Sunday Stroke Survival: How to Grow a Stroke Support Group

True to my New Year's Resolution in 2017, I became more active in my area's stroke survivor's support group. My old group was huge  (over 200 members on the books). Needless to say, when I got here there were only about ten members. No more than one or two couples attended a meeting besides me.

Don't get me wrong, the group's coordinators try, but for them it's a add-on to their jobs as social workers and patient counselors at the hospital where they work. They are juggling like mad. So enter little old me who was previously involved with a very active group. Of course, this isn't a very large community either. But I know strokes and brain injury survivors exist here  also and more than 10. According to Wikipedia, there are 43,000 folks here. Granted there were only 295,000 strokes worldwide last year. (WHO stat) It might be the 5th largest cause of death, but there were survivors too just like me and you.

So you look for a support group after your stroke, hopefully you find a robust one like I first did. Or you find one with not much to offer. That does not fill your needs at all. You want communication with other survivors, You want to know that you are not the only one going through all of this. You want a good source of information. You want to find out what resources are available for you. You want a bonafide stroke support group. But yours isn't or the leaders are just going through the motions because of time constants like mine is now. How do you get what you want?

You grow a stroke support group.

Things that may stop you in your tracks and seem overwhelming at first. Remember, what I discussed with you about overwhelming a couple of weeks ago?  How do you get stroke survivors to know you exist? How to promote a stroke support group? How to keep it interesting? How to get people to attend? There are a lot of questions you may ask. The main ones being what can I do about it? Can I change it? Is it set in stone or will the people in charge allow you to help? They may honestly, like the way the group is. It's less work. Here are some steps to get you started. If all parties are agreeable. It was what I was going to do the first part of this year before I broke my foot.


Offer refreshments

It's only common courtesy. I started small the end of last year by providing refreshments at each meeting. It was simple finger sandwiches, munchies, sweets, and drinks. Our last meeting was before Christmas so I picked a Christmas themed layout for the spread. I made Christmas cookies, cup cakes, fudge, and chicken and egg salad sandwiches. Of course, this wasn't only for the stroke meeting but Christmas gifts for my neighbors too. For drinks, it was Dollar Store finds...cola, diet cola, a lemon-lime soda, and water. A little bit for every taste.

Since we meet every two months, this meeting was shrimp salad and deviled ham sandwiches, raspberry cheesecake brownies, heart shaped cookies, red velvet cupcakes, and my sugar free, low carb truffles. It was close to Valentine's Day after all. So, it was red and pink colored everything. Again, Dollar Store to the rescue for drinks. It was doable even with a broken foot.

That takes care of the members we already had. On average, we have less than ten at any meeting for right now. I always make enough for 12 just in case. Whatever is leftover goes to the floors for the nurses at the hospital where the meetings are held. It was something I could do and was good at to try and boost attendance.

For our next meeting in April, it's April showers bring May flowers themed. I haven't decided on the menu yet. But you can bet that flowers will be involved.  I'm a former chef and caterer so planning food events is one of my fortes. I realize this is not everyone's. Simply drinks and cookies will suffice. Maybe the hospital cafeteria can help. If nothing else, it's free food for attendees.

Keep it interesting

Next was getting together with the powers that be. I wanted to run all the ideas for possible speakers to the group. Figuring five speakers a year talking on subjects that interest stroke survivors and caregivers. (one meeting is set aside for planning) Some possible topics pharmacy, Medicare, disability resources in the county, physical therapy, a psychiatrist/ psychologist for depression/grief counseling, urologist, and heck I have a long laundry list of folks as possible speakers. Have something interesting to learn. How many times have you read, said or thought, 'It's not rocket science!' At our stroke meeting in February, we had a speaker who is a stroke survivor and a rocket scientist.

Getting new members 

The easiest way to get possible members is to invite a stroke survivors that you meet when you are out and about. Word of mouth is fantastic for letting other folks know you have a group. Other referral sources include doctors, hospitals, nursing care facilities, assisted living facilities, and so on. For this approach you need to have a few things. Business cards with a contact number or/and an email address. A brochure is useful because you can leave a handful at each spot. Flyers and/or postcard sized info blurbs will also work. They are easily designable on a home computers and printers to begin with to hold down costs. That way you have a silent salesman working. Be sure to replenish them every month or so.

Where to leave promotional items...

