Canadians with Narcolepsy
Question:
Hi Ali & sarah it would be great if you……and anyone else for that matter….. could write a short testimony about your experience wtih narcolepsy for the newsgroup website. Just write about what you went through before/after diagnosis..perhaps what you do to treat it. You can email to me at ta…@tpg.com.au (dont’ hit reply to this message because i dont’ often check the email addy i use for this.) — Beth in Australia =================== FAQ for alt.support.sleep-disorder can be found here http://www.anchorweb.com.au/sleepdisorders this site is a work in progress – feel free to submit info/articles "Ali Jane" <loc…@hotmail.com> wrote in message
news:xOEP9.112114$F2h1.40312@news01.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> Doctors can be so frustrating!!! Why do they not take us seriously when we > know there’s something wrong? My doctor ran every blood test he could think > of after I had bugged him about my sleepiness for a couple of years. He did > a sleep test, at a lab which, in my opinion, was poorly run and didn’t > follow up on me afterward. He never even offered to send me to a specialist! > It’s not as if he loses anything by giving me a referral. Once I get things > sorted out, I’m switching family doctors. > > the worst part was teachers were always saying that i needed more sleep > etc. > > i had teachers calling me ’sleepy’ and making comments about me, i had > kids > > laughing at me because i couldn’t laugh, i’d just collapse or bang my head > > against the desk (cataplexy), then as my grades started to drop i had my > mom > > screaming and yelling at me all the time. > That’s terrible! I was lucky, I never had cataplexy, I was just constantly > sleepy. My teachers would tell my parents I’m a great student but I sould > participate more. Frankly, it was too difficult to stay awake in class, let > alone give any input. At the end of high school, as pressure to perform > increased, I had a breakdown. I freaked out at a teacher and ended up in > Guidance, and they sent me home for 3 days. I spent those three days in bed, > and my dad was not pleased with it (he was angry at me, actually). > I did end up graduating and narrowly missed the honour roll (I had a 79.1 > average), and took a job at a hair salon. Of course, I couldn’t handle that > but nobody would listen there, either. After two months my boss and I agreed > I couldn’t handle the job, and my parents finally took the hint that there > was something very wrong. They gave me time to figure myself out, and for a > year and a half I babysat half days, which worked quite well. I was still > sleepy, but I was able to nap before work and then the kids kept me busy > enough to stay awake. > It’s definitely not easy to work with this, and a lot of people are simply > not willing to hear you out about your condition. Hopefully you have some > support from lose friends and family who can help you through all this. > > now that i > > have been officially diagnosed i make a point of telling people about > > narcolepsy. i really get a kick out of the looks/reactions when they ask > if > > it will ever go away of if i’ll ‘grow out of it’… > Isn’t that phrase obnoxious? I was actually considering getting a Medic > Alert bracelet that says i have narcolepsy. For some reason, it appears > (somebody prove or disprove this theory if you can) that if you just tell > someone about your condition, they brush it off as an exaggeration or > excuse, but if you have a bracelet people take it more seriously because it > must be serious for you to note it somewhere! People wear the bracelets for > heart conditions, severe allergies, diabetes, and so on. It would make sense > to me that narcolepsy (especially cataplexy) would be a suitable thing for a > bracelet, too. > I recently read a suggestion that cataplectics carry a card in their wallets > stating the condition, a brief description, and what people should do if it > occurs. As scary as it must be for the person who has the attacks, I imagine > a lot of people who have no idea what’s happening would really panic if they > saw someone collapsed and unable to speak. > I’m getting off topic now and rambling, so I’ll sign off now and await > comments from others. – Ali 
Response:
Doctors can be so frustrating!!! Why do they not take us seriously when we know there’s something wrong? My doctor ran every blood test he could think of after I had bugged him about my sleepiness for a couple of years. He did a sleep test, at a lab which, in my opinion, was poorly run and didn’t follow up on me afterward. He never even offered to send me to a specialist! It’s not as if he loses anything by giving me a referral. Once I get things sorted out, I’m switching family doctors. > the worst part was teachers were always saying that i needed more sleep etc. > i had teachers calling me ’sleepy’ and making comments about me, i had kids > laughing at me because i couldn’t laugh, i’d just collapse or bang my head > against the desk (cataplexy), then as my grades started to drop i had my mom > screaming and yelling at me all the time.
