Looking for information about Parkinson's Disease

[Kacey]

My maternal grandmother was diagnosed with Parkinson's Disease several years before she died of emphysema at 80.

This morning, my mother called me and told me that the doctor has confirmed that she also has Parkinson's Disease (she's 63). I called my aunt because I had just sent her an email asking to see if she could talk my mother into going to a doctor while she is visiting this weekend; she had a visible tremor the last time I saw her in December, and she wouldn't listen to me when I asked her to go to a doctor. My aunt told me that my uncle (my mother's younger brother - he's 60) is also showing signs of a tremor when he is concentrating deeply on something, but that he hasn't noticed it yet.

Because of this, I am concerned that I might be at higher risk for Parkinson's Disease, and would like to find additional information about what to avoid and what to do as ways to reduce my potential risk - there's no indication of this illness on my father's side of the family, nor in my maternal grandfather, but if my maternal grandmother passed it on to both of her children, then I am concerned for myself.

Other than the National Parkinson Foundation, does anyone have any good, reliable sources of information?

 

[dubljay]

Hey Kacey I just did a few web searches and came up with this. Dont know if it helps or not...

http://www.webmd.com/parkinsons-disease/guide/Parkinsons-Disease-Topic-Overview

http://www.webmd.com/parkinsons-disease/guide/Parkinsons-Disease-Home-Treatment

http://www.parkinson.org/NETCOMMUNITY/Page.aspx?&pid=201&srcid=-2

http://en.wikipedia.org/wiki/Parkinson's_disease


When I was just skimming through the first article the one thing that caught my attention is that there is no lab test (i.e. do blood work) that can diagnose Parkinson's Disease.

I do remember a couple years ago (maybe it was about the same time Micheal J Fox announced his diagnosis with PD so it could have been longer) there was some news on how they were making progress on helping those with PD.

It is very scarry and I with both you and your family long, happy healthy lives.

-Josh

 

[Kacey]

Hey Kacey I just did a few web searches and came up with this. Dont know if it helps or not...

http://www.webmd.com/parkinsons-disease/guide/Parkinsons-Disease-Topic-Overview

http://www.webmd.com/parkinsons-disease/guide/Parkinsons-Disease-Home-Treatment

http://www.parkinson.org/NETCOMMUNITY/Page.aspx?&pid=201&srcid=-2

http://en.wikipedia.org/wiki/Parkinson's_disease


When I was just skimming through the first article the one thing that caught my attention is that there is no lab test (i.e. do blood work) that can diagnose Parkinson's Disease.

I do remember a couple years ago (maybe it was about the same time Micheal J Fox announced his diagnosis with PD so it could have been longer) there was some news on how they were making progress on helping those with PD.

It is very scarry and I with both you and your family long, happy healthy lives.

-Josh

Thanks - I saw that part about diagnosing by ruling everything else out too... I am hoping someone has some sources that they know are valid; the internet is great, but I don't always believe everthing I read on it, either - although WebMD is usually pretty reliable.

 

[tellner]

This isn't a bad place to start.

 

[Kacey]

This isn't a bad place to start.

Thanks... that actually is where I started!

 

[stickarts]

Kacey,

My dad has Parkinsons, diagnosed about 5 years ago, and that started with a tremor also. It has slowly progressed but the meds seem to be helping to hold it off.

Can you go to a specialist in your area just as kind of a consultation, brain picking, type of session? You can ask about your risks, etc...
He / she can also maybe steer you toward even more info?

May be well worth it even if it costs you a bit of money?

 

[Kacey]

Kacey,

My dad has Parkinsons, diagnosed about 5 years ago, and that started with a tremor also. It has slowly progressed but the meds seem to be helping to hold it off.

Can you go to a specialist in your area just as kind of a consultation, brain picking, type of session? You can ask about your risks, etc...
He / she can also maybe steer you toward even more info?

May be well worth it even if it costs you a bit of money?

Thanks - I have my annual exam scheduled in late July (it can be really hard to get non-emergency appointments sometimes) and I certainly plan to talk to my doctor about it then - given my insurance, she'd have to give me a referral - but with no known test other than ruling out everything else, I'm not sure what going to a doctor would do.

I have heard that caffeine intake is correlated with a reduced risk... but I'm hoping to find out more. My next-door neighbor's mother died of Parkinson's last spring, and she told me that getting enough sleep and regular exercise (both of which I do) are also preventative. However, she doesn't have a computer at home, and the school district she works for had some problems with staff and 'net sites, so they really frown on using the 'net for anything personal, so she didn't have any on-line resources, although she did send me to the same organization tellner listed.

