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Dear Mary Ann The truth is that many doctors, including neurologists, are not familiar with YOPD. Even I was not aware of the unique problems of this subset of PD patients until recently. Most of my YOPD patients have lost their jobs before retirement. The most important lesson is that we have to be particularly sensitive to the special needs of YOPD patients, i.e. earlier age of brain surgery in order to save their careers. I have arranged for five PD patients for the brain surgery next year - all of them are YOPD, and two are still working. Today I finally successfully contacted the youngest YOPD patient in Malaysia. He was only 23 when he was diagnosed. Unfortunately, it is already quite late to help him - his father told me that he has been bedridden and lost his voice for some time - he is about 36 right now. The discovery of the YOPD has even changed my treatment approach and attitude. Nowadays when I give lecture on PD, I start by showing photographs of my YOPD patients with the caption "YOPD patients in Malaysia". Dr Chew > Date: Wed, 8 Jul 2009 08:48:36 -0400 > From: [log in to unmask] > Subject: Re: Young-Onset PD more common now > To: [log in to unmask] > > Dr. Chew, when my husband developed YOPD in 1980 at the age of 40, no one > seemed to understand the disorder. For a long time, Jamie felt very alone > in his illness and refused to go to support groups because Parkinson's > Disease was an 'old person's disease' and he couldn't/wouldn't identify with > that population. > > One of the blessings of this list was that we learned about Young Onset > Parkinson's Disease. When we confronted Jamie's neurologist about the > disorder, his only comment was, "There are lots of variations in Parkinson's > Disease." While that may be true, the YOPD has special challenges. A more > comforting physician could have offered Jamie some insight into what was > happening to him. My husband worried about keeping his job until the very > day he decided to retire at the age of 60 in 2000. So, for 20 years, he had > worried unnecessarily - poor guy. > --------- > God bless > Mary Ann (CG Jamie 68/28 with PD, died 11/20/07) > > www.bentwillowfarm.org > > > > > There is something interesting that I would like to share with everyone. > > > > I have been treating Parkinson's patients over the past ten years. Three > > years ago, I moved to my present hospital, and made two interesting > > discoveries about Parkinson's. > > > > Firstly, I began to notice the non-motor side of Parkinson's - depression, > > anxiety, hallucination, sleep disorders, etc. I supposed that since I work > > in a private hospital nowadays (and no longer teach medical students), I > > have more time to spend with my patients, and thus discover all the > > non-motor symptoms that my patients have. Previously, I had always focused > > only on the movement disorder (i.e. the motor symptoms of Parkinson's). > > > > Secondly, there is a dramatic increase in the percentage of young-onset > > Parkinson's in my clinic. I really can't explain this phenomenon. I have > > patients whose symptoms started as early as 26. I also realize that the > > young-onset Parkinson's patients are a special subset of Parkinson's > > patients which needs a rather different management approach - they are > > really special. > > > > The take home message is that we are always at a learning curve, > > especially when dealing with Parkinson's. > > > > Dr Chew, Kuala Lumpur. > > > >> Date: Tue, 7 Jul 2009 19:08:42 -0700 > >> From: [log in to unmask] > >> Subject: Young-Onset PD more common now > >> To: [log in to unmask] > >> > >> Doctors Diagnosing 'Young Onset' Parkinson's More Often > >> Token Creek Man Managing Symptoms > >> UPDATED: 10:13 am CDT July 7, 2009 > >> > >> MADISON, Wis. -- Since the high-profile diagnosis of actor Michael J. Fox > >> in > >> 1991 at age 30, Parkinson's disease has become well-known as a growing > >> and > >> even somewhat common disease. > >> > >> The disease, though, is not one confined to just the aging anymore. When > >> someone younger than 40 is diagnosed, it's considered "young onset" > >> Parkinson's disease. The brain degeneration that causes rigidity and > >> tremors > >> can be even more challenging mentally for a younger patient. > >> > >> However, as the disease becomes more common, some are taking it in > >> stride. > >> Bob Nasett was diagnosed 10 years ago at the age of 37, after watching > >> his > >> father die of Parkinson's. > >> > >> "When he got the disease, he was stiff and had slowness of movement," > >> said > >> Nasett. "Turning a screwdriver, I could tell that movement was difficult > >> for > >> me, and I was stiff getting out of chairs, and that's when I started to > >> realize that it was probably what I had." > >> Nasett's brother was diagnosed just a year later, at the age of 31. > >> They're > >> both one of a growing number being diagnosed at what seems like younger > >> and > >> younger ages. > >> > >> "I think we are seeing more and more because we're more aware of the > >> disorder," said Dr. Efrain Perez, director of the American Parkinson's > >> Disease Association. "In the old days, we started attributing that we > >> were > >> getting older, so it's OK to have a little problem with balance, it's OK > >> to > >> be slow, OK to be hunched. But nowadays, we realize that this is > >> different > >> manifestations." > >> > >> Get embed codeSave & ShareDr. Perez said stiffness or weakness in limbs > >> can > >> be the first signs of the brain function failing. The major effort, > >> especially in younger patients, is to manage the symptoms, because they > >> can > >> only be controlled for 25 to 30 years, said Perez. > >> "The whole idea is maintaining the patient's ability to function," said > >> Perez. "There's no cure for Parkinson's disease, so you basically treat > >> the > >> symptoms." > >> Nasett has been dealing with symptoms now for 10 years. Despite the > >> disease, > >> has managed to landscape the outside of his Token Creek home. > >> > >> "The medications I'm on now today, I feel like I have better control," > >> said > >> Nasett. "With my exercise program, and my desire to fight as long as I > >> can, > >> I think I have better control today than I had before." > >> > >> The treatment of Parkinson's now can include a number of different > >> medications that can control the symptoms. Some come with side-effects > >> and > >> can affect each patient differently. Dr. Perez said that exercise is also > >> proving to help drastically with movement. Nasett is currently in a study > >> at > >> the University of Wisconsin dealing with how exercise can help control > >> motion. > >> > >> There is no cure, and there isn't a known cause for Parkinson's. Doctors > >> will diagnose 60,000 new cases this year alone -- most will be in people > >> over age 60. > >> > >> According to the American Parkinson Disease Association, roughly 20 > >> percent > >> of those diagnosed are under age 50, and half of those patients got that > >> diagnosis before age 40. > >> > >> Rayilyn Brown > >> Director AZNPF > >> Arizona Chapter National Parkinson Foundation > >> [log in to unmask] > >> > >> ---------------------------------------------------------------------- > >> To sign-off Parkinsn send a message to: > >> mailto:[log in to unmask] > >> In the body of the message put: signoff parkinsn > > > > _________________________________________________________________ > > More than messages–check out the rest of the Windows Live™. > > http://www.microsoft.com/windows/windowslive/ > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: > > mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn _________________________________________________________________ More than messages–check out the rest of the Windows Live™. http://www.microsoft.com/windows/windowslive/ ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn