Laura Heal

Support Groups

19 posts in this topic

I know that there are support groups out there and I was wondering if anyone knows of N support groups in Alberta?

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I know that there are support groups out there and I was wondering if anyone knows of N support groups in Edmonton Alberta?

Hi Day Dream,

I'm sorry that you've not gotten replies yet from Edmonton. I started a support group last summer in the Washington DC area of the U.S. that is going strong. In great part because of the help that the online narcolepsy forums provide in spreading the word, we keep picking up new members. It was amazingly easy to get the group up and running, and has been of tremendous help to me personally. If you'd like to chat about starting your own group and how to do it, please just let me know! Good luck,

Saraiah

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In Canada we are still in the dark age. I don't even think there is a foundation to help narcoleptics here :( Rare are the people who knows *or are smart about* the disease.

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I was first diagnosed 18 years ago. When I was first diagnosed I shared the literature with my boss (15 years ago) and was surprised by the lack of understanding about this condition :( My Neurologist was able to set things straight but I was so shocked to find stigmatization out there. There is a very strong part of me that would like to go full force and advocate and educate on a larger scale but at this point I am finding that I need support myself so....

I have also encountered GPs who are really in the dark about N as well. I am really glad now as I have found a very very good doctor who is an expert in this field. We need more like him out there.

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Hi Day Dream,

I'm sorry that you've not gotten replies yet from Edmonton. I started a support group last summer in the Washington DC area of the U.S. that is going strong. In great part because of the help that the online narcolepsy forums provide in spreading the word, we keep picking up new members. It was amazingly easy to get the group up and running, and has been of tremendous help to me personally. If you'd like to chat about starting your own group and how to do it, please just let me know! Good luck,

Saraiah

Hey Saraiah thanks for the positive support!! Actually, in the back of my mind I secretly was thinking that if there was not a support group (which I suspect there is not) I might start one. Is it hard to get one started? How much time and energy (energy being big factor) is required? What did you find helpful and not so helpful in starting one up. I know how extremely important support is for PWN and for family members as well. I would love to hear about your experiences in starting one up.

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Hey Saraiah thanks for the positive support!! Actually, in the back of my mind I secretly was thinking that if there was not a support group (which I suspect there is not) I might start one. Is it hard to get one started? How much time and energy (energy being big factor) is required? What did you find helpful and not so helpful in starting one up. I know how extremely important support is for PWN and for family members as well. I would love to hear about your experiences in starting one up.

Hi Day Dream,

I was truly amazed at how easy it was to start a support group. Here's what I did:

Finding a few other people:

To get a first meeting to happen, I simply posted an inquiry under the appropriate states (in my case, Maryland, Washington DC, and Virginia) in the Narcolepsy Network forum's Support Group section. I asked whether there were just one or more people who would be interested in forming a support group in our area. If I had it to do over again, I would have also put that inquiry on other active online narcolepsy forums, including the Daily Strength narcolepsy forum, talkaboutsleep.com, BiteSizeLife.com, the People with Narcolepsy forum, and the National Sleep Foundation forum. And I bet there are more I haven't discovered yet.

In response to my first inquiry about people wanting to form a support group, three people responded to say that they'd like to meet. I asked each of them about their schedules, and what convenient times might be for them. I also plotted where each of the four of us lived on a map, and picked a town roughly in the middle. That way, each of us had to travel about the same distance. Since our first meeting was in the summertime, we ended up meeting at a picnic table in a park on a sunny day, where the kids who came could run and play while we talked. Other good and free places to meet might be at community centers or public meeting rooms in libraries which can be reserved.

Planning a Second Meeeting:

Since the four of us found the first meeting useful, we went ahead and planned a second meeting. I posted notices of the second and each later meetings on every online narcolepsy forum I could find.

I always try to be very careful to find meeting places that are free, handicap accessible, and also are convenient to public transportation (since that exists in my area). I want to remove as many barriers as possible that might keep other people with narcolepsy and hypersomnia from being able to attend the meetings.

There is a lot more to say about how to run meetings, etc. But perhaps that's enough of a good start for now. I think the most important thing to know is that you don't have to be a mental health professional, or an employee of a narcolepsy organization, in order to start a support group. All you need is caring and empathy for your fellow PWN, and a little bit of time and energy to plan and announce the times and locations of the group meetings. I've found that people who are comfortable sort of facilitating the group meetings tend to emerge, if that's not something you feel comfortable doing yourself.

And boy oh boy, is it just incredible to have in-person friends who also have narcolepsy!! It's transformed my life from being pretty lonely (around this whole disease issue) to having many people as role models for coping with the disease. I can't recommend it highly enough.

Please let me know if you have other questions! And good luck - I hope that it's a time of your life when you have the time and energy needed to find other PWN to meet and to talk with. For me, the energy required to arrange group meetings is more than paid back by the happiness, support, and ideas that come to me as a result of meeting in person with other PWN.

