sardsy75 wrote:jumpyowl wrote:If worse comes to worse I hope I can find a volunteer who will present the paper. Any takers?It would not be unsurmountable, as the slides are almost self-explanatory.
Iin that case the ticket and hotel reservation is lost but at least I tried...., tried very hard. And I am still trying...!
Wish me luck and those so inclined, please pray.
Not so vivacious but still jumpy OWL!
Jumpy!!
My dear friend, if I could find a way to get there and do the presentation I would ... heck i'm sure the travel consultants sitting just 10 feet away from me could have it organised this afternoon.
However, I know that there are a number of our members going to the National Meeting ... surely there is someone amongst us who is willing to help Jumpy out if it turns out he is unable to make it??
We have spent a LOT of time and effort on this project ... too much to let a good opportunity go to waste.
Is there someone out there who is going to the meeting who can assist Jumpy if the need arises??? One of our "family" needs our help!!!
PLEASE READ-PLEASE READ-PLEASE READ
Time for our family to assist a member in need
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
-
ViewsAskew
- Moderator
- Posts: 16583
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Huh?
Nadia, thanks for moving that to this thread, as I didn't read the thread in which this was posted.
Jumpy, I design, develop, and deliver training, so should be able to handle the presentation, and I will be at the conference. If there is a need of some kind, Jumpy, please let me know. Hopefully, all well be better with you and your family, though.
Ann
Jumpy, I design, develop, and deliver training, so should be able to handle the presentation, and I will be at the conference. If there is a need of some kind, Jumpy, please let me know. Hopefully, all well be better with you and your family, though.
Ann
Dear Ann:
You are a fairly new poster and I have been not very diligent latelyin posting. 
Still I am grateful for your offer. Could you send me your e-mail address
privately, I will do the same. Also your full name, address and occupation. One more thing (optional). I would very much appreciate if you could electronically send me your photo as I would like to "see you." Some time ago some of us exchanged photos here, du to the fact that some of us are highy visual.
I will send you one of mine,, of course, too.
Then we shall take it from there. Time is short, so please do it today.
I think I can send you enough info ad I could be on the telephone (cell phone?) at the end of your presentation for soem tricky questions. I will re-design some of the slides which are a bit crowded (three-in-one), and will weed out some.
Also I will send you some notes and comments for your eyes only so you can par some questions. Will prepare a new title slide.
Need your full name, and address.
Do you have MICROSOFT POWER POINT on your computer?
There is a chance I am still coming. But It will not hurt for you to be prepared.
Still I am grateful for your offer. Could you send me your e-mail address
privately, I will do the same. Also your full name, address and occupation. One more thing (optional). I would very much appreciate if you could electronically send me your photo as I would like to "see you." Some time ago some of us exchanged photos here, du to the fact that some of us are highy visual.
I will send you one of mine,, of course, too.
Then we shall take it from there. Time is short, so please do it today.
I think I can send you enough info ad I could be on the telephone (cell phone?) at the end of your presentation for soem tricky questions. I will re-design some of the slides which are a bit crowded (three-in-one), and will weed out some.
Also I will send you some notes and comments for your eyes only so you can par some questions. Will prepare a new title slide.
Need your full name, and address.
Do you have MICROSOFT POWER POINT on your computer?
There is a chance I am still coming. But It will not hurt for you to be prepared.
Jumpy Owl
-
ViewsAskew
- Moderator
- Posts: 16583
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Sure
Jumpy, I will email you privately. I do have PowerPoint as I often use it for my clients.
Ann
Ann
-
ViewsAskew
- Moderator
- Posts: 16583
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Easy to do this
Lyndarae, I'm glad to do it and happy I decided to go at the last minute. Serendipity is always fascinating. I'm also gratified that Jumpy is willing to entrust his careful research to a newcomer should the need arise, no matter how much experience I may have with PowerPoint and audiences! It's always hard to let someone else be involved with your "children." 
