'd be more than wiiling.

  • gettome

    Count me in too. Just finished survey for a Parkinson "MY HEALTH" I assume that is what you originally asked 4 days ago.

  • gettome...I just received an invitation today from Health Unlocked to join in the beta test version of "My Health"( a program that tracks Parkinsons symptoms etc)

    This is NOT what I am referring to. The Parkinsons Registry would not ask for any personal information. It is meant to be a list of all those around the world who have Parkinsons, with a separate list In tribute to those who have passed with PD

  • I am still interested. Anything I can do??

  • Count me in ...

  • about 7 years ago I went to my family doctor for a routine yearly check-up. He called me 4 days later and said "Everything's fine." I breathed a sigh of relief and asked him what was my PSA. He looked at my chart and said, "i guess i forgot to mark it down to take it." Now, I was 60 at the time. Prime prostate cancer time. The following year I made sure he marked down PSA. When the results came back I had a PSA of almost 4.0 and a Gleeson scale of 5.5. So, my guess is that he missed it. Perhaps if he would have seen those numbers the year before I wouldn't have had that miserble year. I googled prostate and Parkinsons, and sure enough there is a link from one to the other.

    what would you do?

  • Count me in the registry…and my dad, who died this month at 88, with PD a contributing factor.

  • I am all for it! I wonder if we could set up a facebook registry. Once done, we could spread the word to all groups and people. Like to hear your thoughts.

  • Yes! Count me in.

  • Me too!

  • I take your comment, “I would really like your thoughts on this.“ to be sincere, so at the risk of offending the 33 supporters (if my count is correct) of your proposal which, I believe, is to create a PD registry to support the Parkinsons Action Network in their “ work to bring all the Parkinsons network organizations together before congress to pass legislation for funding for Parkinsons research, medical benefits etc “ allow me to be the first to disagree. Certainly, there are well meaning folks at Parkinsons Action Network , and elsewhere, and I applaud any effort to establish a voluntary PD registry, but I object to it being used to support any effort to influence “congress to pass legislation for funding for Parkinsons research, medical benefits etc.“ Those of you from Canada (ERIC: “I am from CANADA and used to free health care,“)

    Australia, UK, etc., where you are accustomed to “free” health care, may be forgiven for not understanding that our US Constitution does not authorize any federal government expenditures for PD research (or any other medical research); but US Citizens , including our 44th President, should know better. Certainly, our 14th President ( Franklin Pierce) did know beter when he wrote: “I readily and, I trust, feelingly acknowledge the duty incumbent on us all . . to provide for those who, in the mysterious order of Providence, are subject to want and to disease of body or mind; but I cannot find any authority in the Constitution for making the Federal Government the great almoner of public charity throughout the United States .“ In other words, as caring human beings we should provide for the less fortunate (and Americans ARE the most charitable people in the world), but not with taxpayer money – there is “no authority” for this in the Constitution.

    Espo. Dx PD 2006

  • Yes, I would be willing!! :)

  • I am feeling very guilty about my Parkinson's Disease because I can't afford to play someone to come in and do rhings for me that I can no longer do for myself, thus it is left to my family to care for me, and they just do not have the time in their busy lives. I am constantly calling one of them to beg for a ride some place or another, or to make me or take me to lunch because I cannot even get the lid off of a tuna fish can or boil an egg or put mayo on a slice of bread for a sandwich. This may not seem like much, but when I have to go without lunch because no one can get away, it is big deal. I find myself filling up on junk food like candy or potato chips because it is easy and I don't have to bother anyone. What do others do who are in my positiion? It isn't life-threatening, but it is a problelm.

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