While together I had the chance to ask Micheline about how it all started in France. I think she enjoyed reminiscing as much as I did learning about her pioneering work in her country.
In 1977 Dr. Henri Petit asked Micheline, now a retired biology and geology professor, to attend a meeting in Leiden, The Netherlands. Having never met anyone else at the meeting, she was apprehensive about entering the meeting room. She asked him, "Is this a lay meeting?"
The doors opened. As she walked in someone announced, "Here's France!"
Marjorie Guthrie rose from her chair and welcomed her with a big hug. "I was so shy," she recalled.
After the meeting she began to locate other French families touched by HD. She
September 2005: On the Road to Manchester
Serious consideration: Dr. Bernhard Landwehrmeyer of Germany and Max Klein of The Netherlands. (Walter Bucher Photo)
Serious socialization: Robyn Kapp (Australia), Christiane Lohkamp (Germany) and Dr. Landwehrmeyer. (Walter Bucher Photo)
Good friends: Drs. Nancy Wexler (Unites States) and Jeanne Bolt (Scotland. (Walter Bucher Photo)
Monday, September 5th, Labor Day 2005 in the United States, I left on a twelve day trip to England to attend the World Congress on Huntington's Disease, the Annual General Meeting of the HD Association (of England and Wales) and a meeting of the Euro-HD Network. My trip began as a volunteer for the HDA giving talks with their Regional Care Advisors (RCAs) at a hospital in London and care homes in Wales and outside Manchester.
Tuesday I was joined by three compadres. Rich Bonsignore from Long Island, New York; Dr. Bob Stein from Lancaster, Pennsylvania, and Sue Wright from London. Bob is a clinical psychologist in private practice who I've known for 20 years who consults at the Laurel Lake Huntington's Disease program. I've known Rich for several years from HDSA conventions, support group meetings and his activity among the network of friends touched by HD linked by the Internet.
Rich met Sue in cyberspace and then in person at an HD-related get together. Sue founded the Huntington's Disease Support Club on Yahoo! Bob met both Sue and Rich for the first time; and I was introduced to Sue for the first time at Northwick Park Hospital in Harrow, Middlesex, site of our HDA Education Day. The day was arranged and hosted by Delia Balan, North London RCA with support from her counterparts, Pat Morton and Pam Davies.
How do unfamiliar guys, natives of Brooklyn and The Bronx, recognize each other in busy Heathrow Airport: Wear New York Jets shirts! Left to right, Rich, Sue and Bob in Northwick Park.
Wednesday the Chesire Home in the village of Dol-y-Wern, Wales hosted us for a Study Day arranged with RCA Diane Lyes. What a great specialist care home for their residents with HD! We had about 50 folks in attendance, many of them directly touched by HD themselves. We met a gifted colleague, Occupational Therapist Kathryn Moore.
...Dol-y-wern Chesire Home.
Dr. Lori Quinn, on leave from the faculty of New York Medical College and the staff of the HD Center at Columbia in New York City, is living in London. Back in the States she is recognized as a leader in Physical Therapy for folks with HD. She's been actively involved in nursing homes, outpatient clinics and both graduate and postgraduate education for well over ten years. She has been a key player in the Summer Camp that the Columbia Clinic runs for folks with HD.
Lori and I secretly arranged for her to drop by our session at Northwick and surprise her old friend Rich. Lori cared for Rich's late wife Joanne in their home and at camp!
Rich, Jim and Lori at Northwick.
Intersection and village just outside...
Viewed from a bridge over this stream behind the Home, residents can cast a line for trout or use the bird hide on the left.
Family and nursing home carers alike swapped stories, questions and answers about the challenges that HD presents to them and those in their care.
I was beneficiary of the fine care and unparalleled hospitality of the HDA RCAs back in 1999. This trip was no different! Aware that we only had a few minutes to catch our train to Manchester, Di Lyes took us on a whirlwind tour of the Welsh countryside. Left, courtyard of Chirk Castle moments before the National Trust officers began their pursuit;
center, frightened sheep huddle as we fly by their pasture, and, right, Rich signals that he and Sue have survived the excessive speed and reckless abandon. Thanks, Diane! What a tour! Aarrgghh!