Cheers,

Saraiah

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Hi Day Dream!

I moved your topic into a new section 'Canada' within the Support groups area. I hope you find some neighbors! ~Good Luck :)

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Hi Day Dream,

I was truly amazed at how easy it was to start a support group. Here's what I did:

Finding a few other people:

To get a first meeting to happen, I simply posted an inquiry under the appropriate states (in my case, Maryland, Washington DC, and Virginia) in the Narcolepsy Network forum's Support Group section. I asked whether there were just one or more people who would be interested in forming a support group in our area. If I had it to do over again, I would have also put that inquiry on other active online narcolepsy forums, including the Daily Strength narcolepsy forum, talkaboutsleep.com, BiteSizeLife.com, the People with Narcolepsy forum, and the National Sleep Foundation forum. And I bet there are more I haven't discovered yet.

In response to my first inquiry about people wanting to form a support group, three people responded to say that they'd like to meet. I asked each of them about their schedules, and what convenient times might be for them. I also plotted where each of the four of us lived on a map, and picked a town roughly in the middle. That way, each of us had to travel about the same distance. Since our first meeting was in the summertime, we ended up meeting at a picnic table in a park on a sunny day, where the kids who came could run and play while we talked. Other good and free places to meet might be at community centers or public meeting rooms in libraries which can be reserved.

Planning a Second Meeeting:

Since the four of us found the first meeting useful, we went ahead and planned a second meeting. I posted notices of the second and each later meetings on every online narcolepsy forum I could find.

I always try to be very careful to find meeting places that are free, handicap accessible, and also are convenient to public transportation (since that exists in my area). I want to remove as many barriers as possible that might keep other people with narcolepsy and hypersomnia from being able to attend the meetings.

There is a lot more to say about how to run meetings, etc. But perhaps that's enough of a good start for now. I think the most important thing to know is that you don't have to be a mental health professional, or an employee of a narcolepsy organization, in order to start a support group. All you need is caring and empathy for your fellow PWN, and a little bit of time and energy to plan and announce the times and locations of the group meetings. I've found that people who are comfortable sort of facilitating the group meetings tend to emerge, if that's not something you feel comfortable doing yourself.

And boy oh boy, is it just incredible to have in-person friends who also have narcolepsy!! It's transformed my life from being pretty lonely (around this whole disease issue) to having many people as role models for coping with the disease. I can't recommend it highly enough.

Please let me know if you have other questions! And good luck - I hope that it's a time of your life when you have the time and energy needed to find other PWN to meet and to talk with. For me, the energy required to arrange group meetings is more than paid back by the happiness, support, and ideas that come to me as a result of meeting in person with other PWN.

Cheers,

Saraiah

Thanks Saraiah. This does not sound too difficult! It also just occurred to me that this group would have people like me with Narcolepsy and there would be a common understanding about energy and need for pacing one's self. I am starting to think that maybe in the summer time would be a good time to begin. Also my doctor can let his other patients know. I really heard from your response that there was a lot to gain from this kind of support so I think I can do this. Thanks again Saraiah for taking the time to encourage me.

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Hi Day Dream!

I moved your topic into a new section 'Canada' within the Support groups area. I hope you find some neighbors! ~Good Luck :)

Thanks

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Thanks Saraiah. This does not sound too difficult! It also just occurred to me that this group would have people like me with Narcolepsy and there would be a common understanding about energy and need for pacing one's self. I am starting to think that maybe in the summer time would be a good time to begin. Also my doctor can let his other patients know. I really heard from your response that there was a lot to gain from this kind of support so I think I can do this. Thanks again Saraiah for taking the time to encourage me.

Hi. My name is Rick and I'm a narcoleptic .... oopps, wrong tag line ...

I first became aware that something was 'not right' in 1987. Looking forward to meeting/interacting with others facing this issue. Please to let me know as you get the group going.

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Hi. My name is Rick and I'm a narcoleptic .... oopps, wrong tag line ...

I first became aware that something was 'not right' in 1987. Looking forward to meeting/interacting with others facing this issue. Please to let me know as you get the group going.

Hi RPM

I was thinking of getting a support group started in your local and you are the first that has responded on this post for this area. I am sure there are others in our area and wonder if you know other Ns in Edmonton. Please no names, just wondering if you know of others out there who are interested in forming a support group? I was also thinking of checking with my sleep doctor to see if he would check with his patients if they are interested in a support group. What do you think would be a good way to get the word out in our area?

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At one time we had a national network of self help groups in Canada for sleep disorders. I found it a great benefit to belong to a local group. It can be as formal or informal as you want.

An added benefit is that it can be a support and source of info for family and friends as well. Good luck to you in Edmonton.

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If anyone's still watching this forum in the Edmonton area, i'd like to hear from you.