That’s terrible! I was lucky, I never had cataplexy, I was just constantly sleepy. My teachers would tell my parents I’m a great student but I sould participate more. Frankly, it was too difficult to stay awake in class, let alone give any input. At the end of high school, as pressure to perform increased, I had a breakdown. I freaked out at a teacher and ended up in Guidance, and they sent me home for 3 days. I spent those three days in bed, and my dad was not pleased with it (he was angry at me, actually). I did end up graduating and narrowly missed the honour roll (I had a 79.1 average), and took a job at a hair salon. Of course, I couldn’t handle that but nobody would listen there, either. After two months my boss and I agreed I couldn’t handle the job, and my parents finally took the hint that there was something very wrong. They gave me time to figure myself out, and for a year and a half I babysat half days, which worked quite well. I was still sleepy, but I was able to nap before work and then the kids kept me busy enough to stay awake. It’s definitely not easy to work with this, and a lot of people are simply not willing to hear you out about your condition. Hopefully you have some support from lose friends and family who can help you through all this. > now that i > have been officially diagnosed i make a point of telling people about > narcolepsy. i really get a kick out of the looks/reactions when they ask if > it will ever go away of if i’ll ‘grow out of it’…
Isn’t that phrase obnoxious? I was actually considering getting a Medic Alert bracelet that says i have narcolepsy. For some reason, it appears (somebody prove or disprove this theory if you can) that if you just tell someone about your condition, they brush it off as an exaggeration or excuse, but if you have a bracelet people take it more seriously because it must be serious for you to note it somewhere! People wear the bracelets for heart conditions, severe allergies, diabetes, and so on. It would make sense to me that narcolepsy (especially cataplexy) would be a suitable thing for a bracelet, too. I recently read a suggestion that cataplectics carry a card in their wallets stating the condition, a brief description, and what people should do if it occurs. As scary as it must be for the person who has the attacks, I imagine a lot of people who have no idea what’s happening would really panic if they saw someone collapsed and unable to speak. I’m getting off topic now and rambling, so I’ll sign off now and await comments from others. – Ali
Response:
ill be 19 in april. my family doc kept saying i was overexaggerating, and that it was just normal teenage hormones etc. that i wanted (and was!) sleeping all the time. somehow i didn’t think that falling asleep while driving and going from being an above average student then dropping to failing was normal. the worst part was teachers were always saying that i needed more sleep etc. i had teachers calling me ’sleepy’ and making comments about me, i had kids laughing at me because i couldn’t laugh, i’d just collapse or bang my head against the desk (cataplexy), then as my grades started to drop i had my mom screaming and yelling at me all the time. i really believe that teachers should be aware, and also learn ‘not to judge a book by it’s cover’. the student may have deeper issues such as problems at home etc. that are causing them to do/act poorly in school. now that i have been officially diagnosed i make a point of telling people about narcolepsy. i really get a kick out of the looks/reactions when they ask if it will ever go away of if i’ll ‘grow out of it’… sara :0) ***************** – Hide quoted text — Show quoted text -> > smart idea to look for answers on your own. if i didn’t do my own research > > and insisted to my family doc that this wasn’t normal ‘teenage hormones’ i > > wouldn’t be where i am today! > May I ask how old you are? I was never told that my problem was teenage > hormones, I was told that I stay up too late and party too much and that’s > why I was tired in school. If only they knew the truth! I think once I get > my diagnosis I’m going to have to go back to my school and visit with some > of the teachers I was close with and tell them what the doctor said. I think > teachers should be taught a little about sleep disorders as they are the > ones who see good kids falling asleep in class regularly. If teachers had > any idea about this, it could go a long way in helping diagnose those of us > who are struggling just to graduate, even though we are obviously > intelligent human beings. – Ali
Response:
> im sure macfarlane is one of the best as he works at the same clinic where i > go to see dr. harvey moldofsky who has been the greatest in making sure i > get on the right track.
