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Topic Non-Motor, Non-Dopaminergic Features-continuing education for neurologists Go to previous topic Go to next topic Go to higher level

By Reflection On 2010.06.21 21:50
Many on this forum have experienced that the non-motor, non-dopaminergic symptoms of PD can be the most disabling. Here's a free continuing education program for neurologists, which makes the same point. It also acknowledges that these symptoms, though very common, indeed, typical of PD, are far less treatable than the motor symptoms:

http://www.theparkinsonsgroup.com/webcasts.asp#webcast10part1
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The same professional education group has several other webcasts on PD that might be of interest: http://www.theparkinsonsgroup.com/pastwebcasts.
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The program refers to the 15 year follow up for the Sydney Multicenter Study - the abstract is at:http://www.ncbi.nlm.nih.gov/pubmed/15551331

The abstract of the twenty year followup: "The Sydney multicenter study of Parkinson's disease: the inevitability of dementia at 20 years" is at:
http://www.ncbi.nlm.nih.gov/pubmed/18307261
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I don't mean to offend any one with this, and each case is different - but having had to discover this information by myself, with no help at all from my husband's medical team, I hope to help other caregivers in understanding the path of this disease. Hope you might find this helpful.

By parkinit On 2010.06.27 22:31
Thank you for this information. The dementia is something we are facing right now. Our doctor admitted that 100% of PD patients WILL get dementia eventually - especially those with young-onset PD. He said, in fact, that young onset PD patients have much more difficult with the disease than those who get it an an older age. I'm watching the video now.

By LOHENGR1N On 2010.06.27 23:55
WOW! I guess I'm beating the odds huh? I'm in my 25th year living with Parkinson's and as far as I know I've still alive (we'd better hope so if you're reading this cause if I ain't you're in trouble too!). Also I seem to be of sound mind unless I'm so demented I've convinced myself and you that I am alive. I'm sorry if I have offended anyone by my posting this, however a study of 136 people with Parkinson's doesn't mean squat when compared to over 1 million PLWP in the U.S. alone at any given time. I'm sorry but studies like these and don't get me wrong I'm not for sugarcoating anything! When a study comes out like this stating after 20 years the inevitability of anything happening leaves one to wonder if the study was done at madame Zelda's crystal ball. I've seen these studies doing more harm than good over the years.

Also I've never heard a Doctor come out and state as a fact that any certain group will 100% develop anything. If anyone lives long enough they might with all probability develop Dementia. My G-d, this information sounds like a quarter of a century ago when My Neurologist gave me 15 to 20 years to live. Take care, best of luck and hang in there.

By karolinakitty On 2010.06.28 09:05
I know what you're saying Al.... i read all these articles and while they carry good info can be misleading. Since we've all come to the conclusion that not one PD patient is as the other, we have to live like there is no tomorrow.
With all the info out there and here it is great to be prepared and ready for battle. However, if we followed the studies, the stages and mortality rates, mine should be dead sometime next year. So we can either sit here and wait or live. when researching the Pd plus diseases. i found the life expectancy after diagnosis is about 3-5 years....devastating news to a newcomer BUT then as i got further into the research i found that most of the folks were above the age of 65. Well mines only 53 that's an extra 12 years in my math.

If i may be so bold, and i do not want to offend anyone, I apologize if i do ahead of time. but here are my thoughts.

Most of the statistics from what i have found have been on patients 65 - 70 or older, and this is where i may have to apologize, but traditional life expectancy is not much more than that. Now there are some folks that live a good long time. My guys grandmother just passed away last fall and she was 104. My gram at 85 and my mom at 75. My gram they had dead at 65 from diabetes, they actually sent her home to die and that was my first dealing with being a caregiver, i was still in high school. But she didn't die, she lived another 20 years. Bucked the odds, maybe, but i think it's just life.
Other then YOPD, most folks get PD at a later stage in life so naturally, in the greater scheme of things they have a shorter mortality rate.
We were just discussing this issue last week. And again I don't mean to offend anyone.
If someone is 35 to, say, 45, and they get PD, they still can lead a long life, they have to deal with the side effects of drugs a lot longer, they most likely have younger children and have all that to deal with. While the older patients have all the extra typical "old age" things to deal with, and most likely die to complications of all things then just the PD alone.
Dementia, it's a hard thing when you are only 50 and start losing your normal faculties. The daily struggles mine has just to make it through the day seem to be harder on him then they were on my mother when she had dementia. The slow progression of losing day to day tasks, when you are " in your prime" have a larger psychological effect then when you are 70 or older. In the world, you are supposed to be alert and functioning at 50, but starting to fade out at 70. That is what can be so tasking when out in public. He walks like an 80 year old, slow and methodic, has to have assistance by either a cane or shopping cart when at the store. He takes forever to make a decision on buying something as his mind works slower and the thought process takes longer. Store security usually ends up following us at times because he is so slow and methodical, plus the fact of his appearance being like that of a trucker or biker dude. He's tall and built, has tatooes, always wears a muscle or t-shirt soooo we always get the looks from them.
I digress ...... i prattled again.

By Michele On 2010.07.07 17:11
Reflection, Thanks for putting this on our forum. It took me a while to be able to watch the entire video. It was difficult to understand some of it as it is in medical-speak but I was able to follow it. It is upsetting to learn that they are not close to being able to treat non-motor symptoms from a PD perspective. My husband goes to many specialists (Neurologist, Urologist, Psychiatrist, Cardiologist) in addition to his primary doctor to treat his non-motor symptoms. He is lucky that his eye doctor is very familiar wity the impact of PD on eyesight. It is heartening that these doctors are starting to address these symptoms. Hopefully, Neurologists and other doctors will become aware that the non motor symptoms are, in fact, part of PD. It also helped me to understand the impact of Lewey Bodies. I will be interested to watch the next video in August on treatment.

By parkinit On 2010.07.08 23:51
Al - Thanks for the encouragement of YOU! You ARE beating many odds and seem (wink) to be of excellent sound mind. Thanks for that encouragement plus all the positive reinforcement you provide to this forum. You're truly a blessing.


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