Wednesday night we arrive(safely!) at the Brittania Country House in Manchester. The pub in the lobby is filled with cricket fan(atics)s. We receive the first of our dozens of tutorials from our new mates on how cricket is played, "LBW," and the history of The Ashes. We are astonished that "games" last for days and teams break for lunch!
Thursday afternoon RCA Gillian Taylor has arranged an inservice discussion with the care staff of Fenton Mews Care Home in Rochdale. We're warmly greeted by Alison Ireson , the Home Manager, who tells us that their annual government inspection is in process. She pulls the staff together and we have a healthy discussion about the challenges of caring for folks with HD. I was coached through my talk with breaks for approval and reassurance that I was correct from a young resident with HD sitting next to me! My warm gratitude to him! The kitchen staff put on quiet a spread for us and the overall hospitality was excellent...in spite of it being an inspection day. In fact, one of the folks at the session introduced herself as one of the inspectors and passed on some kind words. As did I to her regarding the care and warmth given their residents with HD.
Friday afternoon family members began arriving at The Country House for the weekend HDA Annual General Meeting. What a great buzz of excitement in the hotel as friendships are renewed; hugs and warm greetings exchanged. Lots of folks with HD and those who accompany them talk about how comfortable it feels to be a part of this group. Fellow HUNT-DISser Pat Tims introduces herself!!!
Bob and I run a workshop with about 40 family carers about how routine and predictability helps folks with HD get through the day, especially their daily self-care activities.
The cricket legions in the hotel pub are joined by our HDA folks and the red shirt clad Manchester United fans, staying in the Brittania for tomorrow's intracity football match with Manchester City.
There is much goodwill that evening well into the wee hours. As several of the Britons asked about and discussed Marjorie and Woody Guthrie, I grabbed some transparencies from my room and we had an impromptu 2:00 a.m. discussion about Woody's experience with his HD as he described it in his published work. The very gracious Country House staff allowed us to "borrow" an overhead projector and found an extension cord on short notice. Special thanks to them! We were in good hands!
Total Caregiving Years Among Folks at the HDA AGM in Manchester,
September 10, 2005
2,166
Family carers garner a wealth of expertise in their years or decades of caregiving. Collectively they certainly have been my best teacher. To make this point I began my AGM talk by collecting folks' number of years as carers to their parents, selves, spouses and siblings. The RCA team totaled them up and, not surprisingly, there was more collective experience in the room than anywhere else on the planet that day!
Rich and Vivian
Explaining how to count and tally your total caregiving years.
Teaching the notion of "Huntington's Disguise."
The unique features of HD's movement disorder and cognitive disorders can create misimpressions about what folks are thinking and feeling. Changes in the muscle tone and weakness of facial muscles, the inability to maintain a smile during a conversation and postural changes can fool us into believing that one may be bored, disinterested or angry. If you have HD, family and friends may have difficulty recognizing when you're "smiling on the inside." We refer to this as "Huntington's Disguise." Fooled by these aspects of your HD, people may think that you are unhappy or uninterested, in effect creating a "Huntington's Delusion" on their part. Hopefully teaching people to recognize and to see through the disguise will help them better understand how you feel or what you're thinking.
They Won
The Ashes!!!
RCA Pam Davies and her HDA Volunteer husband Trevor rock on at the Banquet!
"What's that feller doing with an inflight oxygen mask on at the AGM Banquet?" you're wondering.
Remember this? "If you are travelling with a child or someone who requires assistance,place your mask on first, and then you may assist the other person! "
Rule #1 of caregiving: Take care of yourself first! The mask is a prop I use to make the point!
Left to right, that's Gill Taylor, Bob, Di Lyes, me and Delia Balan, the three RCAs who arranged our Study Days.
Also speaking were Dutch geneticist Dr. Aad Tibben and Drs. Anne Young from Massachusetts General Hospital and Martha Nance from Hennepin County Medical Center in Minnesota. The social highlight was the Saturday evening banquet! A splendid time was had by all! I got a chance to see some old friends like Tony Crawford, Sue Watkin and Gordon Doolin; and new
friends Alan and Linda Jones; and Hugh Marriott who wrote the Selfish Pig's Guide to Caring.