In seriousness, it's an honor to be involved at all with this; we truly have an opportunity to make a difference.
In seriousness, it's an honor to be involved at all with this; we truly have an opportunity to make a difference.Ann
Thankyou sooooo much for offering to help not only Jumpy, but our entire "family" out with this.
Sending you BIG (((((HUGS))))) of thanks from the down-under-side of the planet...
Take care!
Thankyou sooooo much for offering to help not only Jumpy, but our entire "family" out with this.
Sending you BIG (((((HUGS))))) of thanks from the down-under-side of the planet...
Take care!
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
THE MEETING
I hate to disappoint everyone but I came exhausted home late. Had to take care all kind of problems. THEN discovered that for my BIG INTERNATIONAL MEETING I have to leave home at 2:00 a.m. (2 hours , three hours wait at the airportdrive to the airport, plain leaves at 7:30 for Atlanta, where I have to wait 1.5 hoursa then onto Puerto Rico.
My stuff has to be prepared. My wife does not konow I am going but was talking to killing either me or herself because my daughter could not get her medication becausethey could not drive to Greenfield to pick it up fro, the D=FederaL EXPRESS oFFICE.
ANYWAY:
A checked in Friday afternoon, the reception originally was to be held at 7-9, but they brought it forward, I was told that somebody was going to speak between 7-9. Whe I asked who, she looked it up and said some called Frank Holly (she just handed me my registration).
Anyway, after asking somebody to at least announce it at the reception, 10 minutes before seven, they did. I asked for a projectior. They delivered it. I played with it. Did not show my animation and the colors l,looked a bit different, but it sufficed.
It was a fairly good sized room and it was packed. Ten-20 minutes into the talked they hat to bring more chairs in.
BeCat started the tack. It was the best part and laid an excellent foundation. I am not such a good speaker as her, so it was a let down especially when I got excited and wandered away from the microfone. But I felt and saw that on occasion the audience responded, even warmly, the lides were pretty colored, some times too many things on them, the important thimgs I spelled out. I will publish the text of the slides and the numbers on the next posat so please do not answer this until that show up.
The audience I think was all RLS paitient and of course they agree with me. There was no faculty. They were not notified. I will send the individually, two already gave me their e-mail address. Of course, those who this was written, the practicimoers, will not read it for a while.
So this should be given at the AMA meeting ot continuing cours in my never humble opinion.
Rubyslipper was there and now she is a groupleader, (congrutaulation, Kathy) Becat of course was there and Anne, nice friendlygroup as we expected Also Mike from the chat group. In retrospect, either BeCat or possibly Ann should have given translated my talk to the this audiencek, they both speak so much better English.
Now remember, wait with the answer until I copy and paste (no slides): only the titles and content (numbers, words)
My stuff has to be prepared. My wife does not konow I am going but was talking to killing either me or herself because my daughter could not get her medication becausethey could not drive to Greenfield to pick it up fro, the D=FederaL EXPRESS oFFICE.
ANYWAY:
A checked in Friday afternoon, the reception originally was to be held at 7-9, but they brought it forward, I was told that somebody was going to speak between 7-9. Whe I asked who, she looked it up and said some called Frank Holly (she just handed me my registration).
Anyway, after asking somebody to at least announce it at the reception, 10 minutes before seven, they did. I asked for a projectior. They delivered it. I played with it. Did not show my animation and the colors l,looked a bit different, but it sufficed.
It was a fairly good sized room and it was packed. Ten-20 minutes into the talked they hat to bring more chairs in.
BeCat started the tack. It was the best part and laid an excellent foundation. I am not such a good speaker as her, so it was a let down especially when I got excited and wandered away from the microfone. But I felt and saw that on occasion the audience responded, even warmly, the lides were pretty colored, some times too many things on them, the important thimgs I spelled out. I will publish the text of the slides and the numbers on the next posat so please do not answer this until that show up.
