I have gathered some ideas for Support Groups and I will share them with you at the end of this article. Quite frankly I do not attend Support Groups. I have had the opportunity to speak at one and enjoyed it, but I do not go to them. I had the occasion to attend a meeting once at about a few months after my initial diagnosis and my son attended with me. They had a person there from Bell and she was telling us of the different phones and services that they supply, which I found interesting. After that things seemed to go down hill; what seemed to happen is that the people who had ALS the longest gathered together and those of us who had no idea what was going on just kind of hugged the wall. Needless to say we did not stay very long. I am not saying that they are still the same here or that what happened was not more in my mind than what actually took place.
I would never run a person down for trying to start a Support Group or for doing their best to get people out to the meetings. These people are to be commended for their time and effort and will always have a spot to advertise their meetings on my site. They are hard for me to get to for one thing as I do not have a vehicle and they are held a fair distance from our place of residence. We do have handicapped transportation here but you sometimes are very lucky if you can get an appointment.
I do feel that support as such can come from different ways than Support Groups though. I have a friend who calls me practically every night and I would call that Support. I have my web site and lots of people writing me with questions that I try my best to answer and I call that Support as well. To have a family who stands behind you, no matter what, is also Support, Shirley sometimes makes me feel guilty by waiting on me hand and foot. But that is Support in my mind. The ALS Societies that are there for you when you call are definitely a form of Support. So it is not just meetings that are a form of Support but everyone that touches your life and are there to help you are a source of Support. Perhaps you are just getting 10 people (for instance) out to your meeting, but if those ten are talking to two or three people after the meeting, then in essence you are touching 20 – 30 people and maybe more as you don’t know who those 20 – 30 are talking to.
One thing that really gives me a pain is this privacy issue and those that want to supply Support but can’t find out who needs it. I cannot for the life of me see why a Society cannot give the name of a person with ALS to someone who wants simply to help that person through the pitfalls of ALS. After all, if the Person with ALS does not want to deal with a Support group all they have to say is that they are not interested. But what about the people that are interested and have no way of finding out about the meetings, where do they turn for advice and help? I feel that every last ALS Clinic should have Support Group information posted in them for these people to turn to. It seems to me a terrible thing when someone tells you that you have an average of 2 – 5 years to live, good bye, see you next time. The trouble is that the 2 – 5 years is strictly an average and people who are newly diagnosed have to be told that. From doing the ALS March of Faces I have seen those averages and they are very misleading. If you have 10 people and they are all given that average then what happens to it when one or two of them pass away within a few months? Is the time that they did not use passed on to the other 8 to share among them? I think that this has to be explained to people, and with nowhere to turn, who is going to do that? Would it not be a whole lot easier for the Clinic to tell them to go to a Support Meeting in their area and meet others with ALS and see how they cope and how long they have been around. I am not saying that people don’t die from ALS, we all know that we do and will. The question is when… and with some Support and education it is possible to at least make them feel comfortable about the whole process. I feel that I have met some of the most upbeat and downright nice people since this disease came into my life and only wish that we would have met under different circumstances.
In closing this little tirade I just hope that by putting Support Group meetings from all over on my web site it is reaching those that want to attend. I am afraid that you will not meet me there though none the less!
THE FOLLOWING ARE SOME SUGGESTIONS SENT IN:
FROM SASKATCHEWAN:
HI GEORGE; FOR OUR SUPPORT GROUP MEETINGS WE MEET ONCE A MONTH THE THIRD SATURDAY OF THE MONTH. WE TRY TO HAVE GUEST SPEAKERS FOR EACH MEETING EXCEPT A COUPLE TIMES A YEAR WHEN WE HAVE JUST A GREAT VISIT TO FIND OUT WHAT OUR PEOPLE WANT. THE FOLLOWING IS AN EXAMPLE OF THE GUEST SPEAKERS WE HAVE
A RELAXATION THERAPIST
AN AROMA THERAPIST
AN O.T. SHOWING HOW TO LIFT, TURN & TRANSFER PATIENTS
A TOUCH & REIKE THERAPIST
A PALLIATIVE CARE SOCIAL WORKER
A PALLIATIVE CARE CHAPLAIN
LAWYERS ON WILLS
ONE OF OUR PATIENTS TOOK THE MEETING A COUPLE TIMES TO SHOW HOW TO MAKE FOOD EASIER TO SWALLOW THEN WHEN HE GOT HIS FEEDING TUBE HE SHOWED ALL HOW IT WORKS
A PALLIATIVE CARE MUSIC THERAPIST
A SOCIAL WORKER ON LIVING WILLS
PALLIATIVE CARE ON HOW TO REGISTER WITH THEM
YOURSELF OF COURSE ON YOUR JOURNEY WITH ALS
LAST MONTH WE HAD A NURSE COME TO TALK ABOUT THE LIFE LINE (I've fallen & I can't get up lol that is the best way to describe it although here have been some improvements made ) I HOPE THIS IS WHAT YOU WANTED. WE HAVE AS YOU KNOW A GOOD GROUP IT IS VERY INFORMAL WE SERVE LUNCH & COFFEE
Lorraine
FROM OHIO:
I thought I would tell you about how we started our support group and what we continue to do.
