Monday, July 25, 2011

My Wish List

If you had two minutes to tell someone anything you wanted to about having RLS/WED, who would you tell and what would it be? Remember, you only have two minutes.

8 comments:

badnights said...

The hard part is figuring out who I would say it to. I feel like I have to figure out who has the greatest ability to generate funds for research on the disease.

I don't know who that is. But perhaps I can think what to say to him/her/....

Welcome! said...

Yeah, I guess this is harder than I thought. What I was geting at was for people to have a two minute (or less) "spiel" to give to anyone who showed interest in RLS/WED.

Generating funds is crucial right now. Not only to the Foundation but, as you said, for research. You would think that with this disorder as prevailent as it is, someone with funds to pass on would come through. Maybe it's because we have not convinced people how horrible RLS/WED truly is. Including those of us who have it. It is still hard for me to ask for donations and feel justified when there is cancer, Alzheimer's, etc. out there.

Mind set, it is the current mind set that needs to be changed before anything else will get done.

Evelyn Allen Harper said...

If I had just two minutes, I would hand that person my business card. On that card is my website, www,evelynallenharper.com

On my website they will find that I have written a serues of 3 books where the main character suffers from Restkess Leg Syndrome. I describe her nights, nights that are just like yours and mine. She calls them her 'leg demons' because she has no other name for them. A percentage of proceeds from the sale of the books go to RLS.

ragged sky said...

I have a neurological disorder called Willis-Ekbom disease. I get abnormal sensations in my arms and legs that are impossible to describe but are absolutely unbearable, and part of it is an overwhelming urge to move the limbs. If I don't move, it builds up and gets worse until an explosion of involuntary movement happens. The worst of this is, these symptoms get worse at night, and they're brought on by resting the muscles. So double whammy - just when you're most tired, just when you need rest the most, you have to MOVE, walk around, lift weights, dropping with exhaustion but you HAVE to because the sensations are overpowering and horrendous. The upshot is obvious when you think about it: no sleep, and all the consequences that come with that; loss of cognitive acuity, mistakes, depressed immune response, a devastating reduction in functioning and quality of life. WED sucks. Medication? Hit or miss, we fumble in the dark looking for things that work; what works for one doesn't work for the other or doesnt work the next month, and most of the drugs used for this disease are not specific for it & toy with our neurotransmitters so there are endless horrible side effects. We need research to be done on the physiological causes of this disease so that effective treatments can be developed. We need its severity to become recognized, to become common knowledge in medical circles.

ragged sky said...

I have a neurological disorder called Willis-Ekbom disease. I get abnormal sensations in my arms and legs that are impossible to describe but are absolutely unbearable, and part of it is an overwhelming urge to move the limbs. If I don't move, it builds up and gets worse until an explosion of involuntary movement happens. The worst of this is, these symptoms get worse at night, and they're brought on by resting the muscles. So double whammy - just when you're most tired, just when you need rest the most, you have to MOVE, walk around, lift weights, dropping with exhaustion but you HAVE to because the sensations are overpowering and horrendous. The upshot is obvious when you think about it: no sleep, and all the consequences that come with that; loss of cognitive acuity, mistakes, depressed immune response, a devastating reduction in functioning and quality of life. WED sucks. Medication? Hit or miss, we fumble in the dark looking for things that work; what works for one doesn't work for the other or doesnt work the next month, and most of the drugs used for this disease are not specific for it & toy with our neurotransmitters so there are endless horrible side effects. We need research to be done on the physiological causes of this disease so that effective treatments can be developed. We need its severity to become recognized, to become common knowledge in medical circles.

Anonymous said...

Ragged Sky has explained exactly how it is for a sufferer. There is little I could add except perhaps to try and explain how this disease affects every aspect of life both personal and social. Consider having to move regularly to the spare bedroom, consider when going out for a meal having to book a table next to the wall so you can stand up and do stretches while others eat. That can be pretty soul destroying. Then there is always getting an aisle seat at the cinema or the theatre, in church, so it is easy to slip out if necessary and stretch and walk - missing the show that you have paid for. Then we get to travel issues, on a plane, on a bus - driving the car when perhaps you'd prefer public transport, but you have to take the car so that you can stop and have a walk-about.

Polar Bear

Kathy said...

Wow! I am impressed with all the comments. Now I just wish and hope that someone will either ask you about it or you get the chance to tell them!

Anonymous said...

Yoga is really helpful for me.