About Chiari People
if you feel that this may also be something you feel called to do, here is that process in an outline, to help you begin:
Hosting a Support Group
Consider the commitment, once you start, you need to continue—no matter how you feel, people will be counting on you. Find someone to replace you if you cannot make it to the meeting.
Find others around you with Chiari or these associated diseases who would want to discuss this medical dilemma and are interested in helping others and being a part of your group.
Find a place. Local eateries proved to be too crowded and noisy. We checked out the city library but got an offer from one of the local hospitals. If you intend to show a video regularly, you will need a meeting room with Audio/Video capacity. Our hospital provided A/V tech assistance (in case I couldn’t run their equipment, which I couldn’t), to help set everything up each month. We have all of the different techs phone numbers, knowing they are there to help us, they have all been amazingly kind and gracious.
Pick a date. Ours is always the 1st Tuesday evening of every month at 7 pm, except for the New Years week and the 4th of July, otherwise that date usually works quite well. (We have skipped the January meeting once, and instead of a regular meeting in July, we do something fun and different, one year we had a BBQ at one families house, last summer we all went up into the Beartooth Mountains and spent the day at another families cabin).
Choose a topic or subject you may want to address each month and prepare something, whether it be a medical video or a speaker. (SEE Discussion Topics in “Chiari is a Neurological drag”). Having a presentation from someone in the medical community is always exciting. Examples: we had the medical director of Montana’s Genetics program give a wonderful power-point explaining how Chiari is passed on through the generations; the Neuropsychologist from our area brain injury clinic came by and taught us what kind of symptoms the pressure of a constant Chiari can cause to our poor brains; we were fortunate to have a Master of Physical Therapy arrive and give us a power-point regarding what happens to these muscles that get cut when we have our varieties of surgeries and how to use physical therapy to gain control of them again, to the best of our ability. In May of 2007, we hosted an ASAP luncheon and invited a well-known and respected Neurosurgeon from Denver to teach us, that was a real highlight. We invited the community and ended up with 147 people!
Send out a reminder about 2 weeks before the day of your meeting, by phone, e-mail and/or poster. Get volunteer help if possible from friends or family members who do NOT have Chiari. Sometimes Chiari patients will commit to something and then find themselves unable to function and attend at the last minute. DO NOT take this personally, it happens a lot, it is the nature of the chronic illness beast, plus much of what we need them to do will make their symptoms worse, like folding brochures.
Create a monthly poster with your who, what, when,
where and why’s to mail or pass out and get permission from the hospital
to post them; then do it every month, consistently. Each month, change
the info and print up as many as you need, then send them to the new
patients who request assistance and info, and drop them off at doctors
offices to let them know what you are sharing for the month.
Lay down some ground rules and keep them. Meaning? Many if not most of the patients who have come into our group are there out of fear and/or frustration; fear of what lies before them, their child, spouse, friend or family member, and frustration at being misdiagnosed, or misunderstood by their medical communities. This set of emotions can be like a volcano about to blow, often there is anger. Do not let your meeting become a time to doctor bash; we have had patients get up, walk out and never return because of this type of behavior. Your meetings should be a time to accomplish something positive, to forge important and powerful friendships; keep your personal negative feelings for any doctor to yourself, or have private meetings to discuss any volatile situations.
Collect current, correct information to share. Study the docs who are considered Chiari experts: study their websites, resume’s, speak with their patients, find out how they are doing. We watched and followed the care of many patients for years on the world-wide Chiari support group, WACMA (World Arnold Chiari Malformation Assoc.) and paid attention to which docs were having success before we began this venture; we then either visited these docs personally or wrote to them and asked if we could use their information, no one said no. We regularly receive brochures and info from different doctors and organizations and we display them at our monthly meetings so patients know they have options when deciding where to get their care.
Print up a sign-up sheet for each meeting: get Name, City and Phone or E-mail so you have a list each month of who attended. Meetings can get a little chaotic, especially if there are a number of new people all at once. Using e-mail to contact people saves a ton in postage and time, and you can do one mass e-mail to patients, one to your medical community, then one to friends who support you. Make sure you print out extra posters each month and send them out to those who do not have a computer.
Stay on time! We have our meeting room from 7 to 9 pm, it takes us ½ an hour to set up. We start our video or special speaker at 7:15, after, we have a Q & A session (Utilize the wealth of knowledge and experience your members have, everyone has something to share, know each persons story and conditions, and let them answer whatever questions they can). We must start packing up to leave by 8:45, the building closes at 9 and the techs want to go home too. Get help loading in and loading out.