Did anyone read the article in the Mail on Sunday's "You" magazine yesterday, by Judith Magill, detailing her husband's rapid decline after four years with PD. It was very depressing, to say the least, especially I would imagine to someone newly diagnosed.

I think it's pretty irrespondible to print an article like that without making it clear that all cases of PD are unique, and will quite likely not take that route.

After having a year to try and get our heads round my husband's diagnosis, reading something like this can really knock you for six.

Hope it hasn't affected anyone else that badly.

Budgies -

I didn't see this article, but I know exactly how you feel (insofar as that is possible) - things like that used to totally crush me. Now, I assume the poor person has some disease other than the one I have. Maybe atypical parkinson's. Maybe not parkinson's at all. Maybe some complication - menningitis or something occurred and overwhelmed the neurological system. Maybe they were assaulted by some environmental toxin on an ongoing basis. Maybe I am just trying to defend myself against an essentially unknowable course of illness, but, through this board and my local support group I now know of many good people who do quite well with this disease for a long time. It is believed that one local gentleman may have had it for 50 years and yet he continued to cook, paint, travel and live at home with his wife for over 40 of those years - and worked for many of them.

One thing I've started doing - I print out entries from this board, articles, etc. that speak hopefully of the future of Parkinson's and how we can help ourselves - new treatments, vitamins, exercise, whatever appeals to me and keep them in a notebook. If I start feeling overwhelmed, I look in my notebook and ask myself if I am really doing all I can for my quality of life and healthy and that of others with Parkinson's - the answer is always no, so then I pick something new to try and immediately feel better for being less the victim. A lot of it is about finding ways of coping that are meaningful to you! Good luck.

Sasha

Something that we should all be aware of is that rapid progression is atypical and may have a cause that is tragicly simple - infections elsewhere in the body. Urinary tract infections, gum disease, abscessed teeth, all can accelerate progression by stimulating the brain's defenders. These types of infection can literally wall themselves off and persist for years. On a similar note, unhealthy microflora in the gut can produce a similar effect. The GI tract is in direct contact with the world so it should be no surprise that it has enough detectors to rival the Korean DMZ. Throw in constipation and the importance of the microflora becomes clear.

Rick's right! I believe that having Parkinson's lowers your body's tolerance of the problems he mentioned.

For example, since I have been working on my dental problems, my off time has increased considerably. (and I was even on antibiotic)
Peg

Thanks so much for your response, Sasha. This has made me feel much better about things.

Keep well, and kind regards.

Thanks to you too reverett for your good advice, and for responding to my post.

I'm still recovering from the "shock waves" of that biased and inconsiderate article, but things are more in perspective now.

All good wishes.

Budgies, I do not remember seeing your name before, if you are new to the forum a big welcome, if you have been a lurker thank you for coming into the light, this is a great place to be!

I tried to find the article you mentioned and could not find it online. It IS depressing to read of something like that, but it must be remembered that IPD is one of a spectrum of parkinsonian type disorders, and different people at different times use PD to describe almost anything in that spectrum. IT does sound as though what you mentioned is in all probability a parkinson's plus disorder, or possibly something like LBD which has similarities with them. At any rate it is atypical to progress that fast.

When I hear of people who are suffering from that kind of very fast progression it makes me a bit more determined to do what I can to move an understanding of PD forward, not in terms of medical definition, but what real people experience. It is my belief that when the mysteries of IPD are unravelled and understood treatments for the other disorders on the parkinson's spectrum will rapidly follow. OR perhaps it is one of the other disorders that will provide the key, but either way it is the real people who need to be studied, with open minds, and fresh thinking.

The really depressing thing is that there have been very promising treatments that never made it past the post, and other treatments that are just a re-hash of old ones that do..........

Budgies - is this the same article, I took it from a Times link. It is very much from a caregivers point of view as are the comments. While all of it is from a very caring point of view, it would have been good to read that there was something pro-active that helped to keep the people with PD engaged. In this respect Sasha's post shows a great attitude to PD

http://www.timesonline.co.uk/tol/lif...cle6840326.ece

Peg, perhaps it was the antibiotics that helped, there is a lot to say that infections create inflamation in the brain, it is well recognised in MS.

Lindy

Duh! I had forgotten about antibiotics and PD not mixing well for many. Although it's unique to each PWP, antibiotics (for some reason) always seem to exacerbate my symptoms while taking them, but when I stop after a round of say amoxicillin, my symptoms greatly improve. This is no doubt due to the lessening of inflammation.

Peg

peg-

Actually, there is reason to think that antibiotics help symptoms. Ron's tooth, of course. And there was an anecdote of a fellow who reported complete remission of symptoms during a course of antibiotics for a similar tooth problem. It may depend on the antibiotic. One called minocycline(sp?) is used experimentally lower brain inflammation. It is a tetracycline relative. Another possibility is that you may have an H. pylori infection and the antibiotics increase its inflammatory effects.

Something I just thought of- the anecdote of the fellow I mentioned above referred to a specific antibiotic. I checked the PLM database and found one person who hd used the same antibiotic for decades as prophylaxis for a heart valve problem. Hers was an extremely mild case of PD and showed no progression at all. In both cases the antibiotic was "Penicillin VK". The K stands for potassium which is part of the formulation!

I think most people do feel rotten while they are taking antibiotics, and all the bad stuff feels worse, but as Peg says, afterwards it is better. Rick, agree over penicillin based stuff. Look out for some info on a type of infection which can cause brain symptoms - I'll PM you when I remember the name of it, duh

Lindy