Wednesday, September 14, 2011

Tell Me About It

September is RLS Awareness month. September 23 is National RLS Awareness Day. Many of us who suffer with this terrible disorder will be holding special support group meetings, contacting the mayor to inact RLS Awareness Day, sending letters to the editor of the local newspaper or putting information out wherever possible. So who is? What are you doing to promote Awareness Week/Day? Tell me about it.

There are people out there who work tirelessly as support group leaders; not an easy job! Some people watch the internet and respond quickly and loudly to negative or misleading information. Many support each other on facebook or the RLS Discussion board. Some people are very generous with donations and some send what they can. What do you do in the fight against RLS? Tell me about it.

Many people are barely hanging on and getting through the day (and night) takes everything they have. Some people volunteer for clinical trials that just might help find new medications or get us closer to a cure. As sufferers, we come from all spectrums and walks of life. How do you get along? Tell me about it.

There are also many people who suffer with RLS who do nothing. The people I am talking about could do something but choose not to. They are often quick to complain about the lack of medications, qualified doctors, not enough research, education, support...but do nothing to help these come about. I could be wrong. If I am, tell me about it.

RLS Awareness month comes every year. Every year is another opportunity to bring awareness to people who suffer but maybe don't know what they suffer with. It brings an opportunity to help educate and support all of us; sufferers, doctors, family and friends, the media and the world. So why do we wait for someone else to do something? Who is ultimately responsible for our well-being? There are people out there who truly cannot do anything but hang on. I do what I can in this fight not only for me and my family but for them. If this blog made you uncomfortable, then look again at your situation and see what you can do to help. If you have comments about what I wrote, tell me about it.

**The statements and opinions here are solely my own and I take full responsibilty for them**

Moon and Stars
Kathy

15 comments:

badnights said...

I didn't think I have done anything recently, but actually, I have. I was seeing a new doctor because my regular one was temporarily unavailable, and for some reason I said something like "don't get me going, I could talk forever about RLS" and he said, basically, "what would you tell me" - and he leaned back in his chair and listened. I was stalled at first, then I remembered what I had replied to your 2-minutes question, and I started with something like that. We ended up spending 20 minutes discussing the disease, what it's like to live with it, and looking it up in his online resources. He even asked me for more information! (He wanted a reference I had on melatonin and RLS that implies melatonin might be bad for RLSers to take).

wildflowercat said...

I dont know who to talk to about this but it seems significant to me. My husband who had severe RLS has a motorcycle wreck in March of this year. He sustained a brain injury which led to memory loss and other complications but I believe he is slowly recovering.
The odd thing to me is his RLS which previously ruled our life appears to be only a slight case now. He is on a much smaller dose of Mirapex and only seems to have very slight leg twitches if he needs a pill. Our course our life is very difficult now but at least we dont have the high dosages of drugs and its accompanying side effects to deal with. Anyone have any thoughts about this?

badnights said...

My thought is WOW I hope it lasts. A small blessing from a disaster. It's curious, and I haven't heard of anything like it before.

Anonymous said...

The smallest thing could make a difference to someone.... I have the RLS business card tucked into the front and rear windows of my car, just is case it may be seen by a sufferer who will note the web site and the discussion board and may find support and information.

Polar Bear

Kathy said...

Badnights--way to go! That's why I wanted people to think about what they might have to say, just in case the chance came up. There aren't many doctors who understand RLS/WED so if we get the chance to educate one we need to be ready! It might only be one doctor but I guarantee he will pass that info on to others. Having the business card in the windows of your car is another great idea.

Wildflowercat, I am so sorry to hear about your husband's accident. I will send good thoughts for his recovery and for you as his caregiver. It is interesting that his RLS is better. I wonder if some of the medications he is taking now might be helping the RLS. Some pain medications can cause symptoms to be better. Whatever the reason, I hope it continues. He does not need more problems than what he is facing now. Keep us posted on his recovery. Anything I can do to help, just let me know.

Donna McLellan said...

Kathy, I am catchng up your blog, and you have brought up one of my pet peeves. You cannot nor does anyone have any right to complain if they do not take action upon themsleves, even if you are just telling a family member, or
a another doctor, etc about RLS and what it is like to live with it. The devastation that it puts on outr lives is overwhelming. I also TOTALLY agree with your comment to wildflower about her husband's RLS. Pain meds are well documented to give lots of relief to RLs sufferers. Lots of people say that their RLs slows down or stops after they have a surgery, etc, that rquires pain meds afterward. In fact for me, narcotic pain meds are the ONLY thing that control my RLS, so what she said makes a lot of sense. I hope she sees this. I also would like to mention that the discussion board is there for support, as well as my 3 yahoo support groups for RLs and sleep disorders of all kinds. anyone interested for lots of discussion and help can email me at max321@comcast.net My boggest group has been going since 1997, and LOTS of long time, experienced members do post all the time. Just putting it out there. good blog submission. I hear complaints every day from people who will not do anything about awareness. It is like anything else, if you do not participate, even just a little bit, then there is no good resaon to complain. I will give exceptions to people are desperate for help and post for the first time on the FB wall or to a group, and are desperate for answers. But, for those of us who have a lot of awareness experience, there is absolutely no excuse not to get involved. My groups are really good about letter writing campaigns , and we are defintely some of the "loud" ones. :o) BUT, WE GET RESULTS all the time, as far as getting misleading info taken off the internet like the "fake cures". Those sites are the ones that I keep very close track of, as I i think they are pretty much very evil people trying to separate desperate people from their hard earned money.
These are also my personal opinions, and I take full responsilbility for them, as usual. Good post!!!!!

Kathy said...

Thanks, it's good to know someone is reading and getting something from them!

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