Download this newsletter in PDF format: Volume 1.1 (Now Available!)
Download this newsletter in Doc format: Volume 1.1 (Now Available!)
SPRING-SUMMER 2004
VOL. 1, NO. 1
The Beginnings
How did this support/education group get started?
1 + 1 = 2 + 1 = A Group
In the fall of 2002, the wives of two distant cousins who have HD met for lunch occasionally to share their experiences. The wife of another HD cousin soon joined them.
It wasn’t long before the idea of a group was born. From the very beginning, the small group had big ambitions.
They wanted to provide opportunities for families affected by HD to get together, to share experiences, to socialize, and to learn about resources in the community and progress being made in HD research.
They realized the need to emphasize education…for themselves, the community and local health care professionals.
The first official meeting was held in May of 2003 with fifteen in attendance. The guest facilitator was Taylor Butler, LCSW, from Emory University’s HDSA Center of Excellence and Wesley Woods Health Center in Atlanta, Georgia.
“Last Tuesday Meetings”
At Candler’s Heart & Lung Building next to the Main Entrance
Meetings are held on the last Tuesday of the month except for special programs. Programs vary …one month we may have a speaker, the next a video. We may break into two groups…one for caregivers and one for HD persons. HD info is available at all meetings. Refreshments are served. Meetings start at 6:00 p.m.
Spring/Summer Meeting
March 30 (Dinner Out)
April 27
May 18 (Special Program)
June 29
July 27
August 31
Candler Hospital
Heart & Lung Building
2nd Floor, Room 2
5353 Reynolds St. (at DeRenne)
Savannah, GA
For more information contact
Sandra Freyermuth
912-964-0455
sandrasfrey@aol.com
Nutrition for HD Persons
Judy Macolly, MS, Licensed Dietician, speaker for September 2003 meeting.
Judy Macolly shared with our group suggestions for improved nutrition in HD persons…from simple suggestions such as using bigger plates to make portions look smaller…to handing out high calorie recipes for easy-to-swallow foods.
With over twenty years experience, Judy has taught college level nutrition classes, consulted with groups such as the Neurological Rehabilitation Center, and is a past president of the GA Nutrition Council. She is now in private practice and available for consultation.
Pros and cons of supplements – Creatine, Choline, Choline Acetylase, Melatonin, Coenzyne Q10 and Vitamin E – were reviewed. Judy discussed why certain formulations might be better than others and sample bottles from the Brighter Day Natural Foods store were displayed.
As an adjunct to the meeting, Ann Gaba, MS, RD, EdM, and author of “Nutrition and Huntington’s Disease” published by the HDSA, offered answers to many of our questions by email.
Weight loss, according to Ann, is an important indicator of nutritional status, and almost always indicates inadequate intake. Some issues may be depression, eating or swallowing problems, or the need for a g-tube for additional nutritional support.
(Handouts are still available.)
Disclaimer: In articles the mention of services or products are not an endorsement. Opinions are not necessarily those of the Lowcountry’ s HD Support/Education Group. We recommend that any change in services or treatment for HD is made only with the approval of an individual’s physician.
Huntington’s Disease May Awareness Month Speakers<
Ruth Abramson, PhD, FACMG, Professor and Director of the HD Test and Clinical Services Center in Columbia, SC, associated with the University of South Carolina.
The 14-year-old HD Clinic is overseen by Dr. Ruth Abramson, a board certified geneticist. It has a neurologist, a speech languages pathologist, and access to psychiatry at every Thursday’s clinic.
There is a nursing home unit for HD persons within the Department of Mental Health. It has 15 beds and a waiting list.
Dr. Ruth was involved in the second draft of the Presymtomatic Testing Guidelines for the HDSA. The clinic has completed research in HD in association with the Boston group, and they are currently involved in issues concerning communication in HD.
Dr. Ruth will share with us the wisdom of her many years of HD experience.
John Morgan, MD, PhD, associated with the HD Clinic at the Medical College of Georgia in Augusta, GA.
A new multidisciplinary HD clinic is being established at MCG in Augusta, offering an HD resource closer to home for Lowcountry families.
Dr. Morgan is an enthusiastic supporter of HD and Parkinson’s families. Prior to moving to Augusta, he was associated with the University of Virginia and their Neurology Department that included the HDSA Center of Excellence.