• Doctor's offices- PCPs, neurologist, heck, any doctor office, but be sure to ask first. Be sure to drop some off with the social workers at neighboring hospitals too.
• Physical therapy locations- every stroke survivor goes to these especially in the beginning. Remember, not only the hospital based departments, but the private ones too.
• How about your local drug store?
• Most stores and restaurants have a community board. Be sure to have thumb tacks and place several.
• Visiting new stroke patients in the hospital. Check with your local hospital for permission.

I'm not saying you have to hit all of these spots at once. Just carry some with you when you go to these places. If you as a stroke survivor or caregiver goes to these places, you can bet others do too.

Even after doing all these things, you may not get more members immediately. I didn't join a support group until a year after my stroke although my speech therapist mentioned it every visit. But I knew one existed. The problem for here is that no one knows about the group. I have a big mouth where a good thing is involved. Or, even something that could be great with a little push.

There doesn't have to be a grand scheme to grow a stroke group, but there are methods that work. It won't get any worse with no effort, but you aren't getting the support group you want and would like  to have either. All's it takes is one person. More if you can get it. Just like with planting flower seeds. You hope to have gorgeous blooms. But before you have them a little work is needed. You have to prepare the soil, plant the seeds, give them water, and maybe a little fertilizer before it can grow. This blog is the seed and some basic information on how to grow it like a seed packet. The effort is yours.

 Getting attendance

The other issue which may confront you is survivors who cannot get to meetings. Public transport for the disabled is not available. They have no full time or part time caregivers that can drive them to a meeting.  Can a current member pick up one extra person or several before the meeting? This is the easiest solution to get bodies at a meeting.

Form a buddy system within your group. Where each member is on a call tree for another member. In this way, you find out what is going on with other members and it's not all on you. Delegate.

Future possibilities

Later on down the road, your stroke group can offer crafting or pottery classes. I do a loom knitting class for ours. Maybe yoga or Tai chi classes. Extra speech/communication get togethers. Special holiday events/outings or dinners in between meetings. The possibilities are endless. But first, with a little TLC you have to grow your stroke support group.

Remember, enthusiasm is infectious. Share your vision and thoughts with others. A shared vision has power.

Nothing is impossible.

Sunday Stroke Survival: Support Systems

You've been stricken with a stroke. It's devastating for you and those around you. What kind of support system do you have around you? If you haven't had an earth shattering event or SHTF happen to to yet, give pause to think about it. Being prepared is forearmed. Nobody is immuned. Life happens and sometimes it sucks lemons.

Now realistically, I am a realist, you can't prepare for every eventuality that happens in your life. I have a terrible family medical history. You name it there are several cases within my family on both sides. It's a constant battle of Russian roulette with all the chambers of the pistol loaded for bear. Take my grandmother. She had seven strokes before the last one killed her. She had that same pistol on both sides of her family. With that history in the mix, you'd know, even if I lived perfectly avoiding all risk factors, I'd probably have a stroke. No, I haven't lived my life up until my stroke with having no risk factors, I was living my life just like the rest of the world. I still don't. Living in fear of what could happen is no way to enjoy and live your life.  Sounds almost like an oxymoronic statement, doesn't it?

But as usual, I digress from the topic of today's blog. Sigh, It's just the way my brain functions these days living post stroke and saying what needs to be said. Back to support systems.

Who you have around you is important and a choice. Yes, I know families aren't chosen, but those who you keep closest and can actually help you is. Sounds materialistic, doesn't it. Actually I'm just being honest here. Everyone has in laws, outlaws, users, and true members despite adversity within their families. Some of you have none left when you sort through the lot. When I honestly searched through mine, I found less than one hand full. Now keep in mind between my four children and ten grandchildren, my in laws (2 sets), my blood sister (her children and grandchildren), six adopted brothers and sisters (and their children and grandchildren), my father and his wife that's a huge amount of folks in my immediate family. But a hand full (four fingers and a thumb) worth???!!! Yep. A lot has to do with distance between me and them. I'm talking about miles not emotional stuff.

When I first had my stroke, they were all around falling over themselves to help. Then, as time wore on (less than six months), they all had the attitude of being put upon. I don't blame them. It was time for me to figure out how to live again. They had their own lives after all. I did it all or did without. What other choice did I have? A heart attack and two strokes didn't kill me. I was still alive. I'm actually grateful to them for the attitude. If you have someone who does everything for you, they are hurting you rather than helping you.

