February 22, 1999 01:47 PM
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HAPS Happenings HOUSTON AREA PARKINSON SOCIETY 1475 W. GRAY, SUITE 175 HOUSTON, TX 77019 (713) 626-7114 FAX (713) 942-7349 January 1999 VOL.XXV, NO.1
1998 in Review The search for a cure took another great stride forward as the Omnibus bill for the 1999 Federal Budget included the necessary language to recognize the Morris K. Udall Parkinson Research and education act of 1997. Parkinson’s people and groups from all over the country united in a grass roots effort that succeeded in almost textbook fashion. More than 5,000 petitions were delivered to Texas lawmakers as part of this effort. Sadly Mo Udall passed away at the age of 76, on Dec 13, 1998 after his long fight with PD. Please keep the Udall family in your prayers.As I reflect on this past year, I see so much progress being made for the Parkinson cause, yet I wonder, what could I do to make it happen faster. New drugs to help PD symptoms were introduced with some wonderful results for some people. New surgical procedures including deep brain stimulation, human and pig fetal cells were successfully implanted in PD research patients. Neurotropic growth factors were administered to PD research patients. A Parkinson’s gene was discovered on chromosome 4 in some families. Public awareness of Parkinson’s disease and its devastating consequences was increased many fold. In Houston, hundreds of public service announcements were aired on several local TV stations. This was the result of a joint project between HAPS and the PFHC. Talk shows across the country were carrying specials on Parkinson’s Disease. We had our own one-hour show on ABC with Debra Duncan on December 4. Another celebrity, Michael J. Fox announced his seven-year battle with PD. This was carried in every newspaper and by all TV stations across the country. The president talked about PD in his state of the union message. Six year old Abbey Wood of Grand Ridge Illinois raised $150 selling cookies and lemonade for her grandfather who has PD. Her story is now being broadcast by The American Parkinson’s Disease Association in a public service announcement. All this media attention is attracting the much needed funding as the search for the cure moves out of first gear. Houston City Councilman Chris Bell celebrated his 39th birthday by honoring his mother who has suffered from PD since 1989. Attendees at the party contributed more than $15,000 for Parkinson’s research. The Parkinson’s Action Network (PAN) had its most successful fund raiser as Christopher Reeves (Superman) addressed their guests. The National Parkinson’s Foundation is now contributing to the Parkinson research center at the National Institute of Health. We at HAPS contributed $25,000 to assist a researcher at Baylor College of Medicine. Our therapy and support groups continue to serve the community by assisting with quality of life issues while the search for a cure goes on. 1999 Activities and Fund Raisers 1999 will be one of the most active years that Houston has ever seen in the Parkinson’s community. Please mark your calendars and call The HAPS office for more information. The Methodist Houston Marathon January 17 – At last year’s Methodist Houston Marathon we placed 8th in our fund raising efforts. Our goal this year is to be #1. Aubrey Calvin a fellow PWP is chairing this event for HAPS. If you can walk, run, ride a wheelchair, push one, or know somebody who can and will, call Anne and she will share the details. It’s a great opportunity for family and friends to help find the cure. Participation can be in the 5k race or the marathon itself. If you just want to come and watch, call Anne and find out where our gang will be. Parkinson’s Research Campaign and Gala March 25 – The search for a cure in Houston will move out of first gear. President and Mrs. George Bush will attend as honorees and Mr. and Mrs. Roy Cullen will be Honorary Chairs of this spectacular fund raising effort. Our goal is to raise more than $1 million dollars. The event will be held at the Hyatt Regency Downtown. Tables of ten are available beginning at $2,500. Other special guests and celebrities have been invited to attend. The funds raised during this project will go to the Parkinson’s Disease and Related Movement Disorders Clinic at Baylor College of Medicine. Parkinson’s Powers Across America Symposium and Bikathon April 10 – April is Parkinson’s awareness month. A group of bicyclists will be on a cross-country trip that will begin in California in March, circle the US and end in California in September. The Southern tier will reach Houston on April 10. Together with the Parkinson’s Disease Foundation (PDF), the Parkinson Institute, and others, we will celebrate their gift of love and dedication during our annual symposium. Two of the riders Donna Koss and Wallace Teal have recently lost loved one’s to Parkinson’s – a father and a wife. Their goal is to raise funds for research and to increase the public’s awareness about Parkinson’s disease. We have reserved the entire