Support Groups – A Safe Haven

A support group is a safe haven — and much more. Everyone whoattends a support group may get different things out of the meetings.

Right after being diagnosed, it was important for us to participate in our MDA/ALS support group because we were treading water in an uncertain time in our life. But we didn’t know what to expect from the meetings, and frankly we were a little hesitant to go for fear of being exposed to more than what we wanted to see.

Many Benefits

As it turns out, going to the MDA support group for people with ALS in the Denver area has become one of the highlights of our month. We’ve received two primary benefits — and many other fringe benefits.

First, since the beginning of our life with ALS, support groups have exposed us to people who were ALS veterans. They were filled with knowledge and advice on what things help, what doesn’t help and what they would change about their lives. We call learning from them “not having to reinvent the wheel.”

Second, through our support group, we’ve been able to give back and feel useful to other families by providing our perspective and positive attitude.

The fringe benefits include forming new friendships and finding a safe place to talk about all the challenges and victories we experience with ALS, among people who understand firsthand.

The closeness and shared learning that arise from meeting regularly with other people are the main reasons for attending support group. But the outside information provided by the MDA coordinators in the form of guest speakers is also invaluable. At our meetings, we’ve had speakers and discussions covering a range of subjects, including gadgets, physical therapy, augmentative speech devices, hospice care, denial and grief counseling, insurance, assisted living, family issues, cultural issues and spiritual issues of all kinds.

There’s an important social aspect to support groups as well. We enjoy hearing about everyone’s trips, community involvement and even the dark humor that only families with ALS can truly appreciate. Humor is such an important coping mechanism with this disease.

Make It Your Own

The MDA support group in your community is yours for the taking. Make it your own and encourage others to attend. Our group includes patients, caregivers, mothers, fathers, sons, daughters, brothers, sisters and friends (some of the people with ALS don’t even live in the same state as the family members in our support group). You might be surprised as to what you get out of these gatherings.

If you’re planning to attend a support group meeting for the first time, check out the subject to be discussed. If it happens to be hospice, for example, that may be an important subject, but one you may not be ready for if you’re in the early stages of ALS. Perhaps you’d prefer to wait for the next meeting.

Or, if you don’t like the first meeting you attend, give it a second chance. These sessions are very dynamic in their content, so one month’s interactions could be entirely different from the next.

In closing, we’re grateful to MDA for facilitating these support groups for us. They’re an incredible tool to aid us in our life with ALS.

One thing we’ve learned in our new life: We can’t do it alone. MDA is there for us, not just leading the research efforts, which give us hope, but providing top-notch services as well, including support groups where we can be among friends.