The audience I think was all RLS paitient and of course they agree with me. There was no faculty. They were not notified. I will send the individually, two already gave me their e-mail address. Of course, those who this was written, the practicimoers, will not read it for a while.
So this should be given at the AMA meeting ot continuing cours in my never humble opinion.
Rubyslipper was there and now she is a groupleader, (congrutaulation, Kathy) Becat of course was there and Anne, nice friendlygroup as we expected Also Mike from the chat group. In retrospect, either BeCat or possibly Ann should have given translated my talk to the this audiencek, they both speak so much better English.
Now remember, wait with the answer until I copy and paste (no slides): only the titles and content (numbers, words)
Jumpy Owl
Aqui tiene
LECTURE “LIFE WITH RLS”
List of Slides
Slide 1 LIFE WITH RLS
Diagnosis and Treatment
from the Patient’s Point of View
(Title slide)
Slide 2
Some facts about the Survey
This lecture is based on a survey originated on the Discussion Board of the RLS Foundation
with the support of a spontaneously formed group of enthusiastic RLS sufferers highly active
in providing help to new comers and to each other.
The construction and distribution of the preliminary questionnaire were paralleled by a successful attempt
by Lynne Kaiser to solicit and receive personal stories of RLS sufferers. This provided a treasure house of
information on the lives of RLS patients seldom available to the public or health care professionals.
It was decided to conduct a survey to obtain factual support for the impressions gathered from six months of
idea and information exchange on the board.
Slide 3 Survey Participants and Goals (N = 120 participants)
Patients active on the Discussion Board of the RLS Foundation
Members of Various Support Groups of the RLS Foundation
Others Recruited by words of mouth via the Above.
Assess history of diagnosis, symptoms, and associated afflictions
Assess effectiveness and method or lack of treatment
Major causes of morbidity, exacerbating factors, affect quality of Life
Slide 4 Age and Gender Distribution of Participants (Mostly female – 81% between the age of 18 to 84 yrs.)
Slide 5 Geographical Locations of Participants
(East Coast + Mid West and South East = 70%; South East = Canada; North West = South West, also Europe and Australia)
Slide 6 Distribution of Patients according to Undiagnosed Time Period
(only 11% diagnosed in the first year, 65% took longer than 10 years to diagnose, 44% took more than 20 years to diagnose, one took 72 (!) years to diagnose)
Slide 7 Various Types of Sensation and Pain in RLS Patients
(distinguished five different types of unpleasant sensations: the most frequent was creepy-crawly -77%-, the least frequent was molten lead -2%-, also five types of pain, the most frequent was deep pain at 72 %, the least was pressive pain at 5% frequency.)
Slide 8 Sensation and Pain at Various Body Locations
(Most frequent was the legs with 98/86 per cent for sensation/pain. Arms were 50/26. Then a “frequency reversal” took place: at the lower back and feet the sensation and pain frequency ratio reversed to 16/28 and 6/32 indicating that at these locations pain of another source is present - which is not hard to believe.)
Slide 9 Motion and Time Dependence of Pain compared to Sensation (Twice as many reported pain diminished by motion, also twice as many reported intermittent rather than chronic pain).
Slide 10 Other Possibly Related Health Problems to RLS [PLMD: 67% severe, 20% mild, No medium; Insomnia: 11% less than 3 hrs sleep, 26% more than 6 hours, 63% between 3 and 6 hours of sleep; hormonal problems: thyroid (21%) hysterectomy (32%) menopausal (30%), none (38%)]
Slide 11 Other Health Problems with Possible Relevance to RLS (sleep apnea – 22%, fibromyalgia – 11%, narcolepsy – 4%, alcohol addiction none at present, 9% in the past)
Slide 12 Who Diagnosed the Participant?
(self = 48%, doctor or doctor and self = 47%, family = 3%, friend = 2%)
Slide 13 Diagnostic Tests Conducted on Participants Relevance to RLS (none = 45%, sleep test = 27%, nerve conduction test = 16%, etc.)