Yes, Moldofsky and MacFarlane work together. I gather this is the best sleep lab in the country. So far I really like Dr. MacFarlane, and everyone I speak to says he’s wonderful. I’m really lucky I found his e-mail address when poking around the web for information! My own doctor was pretty useless, and it was only after my boss first threatened my job 6 weeks ago that I took matters into my own hands and started searching the web for information. > smart idea to look for answers on your own. if i didn’t do my own research > and insisted to my family doc that this wasn’t normal ‘teenage hormones’ i > wouldn’t be where i am today!
May I ask how old you are? I was never told that my problem was teenage hormones, I was told that I stay up too late and party too much and that’s why I was tired in school. If only they knew the truth! I think once I get my diagnosis I’m going to have to go back to my school and visit with some of the teachers I was close with and tell them what the doctor said. I think teachers should be taught a little about sleep disorders as they are the ones who see good kids falling asleep in class regularly. If teachers had any idea about this, it could go a long way in helping diagnose those of us who are struggling just to graduate, even though we are obviously intelligent human beings. – Ali
Response:
im sure macfarlane is one of the best as he works at the same clinic where i go to see dr. harvey moldofsky who has been the greatest in making sure i get on the right track. smart idea to look for answers on your own. if i didn’t do my own research and insisted to my family doc that this wasn’t normal ‘teenage hormones’ i wouldn’t be where i am today! i haven’t had a chance to look through the stuff here, but it provides a large listing of canadian sleep links etc. http://www.silentpartners.org/sleep/links/index.htm "Ali Jane" <loc…@hotmail.com> wrote in message
news:3IjP9.77050$E_.47955@news02.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> James MacFarlane at University of Toronto. I will be asking him more > questions when I see him, but in the meantime I’m the kind of person who > likes to look for answers on my own.
Response:
James MacFarlane at University of Toronto. I will be asking him more questions when I see him, but in the meantime I’m the kind of person who likes to look for answers on my own.
Response:
just curious- who’s your doc? "Ali Jane" <loc…@hotmail.com> wrote in message
news:Nf0P9.70855$yW.67142@news04.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> Thank you for your responses! My mother phoned me this morning about an > article she found in a seniors’ newspaper. There is a support group in North > York, which used to be part of the Sleep/Wake Disorders Society of Canada. > It now operates independantly and meets the second Monday of every month. I > just phones and spoke to the woman who runs it, and am very excited to know > I will be going to a meeting in the near future. She has also said that my > doctor is one of the best and is very well-liked by his patients. > Anyone who is interested in this support group for all sleep disorders can > call 416-225-1694. (I have been given permission to post this phone number > on the newsgroups. > > Does your employer have any kind of short term disability plan? > > If so, use it. > I work for a small company with 5 employees, so there is no big corporate > policy to protect me. Right now my employers have decided to hold off firing > me until I begin treatment so they can see if things improve. I’ll keep you > posted! – Ali
Response:
- Hide quoted text — Show quoted text -Ali Jane wrote: > Hello, > I am about to be tested for narcolepsy, and the doctor is pretty sure I have > it. I have had the symptoms my entire life but only recently was I able to > contact a sleep specialist to have this investigated. > I have yet to meet another narcoleptic in person. I am seeking a support > group in the Toronto area. I would very much like to speak with someone in > person who has gone through the things I am going through right now. At 24, > I am about to lose my job because I can no longer stay awake at work. I > would like to know about disability pensions and laws regarding this type of > disability, laws specific to people who live in Ontario. > I found a phone number for a support group for sleep disorders in a local > paper, but after leaving a message I have not had any response from them. > The Sleep/Wake Disorders of Canada organisation closed down September 27 > this year, so at the moment I am stranded without support for my specific > situation. > If there are any Canadians on the list who could help me out, I would > appreciate it. I have had many offers of advice from narcoleptics who do not > live in Canada, but as I am seeking information about specific local laws, I > really need somebody who at least lives in Canada, if not Ontario. Thanks > very much, and merry Christmas to everybody! – Ali