When I was first thinking on this post, my first suggestion that entered my mind was the church. DOH! I'm a minister, right? But the problem with using your church as part of your support system, is it's great for your soul, but lacking in everything else. Most stroke survivors blame God for their strokes and are angry at their deity. I've written about it HERE and HERE to name a few places. You won't meet very many stroke survivors in church. Your pastor may be consoling, but he/she really doesn't know what you are going through. He/she hasn't walked in your shoes.  Christ may understand what you are going through, but a regular minister, me as the exception, can't fully understand.

 But, I ventured out into society to seek my own support system. I had my writer's blog (this one) and started writing about my life living post stroke...because only 1/4 of us actually die from our strokes. At best, it's the blind leading the blind. Except, there were people like me who'd had a STROKE and survived. Some were more experienced (had their strokes years ago) and some were newbies (just had a stroke). There were caregivers of stroke survivors and a whole world of researchers who were reading my blog and reached out to me. It sounds kind of tooting my own horn to say this, but with over 20K hits a month, I think it's worth mentioning. Of course, there were my regular readers of my writer's blog who have continued to read this blog because we had formed a relationship over the years too. Can you believe that next month marks my five-year anniversary of my first stroke??!! Time flies by when you aren't sitting still feeling sorry for yourself.

It's all part of my support system. I know I'm not alone in this surviving business. There's nothing worse than being in trouble and feeling like you are alone. That's how many of us stroke survivors feel. We are shut out of what "normal people" do because we can't do that anymore. Or at leeast not yet. It can be a pretty lonely existence. Except for folks like me that fight kicking and screaming. <Grin>

For me, I had a stroke and a second one being caregiver for a dying husband. I was before and after my strokes until he died. I lost my ministry job. I was unable to drive, barely speaking intelligible, paralysis in half of my body, and a caregiver to boot. In comes part of my support system five months later in the form of my cardiologist. She had known me for decades before I was her patient. A simple question..."Are you driving yet?"

I honestly hadn't tried. But that simple question spurred me into action. I started driving. Very hesitantly at first and only short distances. Luckily my grocery stores, multiple restaurants, and my pharmacy was only a mile away. I also had driven with my left leg only after my hip and knee replacements. So it was just a question of practicing again. See, no experience is lost. But this was a major hurdle of successfully living post stroke. I gained confidence in my ability to live a normal (or new normal) life again. I always say life is about adapting. I gained back a major source of independent living post stroke. So are your doctors part of your support system? Why not? If they aren't fire them and find a better match. They should be and it is your choice.

I needed more one on one support than just the internet. We all do. I found a local stroke support group. Actually, my speech therapist nagged me into going to a meeting. After about a year post stroke, I went and joined them. I had arranged for hospice to be with my husband so I could go. I liked the people. They had an active group. Lively, even. Nobody was in the poor-pitiful-me mode of thought. It was just the group I needed to be in. I was more absent than attending for almost a year, but that didn't stop them from calling and emailing. They still do.

I know some of you are in the same boat as I was. Pick up the phone and call. Can't find a listing? Call your local hospital first and ask. Next try the county council on aging. Even your local Chambers of Commerce may have some information. Ask your neurologist. Ask your therapist. Don't give up.  There are support groups for almost everything. You are not alone.

I finally started going to the support group here in NE Georgia. It's only taken me a year. They are not as big as the one we had in SE Georgia, but it's a start. They are very happy to have me. Last meeting there were 6 members. A far cry from the 50 out of 200 that regularly attended my brainREconnect group. It is run by the local hospital. Or, should I say the neighboring town. At 35 mph on back roads that's close. In a rural community such as this. One town runs into the other. It's only a 10-minute drive from my home. I'm going to shake them up and revamp it like my previous one. They have pretty close to 100 member total. Currently, I'm picking the brain of some long time residents to see what's available. I've found a pottery studio, and possibly yoga instructor that's willing to work with us. The only problem is financing. We need some financial backing and a nest egg to fall back on. Until then, I'm thinking of picnics in the local state park as an outing. There are other such venues available too that are free or very low cost.

This group has reorganized and has new leaders so the possibilities are endless. It's just up my alley as a leader not a follower. It gets me off the homestead and around others. Not that Mel isn't people, but "normal people" just take too much explaining.  So this year, I'm not only growing a garden, rabbits, and chickens, but a support group as well. I've got an appointment with the hospital administrator to talk about a survivor's visitation group. My being a member of the clergy doesn't hurt to grease the wheels in this endeavor. I'll also be visiting neighboring hospitals that will treat stroke survivors. There's power in numbers. It also gets our group out there in the public eye. First I need to know the resources.

So what is your support system if the SHTF? Do you know? Do you know how to find it?

Nothing is impossible.