Slide 14 Medical Specialties most Successful in Treating RLS Patients (neurologist – 40%, GP 38%, sleep dr. – 17%, …. rheumatologists – none!)
Slide 15 Severity of RLS in Participants
(daily 70%, refractory 16%, intermittent 14%)
Slide 16 Past and Present Prescriptions Prescribed to Participants (Dopamine agonists 53/49; Anticonvulsives 51/34, Sedatives 29/27. Analgesics 219/24, antidepressants, 25/ 34
Slide 17 Change in Frequency of Prescriptions per person
(Dopamine: -4; Anticonvulsive: -17; Sedative: -2; analgesic: +5; none -1; antidepressant: +9.
Slide 18 Variety of Medications Prescribed per Patients none = 3, one = 40, two = 43, three = 43, four and more = 7
Slide 19 Dope Agonists versus Dope Antagonists in Treatment of RLS (54% dope agonist, 34% antidepressant)
Slide 20 Patient-Drug Interaction in RLS Patients (augmentation=54%, rebound effect=20%, neither=27%)
Slide 21 Bodily Changes as a Result of Therapy (weight gain=54%, arrhythmia=18%, Hypotension=9%, Sleep up=50%, down 21%)
Slide 22 Various Factors affecting RLS Symptoms (exercise 51% up, 25% down; caffeine 53% same, 47% worse; alcohol 14% same, 72% worse)
Slide 23 Changes in Patients Condition after Treatment (better 75%, same 18%, worse 7%)
Slide 24 Major Causes of Morbidity among Participants (Fatigue 85%, Pain 52%, Paresthesia 41%, Insomnia 23% Narcolepsy 4%, PMLD 1%)
Slide 25 Quality of Life of Participant at Present (Poor 42%, Moderate – 43% Fairly good 15%)
Slide 26 Others in the Family of the Participants with RLS (85% familial or primary!)
Slide 27 The Dilemma of RLS I.
Gap in communication and resulting confusion between doctors and patients.
Patients are often diagnosed decades later.
Visits to several (up to 12) doctors needed for correct diagnosis.
Self diagnosis by patients are not rare.
Sometimes affliction is never diagnosed.
Even if RLS is diagnosed, the treatment is often not up to par. More often than not, the attending physician (G.P - 38 %) is out of his/her depth.
Slide 28 The Dilemma of RLS II
The medications required, for an ”off label” use yet (!), (anti-Parkinson, anti-epileptic, opioids, and sedatives - except for anti-depressants which is usually the type of drug offered), are rarely
prescribed by the family doctor, it is the job of a specialist.
The major causes of morbidity: fatigue, pain, paresthesia, and insomnia cannot be presented convincingly by the patient especially if the doctor is ambivalent, disbelieving, or outright questioning the patient’s judgement.
Lack of definite methods of diagnosis, sleep laboratories focusing on sleep apnea exclusively, poor understanding and rare use of ferritin tests, hopelessness on the patients’ part who after possibly several decades of trying, are about to give up, all adds up to a vicious circle from where there seems to be no way out.
Slide 29 Some Final Suggestions
Learn as much as you can about your affliction. RLS Foundation website is an excellent place to start.
If insomnia is one of your problems. Keep a diary. Show it to your doctor.
Take someone close to you who understands your problem (spouse, adult offspring, etc) to your doctor (gate keeper) for support.
Learn about anti-depression medications. If your depression is secondary to RLS, be firm about rejecting the medication. If however, you feel that you need help in that area, make sure that the medicine prescribed is one of those that is not a dopamine antagonist.
If switching doctors, make use of the list of specialists on the RLS Foundation web site.
Be patient and persistent, there is a best “cocktail” for eeryone, but one has to work hard with the doctor to put it together. .
This is vey hard to read. If any one of yopu have a powerpoint I will be happy to send the slide show, which is self explanatory in color and has all the graphs or charts.
The best I can do in such a shrt ti,e. Sorry.