I don’t know of any support groups for narcolepsy, but you might call Toronto General and Sunnybrooke and check with them. If other Canadians are interested, the London Health Sciences Centre has a good web site of support groups at the following URL: http://www.lhsc.on.ca/programs/medgenet/a_sup.htm As for benefits, you qualify for sick benefits for three months from UIC and can get temporary disability from the Province of Ontario, or permanent from Canada Pension. Check out the provice’s web site at: http://www.gov.on.ca/ Does your employer have any kind of short term disability plan? If so, use it. The following link may also be usefull as a resource. http://www.talkaboutsleep.com/Info/KLW/SleepApnea1.htm If you find any resource group meeting for narcolepsy, could you post the information here? Narcolepsy is treatable and if your employer is aware of the problem and this fact, maybe you could take a short leave of absence until you are under control. Good luck on your treatment. Regards Lee in Toronto —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–== Over 80,000 Newsgroups – 16 Different Servers! =—–
Response:
Thank you for your responses! My mother phoned me this morning about an article she found in a seniors’ newspaper. There is a support group in North York, which used to be part of the Sleep/Wake Disorders Society of Canada. It now operates independantly and meets the second Monday of every month. I just phones and spoke to the woman who runs it, and am very excited to know I will be going to a meeting in the near future. She has also said that my doctor is one of the best and is very well-liked by his patients. Anyone who is interested in this support group for all sleep disorders can call 416-225-1694. (I have been given permission to post this phone number on the newsgroups. > Does your employer have any kind of short term disability plan? > If so, use it.
I work for a small company with 5 employees, so there is no big corporate policy to protect me. Right now my employers have decided to hold off firing me until I begin treatment so they can see if things improve. I’ll keep you posted! – Ali
Response:
Hello, I am about to be tested for narcolepsy, and the doctor is pretty sure I have it. I have had the symptoms my entire life but only recently was I able to contact a sleep specialist to have this investigated. I have yet to meet another narcoleptic in person. I am seeking a support group in the Toronto area. I would very much like to speak with someone in person who has gone through the things I am going through right now. At 24, I am about to lose my job because I can no longer stay awake at work. I would like to know about disability pensions and laws regarding this type of disability, laws specific to people who live in Ontario. I found a phone number for a support group for sleep disorders in a local paper, but after leaving a message I have not had any response from them. The Sleep/Wake Disorders of Canada organisation closed down September 27 this year, so at the moment I am stranded without support for my specific situation. If there are any Canadians on the list who could help me out, I would appreciate it. I have had many offers of advice from narcoleptics who do not live in Canada, but as I am seeking information about specific local laws, I really need somebody who at least lives in Canada, if not Ontario. Thanks very much, and merry Christmas to everybody! – Ali
Response:
In article <aRRO9.84625$F2h1.37…@news01.bloor.is.net.cable.rogers.com>, "Ali Jane" <loc…@hotmail.com> wrote: > I have yet to meet another narcoleptic in person. I am seeking a support > group in the Toronto area. I would very much like to speak with someone in > person who has gone through the things I am going through right now. At 24, > I am about to lose my job because I can no longer stay awake at work. I > would like to know about disability pensions and laws regarding this type of > disability, laws specific to people who live in Ontario.
I don’t know of any in Toronto, but a fairly famous science fiction editor (and a great person) has narcolepsy: Teresa Nielsen Hayden. Worst case, she’ll be in Toronto over labor day weekend 2003. She’s also wickedly funny and interesting. http://www.nielsenhayden.com/ Her email address is on her blog, linked from that page. — _Deirdre http://deirdre.net "Ideally pacing should look like the stock market for the year 1999, up and up and up, but with lots of little dips downwards…." – Wen Spencer on plotting a novel
