On July 22, 2012, sixty guests attended an English Garden Party fundraiser for the Restless Legs Syndrome Foundation. The event was hosted by Matt and Donna Payne of Pigeon Lake in their lovely garden oasis. Family members, sixteen in all—including aunts, uncles, cousins, children and grandchildren—pitched in to help decorate, cook, serve, and perform the fabulous Beatles’ song, “Octopus’s Garden” (I’d Like to Be Under the Sea).
Guests also enjoyed the smooth musical stylings of Barbara Myers and were delighted when Trevor Payne joined her with his guitar for the song, “Inch By Inch”, followed by two solos by Trevor—“Mr. Peabody’s Coal Train” and “Homegrown Tomatoes.”
Vonda Peterson designed and painted a colourful framed botanical watercolor, entitled “Our Canada”, for a silent auction. The painting features the floral emblems of our provinces and territories on a background of maple leaves. Carolyn Ripley of Mameo Beach submitted the winning bid.
Donna gave a moving account of what life is like for those suffering with severe RLS and the ultimate search for hope—to find a cure. This is the third time Donna and Matt have hosted the RLS fundraiser. For their devoted efforts in raising awareness and successful fundraising, they were presented with a rare white rose brought from Ontario.
Guest speaker, Dr. Ronna Jevne, is a professor with the U of A Department of Educational Psychology and author of several books dealing with hope, including “Hoping, Coping & Moping: Handling Life When Illness Makes It Tough” and “Tea for the Inner Me.” She generously donated a portion of book sales for the RLS fundraiser. After sharing a moving personal account of finding hope, she suggests journaling— “therapeutic writing”—as an avenue to health. Better yet, why not blend the time honored traditions of the tea ritual with journaling? Why tea and journaling? “To find that quiet and wise place within ourselves and to take the time to reflect…asking why, how and what if. Illness, especially long term illness, is a thief that steals our lifestyle, our humor, our sense of belonging, and our sense of future.”
Dr. Jevne suggests it’s wise to be a hoper, coper and, yes, even a moper.
“Moping signals something is wrong, so give yourself an hour to mope—use your journaling.” But don’t feed the mope, because mopers: tend not to believe things can change, strongly believe in “life happens according to the plan”, they are attached to needing things to be fair, and that there shouldn’t be any pain…people should be loving and loyal. Moping doesn’t work. It tests the capacity for people’s compassion.
“Copers appear to handle things well on the outside but are hurting on the inside.” They are knowledgeable, assertive and compliant with medications. However, chronic conditions wear problem solvers down. They need to learn to say, “I need help.”
“Hopers see a future and teach us to dream.” They model the ability to walk difficult paths, go against the odds, change goals on the fly and figure out ways around obstacles. It’s good to have a little bit of all three in us when facing “hope sucking” chronic illness.
“Finding deep quiet is a good mental health practice,” says Dr. Jevne. Many find it gardening, journaling, or partaking in the ritual of tea. She also says it is a good idea to get three relationships in place—self; community (partner, kids, and the greater community); and what Dr. Jevne calls “The Greater Than.”
The party ended with the release of six bright-yellow, helium filled balloons inscribed “Hope for RLS.”
Trevor Payne has known “hope sucking” illness for most of his life. But he has managed to adapt and finds hope in the form of music. For the past 25 years, he has been playing guitar and now appears with Bob Kochan in Black Pool doing mostly original folk roots music. You can catch Black Pool’s next gig at Beans in Wetaskiwin this coming September. This is quite a contrast to his early years of suffering with severe RLS.
Trevor spoke with Pipestone Flyer about his childhood—his school years in particular. As we sat, Trevor would jiggle his legs or squat—two things that relieve the inactivity-stimulated, electric prickly sensations in his legs. Curiously, Trevor says he also finds physical relief in reading technical manuals—anything that requires greater mental concentration.
Trevor’s RLS was misdiagnosed for many years due to an overlapping muscular illness—Thompson’s Disease (TD). TD is characterized by prolonged contraction of the muscles whenever voluntary motion is attempted, contraction and relaxation is slow and muscles stiff.
Being forced to run track or play baseball and then being forced to sit during classes was physical torture—a double whammy! If only he had been allowed to stand or pace, he could have learned better. His report cards shout the glib reprimanding words, “Just apply yourself.” One can only imagine how difficult it was to learn while enduring extremely distracting sensations.
Trevor, like many other RLS sufferers, found a way around this learning obstacle by studying very hard at home where he could pace as he studied and as a result, he did well on tests.
For years, despite Trevor’s insistence that something else was wrong, neurologists returned to the Thompson’s Disease diagnosis only. Fortunately, Dr. Helen Hayes, a Palliative Care Pain Specialist, now retired, diagnosed Trevor’s RLS. Trevor was placed on specific medications to relieve symptoms—including meds used in the treatment of Parkinson’s, opiates, and anti-anxiety meds. They helped a lot! Trevor is proof that, while there is no cure for RLS, there is symptom relief.
During what Trevor describes as a crisis, he met Dr. Jevne who further helped him through the practice of Buddhism. Thanks to the hope Dr. Jevne has offered, Trevor says he is now able to function much better.
Trevor would like us to be aware of four things:
First, believe that RLS as a real condition. RLS is not in your head.
Also, to realize that people with RLS have limitations—they are often exhausted from lack of sleep because the nighttime inactivity brings on the sleep-disturbing sensations. Long flights or car trips…even sitting through a movie can be too distressing.
Don’t give up on friends with RLS—Trevor has lost friends because he was unable to go places and do certain things with friends.
Finally, money is needed for research.
The RLS Foundation’s goal is to increase awareness, improve treatments, and to find prevention and cure through research for Willis-Ekbom Disease, the new name for RLS.
Nearly $6000 was raised at the 2012 English Garden Tea Party—nearly double the previous fundraiser earnings! Well done!
Do you have the URGE? The following four indicators are used to help diagnose RLS:
Urge to move the legs and sometimes other body parts—usually with abnormal, creepy-crawly, prickly or other weird sensations,
Rest induced—inactivity makes it worse,
Gets better with activity such as walking or stretching,
Evening or night worsening—symptoms tend to calm in the morning.