Restless Legs Syndrome (RLS) Discussion Board

It's Jan

Please excuse any typos or poor sentence structure. I'm going to "steal" Nadia's ending line--My dog "Willie" MUST have typed some of that post, because I WOULD NEVER have made some of those mistakes!!! LOL!!!

(I need to learn to proofread better, don't I!! Ha!)

Jan

Have a great day everyone!!!

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Welcome back, Becat, your trips sounds amazing. The ballooning, the family, the talks and connections made about RLS. Having family there who understood what you deal with must have been a help and relief in some ways.

I can't imagine the visual delight of ballooning, have always wanted to do it. Several year ago we gave my parents a flight for their anniversary. Mom was terrified & reluctant, but absolutely LOVED it - dad too. Someday...

Heron

It's Jan

Ditto to what Heron said about family knowing how you feel!!! That must be refreshing!!! I THINK my dad may have had RLS, but he's be gone a long time--1979, sooooo........ I'm so glad you had a great time!! You certainly deserved it after the year you've had!!! It must have been so peaceful, floating up among the clouds, kind of surreal, but wonderful! Wouldn't it be wonderful if we could take some kind of snapshot that would allow us to revisit times as magical as those you've just experienced just for a few minutes or seconds, just every so often? But, I guess that's what makes them so very special. Just know you've been greatly missed. I'm so glad you and yours arrived back safely. What would we (I) do without you?! Did you look at the moon? I'm sorry your legs bothered you in the car, but I know about the dancing feet, only I call them "happy feet"! Ha! But, the beauty of it all kind of makes it worth it, doesn't it? Now, rest, my friend, and think of where you've been and where you're going (November meeting). You're one of our champions, and we couldn't ask for a better one! Have a peaceful night!!

Love

Jan

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Hey, Becat--

You know I share the joy of others in having you home safe and sound and back with us.

Just briefly, I know how it is to break from family patterns when you feel you need to chart a different route. Good to share what you learn on that path, but you're right...pushing wouldn't improve the knowledge you're sharing, only maybe get everyone's back up. We all choose our own way and live with what comes along that way.

Personally, I'm sort of torn on whether I find it a relief to know others suffer and have suffered in my family-- or whether it's sort of discouraging, like I can't escape (which I guess is the case whether there's a genetic pattern or not.) Hmmm...

Sometimes it's nicer here, because we're all here ON PURPOSE to share about this specific thing. And with family, even those who also have RLS, sometimes it feels a little... "forced", I guess. (We're not big on doctors, either, or on talking about our ailments.)

Oh, and I love your hubby's style, helping your grandmother.

Glad you enjoyed yourself and know to appreciate these special moments. I have learned to savor things that same way, too. (Surprise, surprise!)

Hugs-- Sara

Becat--It's Jan

I have learned so much from you!! I remember someone calling you the "poet" when I first found this place. When we first "met" each other, I told you you painted "word pictures", remember? And, you do! Now, you just explained that what I was talking about was heart pictures! Wow! And, BTW, I would love to meet your Grandmother! Your whole family fascinates me! Your whole outlook on life fascinates me!! Yes, we ARE lucky to have each other, but, you know what? I'm the lucky one to have met you, Heron (are you as graceful as your name?), Angie (sweet Sole Baby), Sara (just an old-fashioned girl who is wise beyond her years), Ruby (I'll see YOU soon), Lyn (my sweet friend who sends me the funniest jokes and helps me keep my chin up), oh I just know I'm gonna leave someone out, Jumpy (even though at times, Jumpy, you probably wish you hadn't met me! Ha!), Elfrieda (my English Prof. friend who never corrects my grammer, but only cares about ME), Nadia (our great researcher and a good friend), Neph (than you sooooo much for shortening your name!) and I'm sure I've left someone out--I'm sorry, CRS!. But, not the least of which, Becat, who was the first to call me when I needed a friend. This place helps fix your RLS, but it also helps fix your soul. I love this place and in some small way, I hope I make a difference in someone's else's life and their fight aainst RLS. You know, part of what we get out of this is the blessing of "pasing it on". We get helped--we help others. Simple, isn't it? But, how many people really do that anymore.

Once more, good night Becat

Love you

Jan

bye

Brady,

Wow, not sure how to respond except with empathy. I've never had an addiction problem, so can't relate on those terms, but the dilema seems impossible. The risk a doctor takes in prescribing narcotics to an ex-addict seems too great to take. I'm not being judgemental, I'm just wondering how your doctor and you could justify the risk. How does she know you won't become addicted again? How do you know you won't, for that matter?

Have you tried different non-narcotic med combinations besides Mirapex? I wish you all the best, and hope you can find a solution. I also look forward to reading more responses on this subject. Best,

Heron

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bye

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I am glad you had a lot of fun! Some pain, too.

I have been thinking about you. Do you still plan to come to to <omg Beach?

For awhile it looked like I coud or should not go there. But now I cannot afford not going as my credibility is at stake among others.

I am exhausted and have to go to bed. Tomorrow, I will see a neurologist.

I have to tell you all that happened in the past two weeks. Nadia and I were holding down the fort. Decisions are made as we chat. Our group may get get our own room and hopefully a Powerpoint projector. Several group leaders hopefully will join us.

I would like to know approximately how many from this Bulletin Board will attend the meeting?

I have made 20+ graphs and will paste the list below. Now I just have to redate them as the numbers are increasing.

I am not making sense. Good Night! Chat with you later.

LIST OF FIGURES FOR THE LECTURE “LIFE WITH RLS”


Fig. 1 Age and Gender Distributon of Patients Surveyed

Fig. 2 Geographical Locations of Patients Surveyed

Fig. 3 Present Age and Years Undiagnosed as a Function of Age at On-set.

Fig. 4 Frequency of Sensation and Pain at Various Body Locations.

Fig. 5 Frequency of Various Types of Pain associated with RLS

Fig. 6 Duration of Pain

Fig. 7. Presence of Periodic Limb Movement in RLS Patients

Fig. 8 Sleep Deficiency in RLS Patients

Fig. 9 Medical Specialties Most Successful in Diagnosing & Treating RLS Patients

Fig. 10 Diagnosis Tests Conducted

Fig. 11 Severity of RLS in Surveyed Patients

Fig. 12 Frequency of Past and Present Prescriptions for Treating RLS

Fig. 13 Use of Dope Agonists versus Dope Antagonists in Treatment of RLS

Fig. 14 Condition of Patients under of after Treatment

Fig. 15 Number of Medications Taken per Patients

Fig. 16 Frequency of Augmentation and Rebound Effects

Fig. 17 Hormonal Problems in Female RLS Patients

Fig. 18 Exacerbating Factors for RLS Patients

Fig. 19 Quality of Life while under Treatment

Fig. 20 Other Family Members with RLS

Brady,

when I read your story being in the military in Canada, it sounded familiar to me and then I remembered: some time ago you posted in the English Ekbom Group. And why did I remember? Because you said something that I always have remembered, something very important to me, something I say to myself in difficult times. And that is the sentence: I try to be comfortable with being uncomfortable. So now you know that there is at least one person you helped with this expression and maybe even more people. I just wanted you to know that. Thanks
Corrie

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