[QUOTE=lindylanka;630467]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.........

Hi Lindy,

Many thanks for your kind response to my posting.

Unfortunately I was unable to connect to the link you sent, as when I clicked on it the usual "Error" page came up, so I can't tell you if that was the article, but I very much doubt it.

I AM new to this site, but will not be a stranger to it any more, as I'm sure to be needing support from now on, so many thanks for yours.

Kind regards.

Budgies it is a September 2009 article by the same author, in the Times, and it came up in a simple search, I copied and pasted the link so apologies if it does not work.

Glad you came here, and its nice you feel you might want to stay!

Lindy

I think it probably is the same article.

Budgies, Lindy is right re. PD and PD Plus, idiopathic PD progresses at different rates but it is typically a far slower progression than the case described in the Times article. PD Plus conditions are very different and typically progress far more rapidly and are often unresponsive to ldopa.

I have been dx'ed 5 years and don't recognise myself as the person described in the article. At the moment we have no silver bullet but remaining positive, taking drugs on time, AVOIDING STRESS, and taking exercise will go a long way to helping your partner's PD.

I didn't even mention DBS as an option for the future if/when things get tough.

Articles like this can be shocking, my daughter was in a Biology class at school when they showed a film about PD. It was all doom and gloom and made no allowance that a 16 year old may be watching that has a relative with the condition.

I guess the more "dramatic" cases are more interesting, no one wants to read about my boring days, "Aftermathman gets up, eats, logs onto Braintalk, spreads words of wisdom, eats, watches TV, eats, goes for a drink, goes to bed and repeats the whole thing the next day". See, this would kill your readership circulation in no time.

Take care,
Neil.

my philosophy is hope for the best but be prepared for the worst. seems like the motto for us baby boomers.

Thanks so much for responding to my post Neil. Your comments are much appreciated, I can tell you.

Unfortunately, the three letters printed after the article seemed to suggest that the rate of progression described is quite "normal", which is even more upsetting.

That's why I'm grateful to all who responded to me here and I'm so pleased to hear other sides of the story.

Keep well.

Thanks for the welcome Lindy, and also for the link, which worked today - that's computers for you!!

So yes, I can confirm that it IS the same article as the one I was talking about, and again I appreciate your comments.

I was a bit dismayed to read the three letters commenting on the article, which seemed to suggest that this situation is far from rare, but I have to cling to the hope that these cases are far from "typical" - fingers crossed.

Keep well, and kind regards.

out of the three letters one guy had had PD over 30 years and the other two read quite positive to me. Remember you don't know the state of health or personal circumstances of these people and no disease is the same for everyone, if so no one would survive Cancer.

If this is worrying you talk to your Neuro, they will surely help you and try to stay positive. In the end you have no other choice.

Neil.

My introduction to PD was in 1980 when my mother-in-law was diagnosed. By the summer of 1984 she had lost her ability to walk, her ability to recognize anyone in her family and her ability to care for even her most basic functions and then she died.

Imagine my delight upon developing similar symptoms nearly 20 years later. I was so afraid of going through the same disintegration that she did that I did not seek confirmation of my self-diagnosis for several years.

When I related my story to my diagnosing MDS he said, in no uncertain terms, that she had not had PD. She possibly had MSA or PSP or some other such illness but not PD.

I was not convinced but after 10 years I am still up and going. I have stopped worrying about how soon I will be incapacitated. In fact, it has only been in the last year that I have consciously given up the denial and accepted that I really do have PD. I think the best thing you can do is let it go and go back to enjoying your life. You will progress how you progress. Worrying about it will only hasten it. Stay engaged and involve yourself in a project that you have passion for.

PD is sneaky and will grab you when you least expect it, but it is slow moving and things rarely happen in quick progressions so you have time to adjust between changes. Some days are good and some are bad but your own attitude will be more important than anything in determining how many of which you have.

Enjoy yourself as much as possible and don't forget to laugh.

Thank you so much for taking the time to respond to my post. It's actually my husband who has been diagnosed with PD, and we're both scared of the future, although I'm much more vocal about it!

It really doesn't do to read articles such as the one in question, because, as I'm beginning to realise, everyone is so very different.

I do appreciate your response very much though - it has helped greatly.

Kind regards.