Metropolitan Multi-service Center for this special family event. To learn about the latest developments in Parkinson’s care and treatments and to honor the cyclists, bring the family to this very special event. Sponsors for the riders are needed for the southern tier. An RV and driver to accompany them as they travel from California to Florida is desperately needed. Call Anne if you have any suggestions. Scarecrows and Pumpkins October 30-31 – This special family event is now in the planning stages. It will be held at the Garden in the Heights. While planning has just begun, we expect to have a haunted house, a medley of food booths, an auction and lots more. We anticipate an adult only event on Saturday night and a family event with children’s activities on Sunday. Funds from this event will support HAPS community programs and research grants. As you can see we have a lot planned. It is my hope that we can create an atmosphere this year that brings friends an family together as we struggle to improve the quality of life for each and every PWP and their caregivers while we continue the search for a cure. Best wishes and a Happy New Year to all, Bob Martone - President
"Ask Dr. Jankovic" Director, Parkinson's Disease Center and Movement Disorders Clinic, Department of Neurology, Baylor College of Medicine Q: How is young-onset Parkinson's disease different from the late-onset disease? A: In view of the recent publicity stimulated by the revelation by Michael J. Fox about his Parkinson's disease (PD), it is appropriate to review the topic of PD starting at a young age. It is now well recognized that PD is not a uniform disorder, but that it consists of various subtypes. PD can be subdivided into different clinical categories according to the predominant clinical presentation, such as the tremor-dominant type versus the postural-instability-gait-difficulty (PIGD) type. PD can be also subdivided according to the age at onset into 1) juvenile PD or JPD (onset before age 20), 2) young-onset PD or YPD (onset between 20 and 40), and 3) late-onset PD or LPD (onset after age 40). This subdivision, though arbitrary, is partly supported by pathological studies which show atypical features in JPD, such as paucity or absence of Lewy bodies, the pathological hallmark of PD. This suggests that JPD represents a separate disease entity from YPD and LPD. The clinical differences between the three types of PD have been attributed to an age-related phenomenon reflecting variable response of the maturing brain to the same underlying disease process. The cause of JPD, however, appears to be different in some cases. For example, one type of JPD has been recently found to be inherited as an autosomal recessive (requiring a genetic contribution from both parents) disorder with mutation in a gene called parkin on chromosome 6. Several studies have attempted to characterize patients with YPD, but no consistent pattern has emerged. Dystonia, involuntary muscle spasms and limb postures, seems to be more frequent in YPD as compared to LPD. YPD patients seem to have more rigidity (stiffness of muscles) and less tremor and gait disturbances at onset and they seem to have a slower rate of disease progression and therefore more benign prognosis compared to LPD. The preponderance of evidence favors the view that YPD patients have a better response to levodopa but develop abnormal involuntary movements (dyskinesias) and motor fluctuations earlier in the course of levodopa treatment, as compared to LPD patients. These differences in characteristics of the two types of PD, however, have not been universally accepted. In order to determine whether age at onset is a predictor of the future course and response to levodopa we studied 48 patients in the Parkinson's Disease Center, Baylor College of Medicine with YPD and compared them to 123 LPD patients. Using sophisticated statistical analysis we examined the relationship of severity of symptoms and duration of disease. YPD patients presented more frequently with rigidity while LPD presented more frequently with postural instability and gait difficulty (PIGD); there was no difference in the occurrence of tremor at onset. We confirmed that YPD patients responded to levodopa better but were more likely to develop dyskinesias and "wearing off" effect. Although depression scores were not significantly different between the two groups, LPD patients seem to have more impaired mentation than the YPD group. There was no difference in family history of PD between the two groups. The data suggest that while YPD and LPD have overlapping clinical features, the YPD patients have a more favorable long-term prognosis and better response to levodopa, but they are more likely to develop levodopa induced complications. This study, to be soon submitted for publication, confirms our previous study which showed that presentation at young age and with tremor indicates a more favorable prognosis than onset at a later age with gait and balance difficulties. |
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