A prolific speaker, published author, and researcher, Dr. Morgan’s timely presentation is a wonderful opportunity for HD families to learn more about HD.
Education Update: Effingham Hospital Journal Club Luncheon
William Garrett, M.D., presents program on “Movement Disorders” On February 3, 2004, Dr. Garrett, a neurologist with the Neurological Institute of Savannah, P.C., gave a video presentation on movement disorders with special emphasis on Huntington’s Disease and Parkinson’s Disease at Effingham Hospital in Springfield, Georgia.
Approximately 25 people attended, including Effingham physicians and hospital staff. Handouts were given with information about the HDSA Centers of Excellence, the Physician’s Guide to the Management of Huntington’s Disease, and literature from the Movement Disorder Clinic at St. Joseph’s/Candler hospital.
The video contained many examples of patients with Huntington’s Disease that Dr. Garrett had encountered while associated with the HDSA Center of Excellence at the University of Virginia. The characteristics of chorea experienced in HD were compared to other movement disorders.
GOOD CONTACTS TO HAVE:
National HDSA Mailing List
1-800-345-HDSA
Georgia Chapter Mailing List
770-279-9207
Emory’s Center of Excellence
Taylor Butler, LCSW
404-728-6822
Joan Harrison, GNP
404-728-6364
Appointments
404-728-4957
Education Update: Effingham Hospital Journal Club Luncheon
William Garrett, M.D., presents program on “Movement Disorders”
On February 3, 2004, Dr. Garrett, a neurologist with the Neurological Institute of Savannah, P.C., gave a video presentation on movement disorders with special emphasis on Huntington’s Disease and Parkinson’s Disease at Effingham Hospital in Springfield, Georgia.
Approximately 25 people attended, including Effingham physicians and hospital staff. Handouts were given with information about the HDSA Centers of Excellence, the Physician’s Guide to the Management of Huntington’s Disease, and literature from the Movement Disorder Clinic at St. Joseph’s/Candler hospital.
The video contained many examples of patients with Huntington’s Disease that Dr. Garrett had encountered while associated with the HDSA Center of Excellence at the University of Virginia. The characteristics of chorea experienced in HD were compared to other movement disorders.
GOOD CONTACTS TO HAVE:
National HDSA Mailing List
1-800-345-HDSA
Georgia Chapter Mailing List
770-279-9207
Celebration of Hope Dinner
Savannah Trip Donated For Silent Auction
In appreciation for the help extended from the HDSA Center of Excellence at Emory University in Atlanta to help kick-off our group, a trip to Savannah was donated for their Celebration of Hope Dinner on October 3, 2003.
The following businesses contributed for which we are thankful and invite your patronage:
The Lady and Sons
Massetti’s
Huey’s on the River
George’s on Tybee
Savannah Candy Kitchen
Friedman’s Fine Art
Colony Bay Florist
Captain Mike’s Dolphin Tour
Gray Line Red Trolley Tours
The Savannah College of Art & Design
Guest House
Savannah Chamber of Commerce
A special thank you to the Holiday Inn Express in Port Wentworth at I-95 for providing rooms to out-of-town medical personnel attending our meetings.
Donations received for our group:
Walt’s Furniture Store
In memory of Jimmy Arnsdorff:
Linwood & Nadine Seckinger
Allen & Catherine Webb
Libby Heidt
Monk & Bernice Jaudon
Hope Circle-Bethel Lutheran Church
H.W. & Le Ellen Hanberry
Allen, Bonnie & David Gnann
Barbara & Eddie Heath
Willie Tebeau
In memory of Marjorie Burry:
Libby Heidt
Huntington’s Disease May 18th Speaker’s Program
Dr. Ruth Abramson, Professor andHD Clinic Director associated with USC
Dr. John Morgan, Assistant Professor at the Medical College of Georgia
WHAT IS HD? HD RESEARCH. Q & A SESSION including
Dr. William Garrett, Neurological Institute of Savannah, P.C.
Candler Hospital
Heart & Lung Building
2nd Floor, Room 2
5353 Reynolds St. (at DeRenne)
Savannah, GA
6:00 p.m.
(Free light buffet dinner included.)
For more information contact: Sandra Freyermuth, 912-964-0455, sandrasfrey@aol.com
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