When we first started we had no idea how many people were in our area that had ALS. We just made up Flyers that said we were holding our first ALS Support Group meeting and put them up all over the area. We listed the topic as "Sharing and Caring."
Our local newspapers and radio stations advertised what we were doing at no cost. It was considered a public service.
We hold meetings monthly and have speakers:
A Respiratory Therapist (Topic Respiratory Support)
A Neurologist
A Physio Therapist (Topic Taxing Your Muscles)
Someone from Community Mental Healthcare (Topic Stress Management for Caregivers)
Someone from Home Health Care (Topic Home Health Care for the Client & Caregiver)
Someone from Society for Equal Access (Topic Promoting Independent Living)
We had one meeting that we called a Round Table Discussion so people could tell us what they wanted or needed from us.
After the speakers finish we open the floor for questions. We have refreshments and people mingle and discuss things with each other. I have found that the question session with the speaker brings everyone together.
You need someone who is willing to coordinate the meetings so there is some order to it. They should help to make the newcomers feel welcome.
Our group has been meeting for about a year and a half. All persons with ALS and their families who have attended have stayed. I truly feel that makes us a "Family" Support Group.
We don't just have meetings. We had a Wiener Roast this fall hosted by one of our members. Friday night we will be getting together to decorate a float for a Holiday Parade on Saturday. Just the planning of these types of things is fun.
Phyllis
FROM ONTARIO
HI GEORGE;
GUEST SPEAKERS THAT HAVE BEEN ALREADY LISTED ARE VERY HELPFUL.
I ALSO FOUND JUST CHATTING WITH OTHER PALS AND CALS VERY HELPFUL. THE EQUIPMENT THEY USED, THEIR HOME CARE, HOW THEY SPENT THEIR DAY, AND ANYTHING WE COULD SHARE TO HELP EACH OTHER.
hugs janice
FROM BRITISH COLUMBIA
Over the past few months, we have experienced changes with some new volunteer leadership of Support groups, and thought perhaps it was time to revisit what these are all about.
Who Attends? Anyone affected by ALS - patients, caregivers, family members, bereaved and friends.
Where are they held? In a variety of settings, from church halls to living rooms across BC - from the West Kootenay to Vancouver Island.
How often do they meet? Generally once a month for about 2 hours, with activities planned as desired by the group.
Why attend Support Groups? They offer opportunities to share experiences and feelings in an open and accepting environment. They provide a means to feel validated, to understand that one's feelings are familiar territory to others - which can reduce feelings of isolation. Groups come together to problem solve, gather information, and to learn coping strategies. They are a place to make a friend, and to be a friend.
What do they do? They provide a positive atmosphere for discussion on a variety of relevant subjects. Guest speakers are sometimes asked to present on topics of interest, and occasionally a video is shown that may provide insight or information.
The Support Group Pact
1. Everyone will have the opportunity to speak, but not be obliged to do so.
2. All information disclosed is private and confidential.
3. All expressions of feeling, including laughing and crying, are allowed.
4. We will not interrupt when someone is speaking about something important to them.
5. We try to be sensitive to the feelings and opinions of others. This is your group! Suggestions and feedback are encouraged and welcomed!
For more information about joining a Support group in your area, please contact John Braun at 250.995.2768 (drs@alsbc.ca ).
"Guard well within yourself that treasure, kindness. Know how to give without hesitation, how to lose without regret, how to acquire without meanness." George Sand
