HAMILTON AREA DYSTONIA SUPPORT GROUP NEWS November 19, 2009,

LIONA BOYD has Focal Dystonia Liona Boyd’s struggle with focal dystonia & how she came to terms with learning to continue making music in a whole new way, after spending hundreds of thousands of dollars seeking treatments is explained in articles in the Globe & Mail & the Hamilton Spectator, in September. Thanks to Harry Lovering, for bringing this to my attention. You can find both articles on the first page of the DMRFC’s website. www.dystoniacanada.org.

2009 Buskerfest

On Hallowe’en Saturday, a few members of the Support Group gathered in the Dunnville Sobey’s foyer to raise funds & awareness for dystonia. 14 musicians came to play for 15 minutes each, generously donating their time & talent to the occasion. We ran out of handouts. The event generated 3 newspaper articles and $1,044.00. This was our 5th annual & musicians are already asking to participate next year. Many thanks to Bryan Melick and Jeanne Spencer for their help and of course many thanks to Sobey’s staff & management for being such gracious hosts. I hope more members of the Hamilton Group will be able to help out for any amount of time next year. We have a lot of fun, but it is exhausting. We need help! Diane Gillespie, our National Director has offered to come and help chat with folks & hand out pamphlets. I may be tempted take her up on that offer

At our Nov. 14 Meeting,

We were pleased to have a good attendance. We welcomed newly diagnosed Cher Fitchett & shared with her our botox experiences. She will be getting her first botox in January, for her cervical dystonia, from Kitchener specialist, Dr. Stewart. Good Luck Cher! We discussed the use of Magnesium supplements for muscle spasms. Magnesium is used to treat Restless Leg Syndrome as well as slight muscle cramping, Charlie horse or strains from over exercising. Doses of magnesium will likely NOT put a stop to your dystonic symptoms. There are many ways to add more magnesium to your diet, if you wish to. Foods like whole wheat flour, many kinds of nuts, black beans, pumpkin seeds & dark green leafy veggies like spinach are great ways to add extra magnesium, if you wish.

Always check with your doctor or pharmacist before adding a new supplement to your regimen!

It may react with meds you already take.

This is some information about magnesium uses in the body that I found on the internet.

“Nerve and Muscle Relaxation

Magnesium and its fellow macronutrient, calcium, act together to help regulate the body's nerve and

muscle tone. In many nerve cells, magnesium serves as a chemical gate blocker - as long as there is

enough magnesium around, calcium can't rush into the nerve cell and activate the nerve. This gate

blocking by magnesium helps keep the nerve relaxed. If our diet provides us with too little magnesium,

this gate blocking can fail and the nerve cell can become over activated. When some nerve cells are over

activated, they can send too many messages to the muscles and cause the muscles to over contract. This

chain of events helps explain how magnesium deficiency can trigger muscle tension, muscle soreness,

muscle spasms, muscle cramps, and muscle fatigue.

A severe magnesium deficiency called hypomagnesemia is unusual in a healthy person because normal

kidneys are very efficient in keeping magnesium levels balanced. However, magnesium depletion can

occur as a result of some kidney disease or gastrointestinal disorders that impair absorption of

magnesium in the intestines in the body. Chronic or excessive vomiting and diarrhea may also result in

magnesium deficiency.

Symptoms of magnesium deficiency vary widely as magnesium plays a wide variety of roles in the

body. Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and

weakness. As the deficiency progresses, muscle and nerve functions are affected and symptoms include

muscle weakness, tremor, and spasm. Tingling sensations, numbness, seizures and personality changes

are also observed. Magnesium deficiency can result in arrhythmia and increased heart rate. “

You can also absorb more magnesium into your body by soaking in a warm Epsom salts bath. It is very relaxing & helps to soak away toxins. Better than commercial bubble baths!!

XEOMIN Merz, a pharmaceutical company, has been holding presentations to promote their new botulinum product, called Xeomin, across Canada this year. After speaking with some folks who attended the presentations, & who have asked neurologists about this product, I find that it is not different than Allergan’s Botox. Merz presents its product as having fewer proteins & therefore being less likely to cause a buildup of antibodies. Merz also says that their product has a longer lifespan & does not need refrigeration. Allergan answers these statements with the fact that Botox doesn’t NEED refrigeration, but it is kept cold as a safety precaution. Allergan also says they have no indication that their product causes a buildup of antibodies. So, consumers, it is up to you to discuss these questions with your own neurologist or Movement disorder specialist. I know we have members that have been told they are now immune to Botox. I have no answer for you. Ask your Doc.

NEW BOOKS

We have ordered 2 new books for our support group. When they come in, you will be able to borrow them by attending a meeting & signing them out. A“Massage Guide for Spasmotic Torticollis” is one that I have been sharing with my physio therapists & RMTs. Rose & I feet it will benefit the group to have our own copy for you to look at. If you & your massage therapist like it, you can order your own. The second book I have ordered is “Yoga for Movement Disorders”, by Renee le Verrier. I have been going to yoga classes for 20 years & this book is exemplary in showing how to modify regular yoga poses to be acceptable for the movement challenged. We also have copies of the documentary “Twisted” and a relaxation CD by Karen Ross, a psychologist who works with dystonia patients in the US. She has children with dystonia & is a member of the American Foundation Board of Directors.

The Angels are here!! Rose tells me that the fundraising Angels that we have ordered through her have arrived & await her picking them up. She will be in touch with those who ordered them. We raised $190.00 through this fundraiser…good work & thank you Rose!

Christmas Party

On Dec. 12, we will have our Christmas gathering at St. Peter’s Hospital, 88 Maplewood Ave. during our regular meeting time, 10:30 until 12ish. Rose will bring a tray of small sandwiches & asks that if anyone would like to bring brunch-type munchies, fruit tray or pastry to add to our wee feast, please do. Please attend this casual gathering. It is a good time to catch up with each other and a break from the holiday bustle.

DATES FOR EVENTS NEXT YEAR Meetings; Jan. 23, Feb. 6, Apr. 17, May 15, Sept. 18, Nov. 13 Events; Walk-a-Thon June 12, Buskerfest Oct. 30, and Holiday Party Dec. 11 If you have any questions or suggestions for meetings or would like to participate or hold one of meetings please call: Rose Gionet 905-575-3534 Laurie Bell 905-774-4111