3 replies to this topic

[narcatfl]

I would like to see a support group in Fl and looking for others who want to help create or attend a group.
Is there anyone who has been to a Narcolepsy support group in Florida?
I'm in the west central part of FL, in the Tampa Bay area.


I have a suggested format for a meeting??? (Some may have seen a format like this before )

Welcome and guidelines (for a productive meeting to stay focused on Narcolepsy)

Welcome to FL Narcolepsy Support Group, We come to share our experiences, our strengths, and our hope! (What the problem is, how we feel and what we did to deal with it)

We do not discuss Politics or Religion.

We do not cross talk. (We want everyone to be able to finish their thought without being cut off, I know I'm really slow sometimes!)

Everyone is different and we can take what we like and leave the rest.

Please leave dominance and gossip @ the door. (It is a group effort and no one is in charge)

We do not give advice, but encouragement. (unless we are a doctor )

We try and focus the meeting to be about Narcolepsy and it's symptoms.

People and things we see and hear here, stays here.

If we could introduce ourselves by first name only, my name is _____


List of topics that we can share our experiences on that pertain to coping with Narcolepsy.

Eds, Sleep Paralysis, Nightmares, Understanding & Tolerance, Medications, Cataplexy, Hallucinations, Grief & Loss, Support Network, Jobs, Relationships, Hobbies & Recreation, Acceptance and Hope, Multiple Dx's, Talking to your Dr, Driving, Sleep hygiene, Public Awareness, etc

Also I think we could read the Guide to understanding Narcolepsy and the book Narcolepsy the funny disorder aloud in a group study. The Guide and the book cover a lot of topics.


Closing

Thank you for coming to FL Narcolepsy Support Group. We leave knowing we are not alone, knowing there are others, and coping and living with Narcolepsy, we can be hopeful and happy and somewhat awake!

Please remember people and things we see and hear here, stays here.

All are invited to inexpensive lunch/coffee after the meeting. (Unless the meeting had refreshments) ???



Types of meetings

1 Just PWN
2 PWN , friends and families
3 Doctor presentation and Q n A with PWN, family and friends
4 Speaker presents their journey in life with Narcolepsy
5 Family and Friends

Some thoughts;
Have someone at the meeting to volunteer to write down, how many in attendance, what the snacks are, what pamphlets or books requested and give what resource they can get them from. (ie, Narcolepsy Network, Sleep Foundation, etc)

Please let me know what anyone thinks! Let's get some meetings going!
Thanks,
Lily

[veillettecathy]

I would like to see a support group in Fl and looking for others who want to help create or attend a group.
Is there anyone who has been to a Narcolepsy support group in Florida?
I'm in the west central part of FL, in the Tampa Bay area.


I have a suggested format for a meeting??? (Some may have seen a format like this before )

Welcome and guidelines (for a productive meeting to stay focused on Narcolepsy)

Welcome to FL Narcolepsy Support Group, We come to share our experiences, our strengths, and our hope! (What the problem is, how we feel and what we did to deal with it)

We do not discuss Politics or Religion.

We do not cross talk. (We want everyone to be able to finish their thought without being cut off, I know I'm really slow sometimes!)

Everyone is different and we can take what we like and leave the rest.

Please leave dominance and gossip @ the door. (It is a group effort and no one is in charge)

We do not give advice, but encouragement. (unless we are a doctor )

We try and focus the meeting to be about Narcolepsy and it's symptoms.

People and things we see and hear here, stays here.

If we could introduce ourselves by first name only, my name is _____


List of topics that we can share our experiences on that pertain to coping with Narcolepsy.

Eds, Sleep Paralysis, Nightmares, Understanding & Tolerance, Medications, Cataplexy, Hallucinations, Grief & Loss, Support Network, Jobs, Relationships, Hobbies & Recreation, Acceptance and Hope, Multiple Dx's, Talking to your Dr, Driving, Sleep hygiene, Public Awareness, etc

Also I think we could read the Guide to understanding Narcolepsy and the book Narcolepsy the funny disorder aloud in a group study. The Guide and the book cover a lot of topics.


Closing

Thank you for coming to FL Narcolepsy Support Group. We leave knowing we are not alone, knowing there are others, and coping and living with Narcolepsy, we can be hopeful and happy and somewhat awake!

Please remember people and things we see and hear here, stays here.

All are invited to inexpensive lunch/coffee after the meeting. (Unless the meeting had refreshments) ???



Types of meetings

1 Just PWN
2 PWN , friends and families
3 Doctor presentation and Q n A with PWN, family and friends
4 Speaker presents their journey in life with Narcolepsy
5 Family and Friends

Some thoughts;
Have someone at the meeting to volunteer to write down, how many in attendance, what the snacks are, what pamphlets or books requested and give what resource they can get them from. (ie, Narcolepsy Network, Sleep Foundation, etc)

Please let me know what anyone thinks! Let's get some meetings going!
Thanks,
Lily

[veillettecathy]

I am moving to Ocala region in Florida from Maine where diagnosis and treatment is aimed at no treatment, fear of MD's prescribing stimulants such as Desoxyn even though I have suffered multiple injuries,fractures,sprains and countless falls from Cataplexy usually on my head or just in a heap or falling backwards hitting my head, shoulders etc on corner ogjects, I can n ot count all the auto accidents some which totaled my new vehicles and recently july 20th of this year but my MD stated " Well it was not a bad accident!" and years of high risk auto insurance which just about broke me. They all tried to diagnose me as "Mental" Seizures" Bipolar " and I was sent to multiple shrinks but not one of these shrinks could find a mental diagnosis. Then after years of my hypersomnia worsening and losing 4" of height at age 52, I was diagnosed with N/C, I worked as a RN for years and that is another long story of humilated microsleeps, falls and the ignorant uncaring nurses I worked with , so in 2008 I applied for SSDI online was granted it in 3 months. I still can not get a caring MD to listen to me here and I still retain my drivers license but I became so depressed I thought of suicide as I not only have to deal with severe N/C but also chronic pain from all my injuries . I am hopingthis will be a good move. I am thrilled to see a NN network support group as I need both this and a caring doctor who hopefully will prescribe Desoxyn as I am currently on Dexedrine 80mg. caps and 10 mg up tp 3 prn, but when I was in AZ I was on Desoxyn prior to my return to ME and it held my hypersomnia much better.
Any suggestions cause I can not bear seeing another no it all that know nothing.
Cathy Anderson

[CATxi]

is there any actually support groups where i can talk to people face to face? i see a theorpist, but id muchr ather talk to someone who understands. i live in polk county..

also i donth ave classic N. my main symptom is HH. and its horible