KITCHENER-WATERLOO - Adjusting to life after a brain tumour diagnosis can be a challenge for both patients and families. Meeting with others who are in a similar situation is one positive way of coping with this life changing disease. For Mike and Karin Endresz, attending the monthly support group offered by Brain Tumour Foundation of Canada is crucial to winning their fight with a brain tumour.

A spring 2003 trip to Germany became a life-changing journey for this couple when Mike experienced a grand mal seizure and was subsequently diagnosed with a brain tumour. Very quickly after returning home to Ontario, Mike underwent surgery for an atypical meningioma that was attached to his sinus artery. During this hectic time, he and his wife quickly learned the importance of a strong support network and by the summer were attending their first support group meeting in Kitchener/Waterloo with other survivors and patients.“We immediately met someone with a very similar case,” Karin explains, “which provided us great comfort.”

In addition to meeting others facing similar diagnoses, Mike and Karin learned about Brain Tumour Foundation of Canada’s other resources including the Information Day patient conferences. As a result, they attended the 2004 event in London where they met a new physician who agreed to take on Mike’s case. Since then, Mike has been admitted to hospital to examine his ongoing seizures, had a second surgery and radiation to combat the return of his tumour, and faced the emergence of four more brain tumours. He is now being monitored with MRIs and is trying to cope with frequent seizures.

“It has been so important to us that we have consistent contact with someone who has been there,” says Karin. “We enjoy the support groups because they give us a place where we can be honest and open. Many people attend as couples and it is so helpful to speak with other spouses. We find that we both always leave in a better frame of mind than when we went in.” Mike adds, “Lately, I also get great satisfaction from meeting newly diagnosed patients and offering them our story which gives hope that long-term survival with a brain tumour is possible.”

Mike and Karin have continued to attend the Kitchener/Waterloo support group and found it to be so helpful that by the end of 2006 they were also attending the support group meetings in Guelph. “We’ll take all the support we can get!” laughs Karin.

Because the brain is the centre of thought, intelligence, emotion and movement, brain tumours (both benign and malignant) can feel like an attack on an individual’s very identity. As the Endresz’s learned, brain tumour support groups address all the associated features of this life-threatening illness including problems with behavior, memory, personality and speech and of course, overall health. Trishna Wedemire, Support Services Specialist at Brain Tumour Foundation of Canada explains: “Support groups offer a unique opportunity for people with a brain tumour and their loved ones to share experiences and gain emotional support in a safe and relaxed atmosphere. “

Trishna shares how in the relaxed format of the conversations, “participants are encouraged to share joys, fears, and day-to-day problems in an open way.” Each person decides whether or not to take part in a discussion and everyone speaks for themselves.

For over 15 years, Brain Tumour Foundation of Canada has been providing a national network of support groups for those affected by this devastating disease. Brain Tumour Foundation of Canada offers 22 Support Groups across Canada and is affiliated with an additional eight groups. Individuals surviving with brain tumours and their families are welcome to attend any of these free support groups, regardless of where they live.

The next meeting of the Kitchener/Waterloo Support Group is Tuesday, September 8, 2009.
The next meeting of the Guelph Support Group is Monday, September 21, 2009.

Kitchener/Waterloo Support Group
When: Second Tuesday of each month, 7:00 to 8:30 pm
Where: Christ Lutheran Church, 445 Anndale Road, Waterloo, ON

Guelph Support Group
When: 3rd Monday of each month, 7:00 to 8:30 pm
Where: Westminster St. Paul's Presbyterian Church, 206 Victoria Road North, Guelph, ON