Guest Blogger: Ed Murfin

The Value of RLS Support Groups Ed Murfin is a retired minister, former RLS Foundation support group leader for northeast Florida and...

The Value of RLS Support Groups

Ed Murfin is a retired minister, former RLS Foundation support group leader for northeast Florida and southeast Georgia, and now an active 82-year-old volunteer contact and advocate in the northwest Florida/southern Alabama area. He has had RLS all his life, remembering back as far as elementary school when he got in trouble for wiggling the desk in front of him and behind him because he was such a "fidgety kid."

I’ve had a lot of experience in working with people in my lifetime. About 15 years of this has been with volunteers within the RLS Foundation on several different levels, including my own volunteer roles. I outline this to show that this experience is widespread, resulting in my conclusion that volunteers are the key to the success of almost any movement. Yes, YOU, as a Foundation member, donor, board member, advocate, contact, support group leader or member of an RLS Foundation support group, are important to the overall restless legs syndrome community and to the general community in which you live. No matter on what level you volunteer, your importance stems from the fact that you are single-handedly and corporately raising the level of awareness of this terrible affliction called RLS. Of course our staff in Austin, Texas, are on the front-line and hold all this together, but they couldn’t do much of their work without the rest of us. I had a church member tell me once that I as their minister was paid to be good, but he as just a member was good for nothing – and yet his work and testimony was a hundred-fold times more effective than mine. And I had to agree with him. And I say that with a great deal of respect and appreciation for Karla and Hillary and Faith, as I had for all of their predecessors and will have for any that succeed them.

But I’m writing today to say that they can literally work their fingers to the nub, and they and the Board of Directors can make all kinds of statements and publish results of much research, but unless there are people out there where the RLS rubber hits the road, who walk in the night and who let themselves be known, who support the Foundation’s work with their memberships, who lead support groups and attend meetings, it will all be so much talk in the wind and so much ink on discarded paper.

Let me say how rewarding it is to be an RLS Foundation volunteer out in the trenches – whether you have 150 attendees coming to regular meetings or 15 or 5, or you simply provide support via phone or email. Picture this: Someone calls you after seeing your name in NightWalkers or a newspaper article, and they tell how disturbed they are or in how much pain they are in because they’re all alone suffering from “ants in their legs.” You let them know they’re not alone in your first few consoling words, and they call you an angel from heaven or at least a saint on earth for listening. You yourself have to pull yourself down off of Cloud Nine. You do feel important, as if you’ve just saved a life – and you may very well have done that.

I know I was a helpful part of saving a young lady’s life once. Her mother told us the girl had tried to commit suicide several times before she brought her to our RLS support group meeting. The high school senior has been diagnosed as having ADHD most of her life because she was such a fidgety person. Through the years she had been given tons of the traditional medicines normally given to ADHD patients. To make a long story short, her mother had seen our announcement in the paper and thought it was a long shot, but maybe her daughter had what we were talking about. Our speaker that day recognized all the symptoms in this girl, and knew that she did not have ADHD, but instead had a full-blown case of RLS and PLMS. Those medications she’d been taking were absolutely working against her. We worked together and changed the girl’s life; she graduated from high school at the top of her class, and instead of later planning her funeral, her family was celebrating a college graduate who was achieving honors in her life. Had our group not been meeting at the place and time we were, that story may have been quite tragically different. We would’ve never known about the opportunity we missed in saving her life.

That one event bolstered my dedication to continue volunteering to support the RLS Foundation, and reach out to RLS sufferers wherever they are and in whatever way I can as long as I can. Someone was there for me when I reached out in desperation way back in 2002, when I called the RLSF office in Minnesota and said I needed help. She recognized my need, capabilities and level of influence, and invited me to become a Foundation support group leader in Jacksonville, Florida... That changed my life. I got relief from my RLS which I had from childhood, and it set me on a path to be the help I have been to the RLS community.

I began to form a group with the help from the RLS Foundation for the northeast Florida and southeast Georgia area. I started publicizing and then holding meetings for a handful of people. It gradually grew to 20 or 30 attendees at each meeting, and twice close to 100. I was learning as much as those who were attending. Soon, I knew more than my doctor did about RLS and he didn’t particularly like it – especially when I told him that the medication he was giving me was no longer recommended and it was giving me problems with augmentation. I wanted referral to a specialist who might know more. I followed up on the referral which resulted in a new medication, and as they say, “the rest is history.”

I am dedicated to raising RLS awareness and raising the quality of life for all. I am now 82 years old, and Bev and I recently celebrated 61 years of married bliss (even though I’ve kicked her out of bed many a night). We have two sons, four grandchildren, and two great-granddaughters. I retired from being support group leader several years ago, and graduated to being a volunteer contact. In 2016 we moved from Jacksonville 360 miles due west on I-10 to Milton, Florida, just north of Pensacola, in Florida’s western Panhandle south of Alabama. We are now enjoying life just a few miles from one of our sons and one granddaughter and the two great-grands. I continue in my role of contact for the RLS Foundation, and am hoping to get a support group started somewhere in this area (where there has never been one). As you can see, RLS has shaped and re-shaped my life and continues to be a part of it.

It is imperative to exercise your influence by supporting your local support group leader or becoming one. You just never know whose life might change as a result of your dedication. If your area has a group but no leader (as is the case in several places in Florida), step up to the plate and hit that RLS ball out of the park. You are needed. If your responsibilities are such that you can’t handle monthly or quarterly meetings, work on a well-publicized once-a-year gathering with good speakers in a good location. I and the other Foundation volunteers and staff stand ready to assist you, and make whatever you do a success. You will feel good about yourself and what you accomplish, and those that will be blessed will be many.

If you are in west Florida, southern Alabama, or nearby Mississippi (but really, anywhere) I am but a phone call or an email away (850-564-0266 or – and so are the others. Let us help you help others. Let’s raise the awareness level of RLS way above the laughing level it is sometimes, to the serious level it needs to be so that we can say we were a part of the solution and not of the problem. This way we WILL see a CURE in our lifetime.

It’s time we work on this in a united way. If you are reading this piece then you are a part of the solution. Volunteer to lead a group – get a co-leader if necessary – plan to meet at least once a year, and maybe have an evening walk of RLS people ("Night Walkers") to help raise the awareness of this incredibly debilitating disease and to help your fellow sufferers. We can’t afford to let this one slip. There are a lot of causes to support out there, folks, and no one except those who suffer from RLS is going to fight our battles for us.

Interested in making a difference and joining the RLS Foundation volunteer team? Visit our website to learn more about how to apply!

Stay up to date with all upcoming RLS Foundation support group meetings on our website or Facebook page. All volunteer support group leaders and contacts are available via phone or email to provide support. Search by city or state to find one near you!

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