I'm convinced that everyone at that party... the people fighting HD, their partners in care, professionals and friends...transcended for those few hours the day-to-day concerns and challenges that HD throws your way. The spirit of friendship, goodwill, fun and shared experience was uplifting!
Sunday afternoon we're off to The Midland (left), a grand dame of a hotel in the center of Manchester for the World Congress on Huntington's Disease. What better venue for a scientific meeting in which to build a collaborative spirit than the hotel where (The Honorable C.S.) Rolls met (Sir Frederick Henry) Royce in 1904, one of the most legendary meetings of all time! This sculpture (right) at the entrance commemorates the meeting.
While waiting for the bus to the Congress Banquet at The Imperial War Museum/Manchester in the lobby, we had the pleasure of meeting Great Britain's 2004 Olympic bronze medalist in rowing, Sarah Winckless. What a charming young woman! World class in grace as well. And, she pointed out, she had just won a gold medal with her team in the 2005 World Rowing Championships in Japan! After a few moments of conversation and without asking, her medals were around my neck (right) and we were taking a picture together!!!
Elise and Sarah rowing it home!
Thanks, Sarah, for your generosity in sharing the excitement of your achievement with us!!! Keep on rowing!!!
After the banquet, Dr. Nancy Wexler wishes good night to Sue and Rich; and Asun.
Asuncion and Nancy.
Sure Steve Smith waited til 3 a.m. in the lobby lounge to uncork a handful of awesome tunes about living with HD and related topics. But, hey, it was worth the wait! Wow...wait til you hear 'em!
My old friend Steve Smith, a nursing instructor at the University of East Anglia, unveiled his new text on nursing folks with HD, Huntington's Disease: A Nursing Guide, that he recently published. For more information about it, click here,
Just one more picture together before we go: Marie McGill of the Scottish Huntington's Association, Bob, Dr. Martha Nance from Minnesota and me. Martha spoke at both the Congress and the HDA AGM about living with HD in a most comprehensice forward-looking way. Her sessions were very, very appreciated by families, allied health professionals and physicians alike.
Romeo and Juliet,
Royal Exchange Theatre.
Manchester City Hall
2005
World
Rowing
Championships
Gold Medal
Athens 2004
Olympic Bronze
with Elise
And around Bob's (USA) neck and Hans van der Leer's (Netherlands) neck and Asuncion Martinez' (Spain) neck and around Jan's (Scotland) neck and (below) Marie McGill's (Scotland) neck!
Walter Bucher Photo
The Congress' closing banquet is at the Imperial War Museum (left). Everyone together, great excitement. I shared a table (right) with
old and new friends from France,
Switzer land and Colombia. Among them was Micheline Destreil who founded the lay advocacy move-
Walter Bucher Photo
Micheline and Marie-Odile (Walter Bucher Photo)
placed an advertisement in a newspaper. Her son-in-law, a professional journalist, had the skill and contacts to help her publicize it further. A family in Toulouse was among the first to respond.
In 1977 most French families were reluctant to publicly reveal that their family was touched by HD. Micheline tells the story that one day a man arrived in front of her house with his wife in the front seat of his car. She invited them into her home. He declined telling her that he wanted her to remain in the car. She told him that her husband, who also had HD, was inside. He refused again.
As a biology professor she wanted to place a notice in the journal of her professional association to locate other families. Another biologist whose family was also touched by HD objected to her searching for other families in such a public manner.
Nearly forty years later, Micheline carries on with her "most important message." "We must do everything we can to have this disease be known by people. We must speak out!"
Formally organized in 1978, Madame Micheline Destreil continues to this day as Honorary President of L'Association Huntington France.
In 1977 Dr. Henri Petit asked Micheline, now a retired biology and geology professor, to attend a meeting in Leiden, The Netherlands. Having never met anyone else at the meeting, she was apprehensive about entering the meeting room. She asked him, "Is this a lay meeting?"