I reckon the whole Narcolepsy and Cataplexy issue is an unknown gaping black whole within the medical community, and i'd like to know what others are doing to mange their symptoms.

I was diagnosed by an Edmonton Neurologist in June 2009 after having suffered for a looooong time with Cataplexy in the UK. I'm 34 now and it took a move to Canada from Scotland for someone to tell me why i was trying hard not to fall over when i laughed. I was diagnosed as having Narcolepsy with Cataplexy. For me it's mostly Cataplexy, but i have varying degrees of tiredness dependent on the situation; sitting around in meetings/in the car as a passenger or generally inactive means i want to zzzz.

The amazing thing for me was finding out the incredible tiredness i had felt since age 18 was not 'laziness' or lack of motivation, but rather something more interesting. Just a pity it took to age 34 to find out what it was.

So, i've been on medication since July 2009 and it's helped with the Cataplexy; however i HATE being medicated on a drug that was never designed specifically for the purposes of what it is being used for. I'd like to hear what others have experienced and what they're doing to manage the fight. It just occurred to me this evening that i've never had a conversation with a fellow narcoleptic so I'd be interested to make that happen :rolleyes:!

Cheers

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If anyone's still watching this forum in the Edmonton area, i'd like to hear from you.

I reckon the whole Narcolepsy and Cataplexy issue is an unknown gaping black whole within the medical community, and i'd like to know what others are doing to mange their symptoms.

I was diagnosed by an Edmonton Neurologist in June 2009 after having suffered for a looooong time with Cataplexy in the UK. I'm 34 now and it took a move to Canada from Scotland for someone to tell me why i was trying hard not to fall over when i laughed. I was diagnosed as having Narcolepsy with Cataplexy. For me it's mostly Cataplexy, but i have varying degrees of tiredness dependent on the situation; sitting around in meetings/in the car as a passenger or generally inactive means i want to zzzz.

The amazing thing for me was finding out the incredible tiredness i had felt since age 18 was not 'laziness' or lack of motivation, but rather something more interesting. Just a pity it took to age 34 to find out what it was.

So, i've been on medication since July 2009 and it's helped with the Cataplexy; however i HATE being medicated on a drug that was never designed specifically for the purposes of what it is being used for. I'd like to hear what others have experienced and what they're doing to manage the fight. It just occurred to me this evening that i've never had a conversation with a fellow narcoleptic so I'd be interested to make that happen :rolleyes:!

Cheers

Hey Stuaboard: Yes we are alive and well, (well somedays better than others)!!! Looks like a support network for Edmonton is in the plans with some details to work through and a start date for September. Welcome to the land of N..... I am looking forward to this support group as it is a place were people with N get a chance to encourage, share tips, laugh ( sitting down) and just relish in the fact that we are not crazy, we are not lazy, we are sometimes hazy but never without hope. Glad you connected on this site Stuaboard! Oh yah I too have N with C. Oh the joys.....of facial muscles drooping. Cheers

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Hi Day Dream,

I'm sorry that you've not gotten replies yet from Edmonton. I started a support group last summer in the Washington DC area of the U.S. that is going strong. In great part because of the help that the online narcolepsy forums provide in spreading the word, we keep picking up new members. It was amazingly easy to get the group up and running, and has been of tremendous help to me personally. If you'd like to chat about starting your own group and how to do it, please just let me know! Good luck,

Saraiah

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I was first diagnosed 18 years ago. When I was first diagnosed I shared the literature with my boss (15 years ago) and was surprised by the lack of understanding about this condition :( My Neurologist was able to set things straight but I was so shocked to find stigmatization out there. There is a very strong part of me that would like to go full force and advocate and educate on a larger scale but at this point I am finding that I need support myself so....

I have also encountered GPs who are really in the dark about N as well. I am really glad now as I have found a very very good doctor who is an expert in this field. We need more like him out there.

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In Canada we are still in the dark age. I don't even think there is a foundation to help narcoleptics here sad.gif Rare are the people who knows *or are smart about* the disease.

Sorry, but there is in Quebec! Foundation Sommeil (it's french and I'm english but they try really hard to get me information in english and offer resources) Google them.

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Well for all of you who are seeking support groups in Canada here it is! :D

 

  • Canada:
  1. Canadian’s With Narcolepsy: https://www.facebook.com/groups/canadian.narcolepsy.network/
  2. People With Narcolepsy in Niagara and Surrounding Area:https://www.facebook.com/groups/PWN.In.Niagara.And.Area/
  3. Narcolepsy Awareness In South Western Ontario:https://www.facebook.com/groups/284556971578939/
  4. Sleep Wake Disorders Association Of Toronto: https://www.facebook.com/groups/93388941079/
  5. Narcolepsy In Southwestern Ontario: https://www.facebook.com/groups/325073480929420/

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