 

[stickarts]

Thanks - I have my annual exam scheduled in late July (it can be really hard to get non-emergency appointments sometimes) and I certainly plan to talk to my doctor about it then - given my insurance, she'd have to give me a referral - but with no known test other than ruling out everything else, I'm not sure what going to a doctor would do.

I have heard that caffeine intake is correlated with a reduced risk... but I'm hoping to find out more. My next-door neighbor's mother died of Parkinson's last spring, and she told me that getting enough sleep and regular exercise (both of which I do) are also preventative. However, she doesn't have a computer at home, and the school district she works for had some problems with staff and 'net sites, so they really frown on using the 'net for anything personal, so she didn't have any on-line resources, although she did send me to the same organization tellner listed.

Talking to a specialist may help give you the best info available, let you know what your risks really are, be a credible source that can point you in the right direction to the best info / resources, and maybe just help set your mind at ease a bit knowing that you will be doing everything that you can.

Sounds like you have a good approach though by starting your search and by consulting with your physician, especially given the referral situation.

I had just thought of the specialist because diabetes has run in my family and the specialist that i spoke to knew so much more than the general practicioner that it was just amazing.

Good luck with this Kacey. I understand the concerns firsthand.

 

[Kacey]

Talking to a specialist may help give you the best info available, let you know what your risks really are, be a credible source that can point you in the right direction to the best info / resources, and maybe just help set your mind at ease a bit knowing that you will be doing everything that you can.

Sounds like you have a good approach though by starting your search and by consulting with your physician, especially given the referral situation.

I had just thought of the specialist because diabetes has run in my family and the specialist that i spoke to knew so much more than the general practicioner that it was just amazing.

Good luck with this Kacey. I understand the concerns firsthand.

Thanks much!

 

[blackxpress]

My dad died from it. He was treated for PD for several years before they upgraded his diagnosis to PSP (Progressive Supranuclear Palsy), nicknamed Parkinson's Syndrome Plus. He was sick for 12 years before he finally died so we got quite an education in Parkinson's and related neurological disorders. As far as anyone knows at this point, PD is not genetic but who knows, really? It could be that we're more sensitive to it because of my Dad but it seems like there's a whole lot more Parkinson's and MS than there used to be years ago. I haven't seen any studies on that issue but it seems like it used to be fairly rare and nowadays I know lots of people who have it. My Mom thinks the main culprit is environmental poisoning but that's only a hunch on her part. My Dad was big into gardening and was exposed to a lot of different pesticides over the years. When he first started displaying symptoms he had spent the previous year supervising the buildout of a new skyscraper in Atlanta. Mom wonders if all the dust, carpet glue fumes, paint fumes, etc. that he was breathing in might have played a part. Bottom line, nobody knows. I wouldn't be surprised if she's right though. Between the chemicals in our air and the heavy metals in our drinking water it's a wonder any of us are still kickin'

 

[RBaddorf]

http://www.merck.com/mmpe/sec16/ch221/ch221g.html

Bear in mind that Merck is a drug company, so they will say drugs are the treatment.

I would also look into acupuncture and herbs.
http://www.pdrecovery.org/

Interesting that they will no longer treat people that were on anti-parkinson's drugs for more than 3 weeks. Seems that alot of "Parkinson's" is caused by anti ADD, anti depresant and anti Parkinson's drugs.

 

[tellner]

Herbs are drugs. They're just drugs that you get more directly from plants. Acupuncture may well help with the symptoms, but please don't fall into the trap (I've known many who have) of believing that it can effect a miraculous cure. It simply won't.

There are some promising drug therapies. For extreme cases there are brain implants that can sometimes do amazing things. None of these is guaranteed. It's best, as always, to get good professional advice from a neurologist who sees a lot of this and is up to date on current treatments.

 

[exile]

One other thing, Kacey—some of the posts so far have been a little scary, implying that Parkinson's is a terminal illness; but this is, from what I've read on neurological disorders, not true, as vs. ALS, which is terminal. My father-in-law had ALS, and I did a bunch of reading and research on it and possibly related neuromuscular conditions. Apparently, most of the grave health problems associated with Parkinson's come from falling and loss of motor control, and there may be some implication of the immune system, but that's often the case with a chronic ailment.

Bill Reid, one of the premier Native artists on the B.C. coast in the last half century, was both carving and directing the creation of large-scale projects in his workshop well into his seventies, a quarter of a century after he was diagnosed with Parkinson's....