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.

Tuesday Tumbling Term ~ Tribe

It's been a while sense I've done one of these.The word for today is Tribes.

tribe
trīb/
noun
noun: tribe; plural noun: tribes
    1.  a social division in a traditional society consisting of families or communities linked by social, economic, religious, or blood ties, with a common culture and dialect, typically having a recognized leader.

We form all kinds of tribes during living our lives. We work. Places we live.  We have varying interests, religions, political alinements and play.The sense of belonging is an innate need in humans. For example, I belong to several tribes of people who mesh with my life: Christians, ministers, writers/authors, business women, homesteaders/survivalist, chefs/cooking, knitters, spinners, stamp collector, stroke survivors...yada yada yada. The list could go on forever for me. I rarely meet a subject that I don't want more information on or support. By support, I mean support as a two way street give and get.

Of course, I'm talking about communities. For the past two years, since my stroke, stroke survivors have been a major "belonging" tribe for me. Everyone's lost may be different because it depends on the location of the brain affected but the sense of loss, frustrations, achievements, and sometimes anger are all being vented to somebody whose walked in your shoes. That's a major perk of the internet. I can reach across the globe, if necessary.

With writers/authors, it has and always will be Compuserve's Books and Author's Forum. I've been a member for over twenty years. With stroke survivors, it's a small group of new friends who blog and keep tabs on each other in email like Barb, Dean, Amy, and John to name a few. With spinning and knitting, there's Raverly.

Facebook, twitter, Google+ to name a few are great for meeting people and just general stuff but is that really a community? Yes, you add friends and delete friends, touch bases with family and friends but what if your need is specific? Tribes are the way to go.That's where the real help and support are. That's just online. 

I do have real face-to-face contacts also. There's nothing like speaking/emailing to someone that's there or has been there/done that. "Oh my goodness! You actually meet people face-to-face?! Yep, I do. I don't discount the power of actually looking into someone's eyes and physically touching another soul. I have local groups for writers (some very well known), stroke survivors, and even fiber artists. We get together as often as we can.

They are my tribe...I think I'll keep them.

Keep writing and loving the Lord

Tuesday Tumbling Terms ~ Editing

Today's word is Edit.
ed·it 
1. a. To prepare (written material) for publication or presentation, as by correcting, revising, or adapting.
b. To prepare an edition of for publication: edit a collection of short stories.
c. To modify or adapt so as to make suitable or acceptable: edited her remarks for presentation to a younger audience.
2. To supervise the publication of (a newspaper or magazine, for example).
3. To assemble the components of (a film or soundtrack, for example), as by cutting and splicing.
4. To eliminate; delete: edited the best scene out.

It's one of the most time consuming thing a writer does besides actually writing the book. It is one of the most hated things short of writing a synopsis. There are some weird birds out there that live for this process and while I enjoy it...it's not my list as one of my favorite things to do.

What a good editor has...

• It takes extensive knowledge of English grammar.
• Time
• Nit-picking
• Deleting- sometimes entire sections
• Weeding out all the filler words, "ly," "ing," and passive sentences
• A good eye both narrow and broad

That's just to name a few.

There are different types of editing...

• Developmental- outlines, drafts, content, organizational, rewriting
• Substantive- overall clarity and accuracy, readability, and reorganization of paragraphs
• Copyediting- spelling and grammar, consistent style and format, and cross checking references
• Proofreading-  typographical errors

This is just the tip of the iceberg and you know with icebergs there's the largest portion still unseen. There's hundreds of different things each edit does. Granted as writers, we tend to do several of these things at once. But still we have to go through the process.

For me, I'll go through each step along the way and after I write "the end" several times. The next step is to have it go through my critique group who are grammar Nazis. My list of Beta readers (specific to genre) will catch the Substantive and Proofreading.

The key is don't feel as an indie author you have to go it alone. Ask or pay for help. If you pay for help, check the editors' history and background. Nobody is an expert in all areas. Even professional editors make mistakes or have an off-day. If you are getting the services for free, be patient. Not everyone is on your time schedule. Wouldn't you want them to be thorough and slow rather than quick and miss something?

But like anything, this is your baby and you call the shots within reason. If you are obstinate like I'm prone to be, and hard to work with no editors worth their salt will work with you. By the same token, if you look at it as a learning experience, it's easier to take some pretty hard blows your editors will dish out. AND believe me, they will. Some of your favorite lines or scenes will be cut as it's-just-not-working.

Are you going it alone? Should you be?

Keep writing and loving the Lord.