MINDEMOYA—Parkinson’s is a devastating disease, often first heralded by a loss of an individual’s sense of smell and taste while for some the first hint is noticing that their handwriting is shrinking and changing. Sometimes these are normal signs of aging, but they can also be the early signs of Parkinson’s Disease. April is Parkinson’s Awareness Month and members of the local support group took the opportunity at their monthly meeting (they meet each month except July and August) to go through the many services and supports that are available to those coping with the impact of this debilitating disease.
Facilitators Marilyn Proulx, RN and Nancy Collins, RD took the group members through the resources to be found at the Parkinson’s Canada website (www.parkinsons.ca) and what is available through the magazine Livewire as well as the current research in the field.
One of the key messages about dealing with the disease is the importance of starting therapies early. One such treatment, the Lee Silverman Technique delivered through hour-long sessions with a speech therapist four times a week for four weeks, can actually be accessed online and through telehealth.
The Lee Silverman Technique sessions stress the concept of “thinking loud in order to speak loud” and use exaggerated motions and behaviours. Through video documentation, the patient’s loudness is measured through a series of voice exercises using a decibel sound meter. Targeting the vocal chords is a way of expanding the patient’s capability of speaking more fluently despite the conditions of Parkinson’s.
“We are looking to stretching the therapy sessions to two times a week for eight weeks,” said Ms. Proulx.
Sufferers reference that the challenges of dealing with the impact of Parkinson’s on speech makes it “almost like learning a new language.”
Another important technique showing great promise in the battle against the symptoms of Parkinson’s Disease utilizes dance and music to train the muscles and brain to overcome the balance and physical impact of the disease.
“When I hear the music of the ballets I used to dance to, it all comes back,” noted one Parkinson’s sufferer in a video presentation.
The linkages between the brain and muscle memory become disconnected with the onset of Parkinson’s, music and the rhythms of dance help to reconnect those lost pathways.
In any event, it is hard to overemphasize the importance physical exercise plays and when it comes to engaging in exercise it is very important to choose an activity you like so that you are more likely to stick with it.
Parkinson’s disease is a movement disorder better known for its motor symptoms such as stiffness, slowness, walking problems and tremors. Many of the participants at the Parkinson’s meeting reference the morning Parkinson’s Shuffle, the difficulty of movement first thing in the morning when waking up.
“Sometimes I have to roll over and practically fall out of bed,” noted one woman.
Few people are aware that the condition also includes several non-motor symptoms such as loss of sense of smell, smaller handwriting, sleep problems, chronic constipation or a softer speaking voice, any of which can manifest many years before a Parkinson’s diagnosis.
One of the lighter-hearted moments in the meeting came with the viewing of a country music video on YouTube, Mich Haile’s ‘Blame it on the Parkinson’s.’ In the video, alcohol is vindicated as the cause of a variety mishaps brought on by the debilitating effects of the disease. It was clear that many of the symptoms referenced in the song were familiar in some form to the support group members.
One support group member demonstrated a tool that is handy for those who have a number of medications to take over the course of a day, a hand-held electronic reminder that doubles as a pill box.
The resources referenced throughout the meeting also included advocacy lists, a reminder of the disability tax credit for which many suffers are eligible, webinars and exercise books and the popular ‘Lunchtime Chats with Charlie.’
Following the formal part of the decidedly informal support group meeting cookies and coffee made an appearance.
The Parkinson’s Disease support group may be familiar to The Expositor readers from their annual fundraiser, the Parkinson Superwalk.
The number of Canadians with Parkinson’s is expected to double in the next 15 years.