I am sure BeCat will comment perhaps Rubyslipper and Anne as well.
List of Slides
Slide 1 LIFE WITH RLS
Diagnosis and Treatment
from the Patient’s Point of View
(Title slide)
Slide 2
Some facts about the Survey
This lecture is based on a survey originated on the Discussion Board of the RLS Foundation
with the support of a spontaneously formed group of enthusiastic RLS sufferers highly active
in providing help to new comers and to each other.
The construction and distribution of the preliminary questionnaire were paralleled by a successful attempt
by Lynne Kaiser to solicit and receive personal stories of RLS sufferers. This provided a treasure house of
information on the lives of RLS patients seldom available to the public or health care professionals.
It was decided to conduct a survey to obtain factual support for the impressions gathered from six months of
idea and information exchange on the board.
Slide 3 Survey Participants and Goals (N = 120 participants)
Patients active on the Discussion Board of the RLS Foundation
Members of Various Support Groups of the RLS Foundation
Others Recruited by words of mouth via the Above.
Assess history of diagnosis, symptoms, and associated afflictions
Assess effectiveness and method or lack of treatment
Major causes of morbidity, exacerbating factors, affect quality of Life
Slide 4 Age and Gender Distribution of Participants (Mostly female – 81% between the age of 18 to 84 yrs.)
Slide 5 Geographical Locations of Participants
(East Coast + Mid West and South East = 70%; South East = Canada; North West = South West, also Europe and Australia)
Slide 6 Distribution of Patients according to Undiagnosed Time Period
(only 11% diagnosed in the first year, 65% took longer than 10 years to diagnose, 44% took more than 20 years to diagnose, one took 72 (!) years to diagnose)
Slide 7 Various Types of Sensation and Pain in RLS Patients
(distinguished five different types of unpleasant sensations: the most frequent was creepy-crawly -77%-, the least frequent was molten lead -2%-, also five types of pain, the most frequent was deep pain at 72 %, the least was pressive pain at 5% frequency.)
Slide 8 Sensation and Pain at Various Body Locations
(Most frequent was the legs with 98/86 per cent for sensation/pain. Arms were 50/26. Then a “frequency reversal” took place: at the lower back and feet the sensation and pain frequency ratio reversed to 16/28 and 6/32 indicating that at these locations pain of another source is present - which is not hard to believe.)
Slide 9 Motion and Time Dependence of Pain compared to Sensation (Twice as many reported pain diminished by motion, also twice as many reported intermittent rather than chronic pain).
Slide 10 Other Possibly Related Health Problems to RLS [PLMD: 67% severe, 20% mild, No medium; Insomnia: 11% less than 3 hrs sleep, 26% more than 6 hours, 63% between 3 and 6 hours of sleep; hormonal problems: thyroid (21%) hysterectomy (32%) menopausal (30%), none (38%)]
Slide 11 Other Health Problems with Possible Relevance to RLS (sleep apnea – 22%, fibromyalgia – 11%, narcolepsy – 4%, alcohol addiction none at present, 9% in the past)
Slide 12 Who Diagnosed the Participant?
(self = 48%, doctor or doctor and self = 47%, family = 3%, friend = 2%)
Slide 13 Diagnostic Tests Conducted on Participants Relevance to RLS (none = 45%, sleep test = 27%, nerve conduction test = 16%, etc.)
Slide 14 Medical Specialties most Successful in Treating RLS Patients (neurologist – 40%, GP 38%, sleep dr. – 17%, …. rheumatologists – none!)
Slide 15 Severity of RLS in Participants
(daily 70%, refractory 16%, intermittent 14%)
Slide 16 Past and Present Prescriptions Prescribed to Participants (Dopamine agonists 53/49; Anticonvulsives 51/34, Sedatives 29/27. Analgesics 219/24, antidepressants, 25/ 34
Slide 17 Change in Frequency of Prescriptions per person
(Dopamine: -4; Anticonvulsive: -17; Sedative: -2; analgesic: +5; none -1; antidepressant: +9.
Slide 18 Variety of Medications Prescribed per Patients none = 3, one = 40, two = 43, three = 43, four and more = 7
Slide 19 Dope Agonists versus Dope Antagonists in Treatment of RLS (54% dope agonist, 34% antidepressant)
Slide 20 Patient-Drug Interaction in RLS Patients (augmentation=54%, rebound effect=20%, neither=27%)
Slide 21 Bodily Changes as a Result of Therapy (weight gain=54%, arrhythmia=18%, Hypotension=9%, Sleep up=50%, down 21%)
Slide 22 Various Factors affecting RLS Symptoms (exercise 51% up, 25% down; caffeine 53% same, 47% worse; alcohol 14% same, 72% worse)
Slide 23 Changes in Patients Condition after Treatment (better 75%, same 18%, worse 7%)
Slide 24 Major Causes of Morbidity among Participants (Fatigue 85%, Pain 52%, Paresthesia 41%, Insomnia 23% Narcolepsy 4%, PMLD 1%)
Slide 25 Quality of Life of Participant at Present (Poor 42%, Moderate – 43% Fairly good 15%)
Slide 26 Others in the Family of the Participants with RLS (85% familial or primary!)
Slide 27 The Dilemma of RLS I.
Gap in communication and resulting confusion between doctors and patients.
Patients are often diagnosed decades later.
Visits to several (up to 12) doctors needed for correct diagnosis.
Self diagnosis by patients are not rare.
Sometimes affliction is never diagnosed.
Even if RLS is diagnosed, the treatment is often not up to par. More often than not, the attending physician (G.P - 38 %) is out of his/her depth.
Slide 28 The Dilemma of RLS II
The medications required, for an ”off label” use yet (!), (anti-Parkinson, anti-epileptic, opioids, and sedatives - except for anti-depressants which is usually the type of drug offered), are rarely
prescribed by the family doctor, it is the job of a specialist.
The major causes of morbidity: fatigue, pain, paresthesia, and insomnia cannot be presented convincingly by the patient especially if the doctor is ambivalent, disbelieving, or outright questioning the patient’s judgement.
Lack of definite methods of diagnosis, sleep laboratories focusing on sleep apnea exclusively, poor understanding and rare use of ferritin tests, hopelessness on the patients’ part who after possibly several decades of trying, are about to give up, all adds up to a vicious circle from where there seems to be no way out.
Slide 29 Some Final Suggestions
Learn as much as you can about your affliction. RLS Foundation website is an excellent place to start.
If insomnia is one of your problems. Keep a diary. Show it to your doctor.
Take someone close to you who understands your problem (spouse, adult offspring, etc) to your doctor (gate keeper) for support.
Learn about anti-depression medications. If your depression is secondary to RLS, be firm about rejecting the medication. If however, you feel that you need help in that area, make sure that the medicine prescribed is one of those that is not a dopamine antagonist.
If switching doctors, make use of the list of specialists on the RLS Foundation web site.
Be patient and persistent, there is a best “cocktail” for eeryone, but one has to work hard with the doctor to put it together. .
This is vey hard to read. If any one of yopu have a powerpoint I will be happy to send the slide show, which is self explanatory in color and has all the graphs or charts.
The best I can do in such a shrt ti,e. Sorry.
I am sure BeCat will comment perhaps Rubyslipper and Anne as well.
Jumpy Owl
DEAR JUMPYOWL GOD BLESS YOU MATE, Without all the hours and love you have put into this mission it would not have happened. I am so grateful to you. You are in my thoughts and prayers everyday. And I have missed your wit and wisdom very much. The forum is my safe place to fall and that is only because of you and the others too many to mention you know who you are. You made me feel welcome and ansewered all my questions in a way I could understand and apply. You are a dear friend to me and I thank you very much~~~~~~~~~~~~~lyndarae