Marcianna

Focus Group On Disabilities...

24 posts in this topic

I am attending a focus Group with Student Nurses from Tacoma Community College on the 28th of April.

We will be discussing medical issues and how nurses can be more aware of our needs as persons with disabilities. I am not sure how long I will get to talk as a representative of PWN's But please give me your feed back. What would you like me to try to get through? what are the issues that you are most concerned with? I wish I could have given you all more notice on this, but I just found out myself. Thank you! Your input is much Appreciated!!!

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Rule #1: We are not making it up! Don't dismiss our symptoms as psychological. Cuz they ain't.

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Rule #2: N has no effect on our intelligence, so don't talk to us like we're in kindergarten (unless we are :) )

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Rule # 3.

You can't catch my N/C. Ask questions...Im very happy to tell what I know. But don't treat me like a diease pls.

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Rule #4

If you don't understand this illness, go ahead and ask but never assume and make idiotic comments that are insensitive and dismissive. Comments like: oh, well we're all tired, I wish I could take a nap too.

Also, I really think you should impress upon professionals Rule #1:

Investigate, investigate, investigate and do not mimimize or dismiss a person who is clearly suffering as having a psychosomatic condition just because it doesn't show up in a routine blood test. When hearing sx with fatigue, sleepiness, passing out (could be cataplexy), for the love of God, order a sleep study before you start throwing psychological diagnoses around. It's ignorant and traumatizing for those of us who have been through that show, only to later find that we indeed have a chronic neurological illness. If you ask me, that kind of response from a medical professional is a form of malpractice, as it causes trauma and undue stress for the patient.

jenji

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Thank you to everyone who responded. It went very well!

The nurses were extremely interested in what we go through. Some of them had no idea what N was and were rather shocked about the cataplexy... It was a group discussion with about 25 people involved so it was difficult to talk about it much with out dominating the conversation. I actually figured it would be. So I made a point of making sure I gave them notes with all the information I could find....including the things you mentioned here.

Congratulate yourselves!

We just helped create better more aware medical professionals!

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Rule #4

If you don't understand this illness, go ahead and ask but never assume and make idiotic comments that are insensitive and dismissive. Comments like: oh, well we're all tired, I wish I could take a nap too.

Also, I really think you should impress upon professionals Rule #1:

Investigate, investigate, investigate and do not mimimize or dismiss a person who is clearly suffering as having a psychosomatic condition just because it doesn't show up in a routine blood test. When hearing sx with fatigue, sleepiness, passing out (could be cataplexy), for the love of God, order a sleep study before you start throwing psychological diagnoses around. It's ignorant and traumatizing for those of us who have been through that show, only to later find that we indeed have a chronic neurological illness. If you ask me, that kind of response from a medical professional is a form of malpractice, as it causes trauma and undue stress for the patient.

jenji

eloquent. I sometimes imagine you writing with a fluffy quill.

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Thank you to everyone who responded. It went very well!

The nurses were extremely interested in what we go through. Some of them had no idea what N was and were rather shocked about the cataplexy... It was a group discussion with about 25 people involved so it was difficult to talk about it much with out dominating the conversation. I actually figured it would be. So I made a point of making sure I gave them notes with all the information I could find....including the things you mentioned here.

Congratulate yourselves!

We just helped create better more aware medical professionals!

KUDOS TO YOU!

Thank you, Ms. Moderator Extraordinaire! You rose to the occasion, and it sounds as though you shone beautifully. Thank you so very much for doing this.

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Tell them they can test for a patient faking C or not by testing their reflexes. True C causes a patient to lose their reflexes, which you cannot fake. Then they'll know it's neurological, not psychological.

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Oh *BEEP* I missed it. Oh well. Maybe next time. crap

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eloquent. I sometimes imagine you writing with a fluffy quill.

..stop looking in my windows. :)

jenji

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Oh *BEEP* I missed it. Oh well. Maybe next time. crap

=) no worries! I am sure the oppurtunity will arise again!!

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Rule # 3.

You can't catch my N/C. Ask questions...Im very happy to tell what I know. But don't treat me like a diease pls.

I remember I had a short fling with a girl in Brazil. She was very nice. I miss her even. Kind of naive though .. as once she asked me about this "Narcolepsy" and whether it is definitely not contagious.

For which I replied, well not really ... only sexually :)

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I remember I had a short fling with a girl in Brazil. She was very nice. I miss her even. Kind of naive though .. as once she asked me about this "Narcolepsy" and whether it is definitely not contagious.

For which I replied, well not really ... only sexually :)

OH!!!! so that is how I caught it!!! from one of those LAZY bastards I use to date! ....... freakin figures!

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I remember I had a short fling with a girl in Brazil. She was very nice. I miss her even. Kind of naive though .. as once she asked me about this "Narcolepsy" and whether it is definitely not contagious.

For which I replied, well not really ... only sexually :)

drum roll "bah dum bump"

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OH!!!! so that is how I caught it!!! from one of those LAZY bastards I use to date! ....... freakin figures!

date a vampire

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???? is this a new cure!?

girl what have I told you about those vampire? all is well and good till you lose a quart or more of blood....

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girl what have I told you about those vampire? all is well and good till you lose a quart or more of blood....

drum roll "bah dum bump"

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I remember I had a short fling with a girl in Brazil. She was very nice. I miss her even. Kind of naive though .. as once she asked me about this "Narcolepsy" and whether it is definitely not contagious.

For which I replied, well not really ... only sexually :)

HAHA! Cataplectics do it on the floor and I'm a PWN I'll sleep with anyone! Totally contagious. Like yawning. ;)

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HAHA! Cataplectics do it on the floor and I'm a PWN I'll sleep with anyone! Totally contagious. Like yawning. ;)

you make it sound so fun - being pwn.

sleep with anyone - like yawning?

HA HA, sex that i can sleep through.

naw, man. forget it. that don't sound so fun.

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HAHA! Cataplectics do it on the floor and I'm a PWN I'll sleep with anyone! Totally contagious. Like yawning. ;)

I don't get cataplexy .. in fact I am terrified about the idea of ever developing it.

It seems - I won't.

My doctor predicted when I was 30 .. that I would go on to develop cataplexy with 80% chance of it happening in the next 5 years. I am now 38 .. and possibly nothing so far.

I say possibly nothing because I do have something that *may* be related to cataplexy.

Strong sentimental emotions (not surprises or anything startling) but things that are deep and complex may quiver my lips.

That can happen sometimes by itself when my emotional neuro system is kinda low and about to start feeling the blue - that tinge of an imminent "blues" attack (serotonin-depletio) may trigger the same peculiar quivering of lips.

Can be embarrasing if I get in the odd moment. Once I remained like that for 3 seconds with twisted lips while talking with someone.

Now I am sort of more trained, I manage to catch it in the act and reverse by tensing the lips muscles back into shape. Like reflex.

Don't know if that is cataplexy since it is not fear or fright that triggers it - but it happens as a reflection of something occurring internally - psycho-chemical reaction inside - v rarely as a reaction to some event happening on the outside.

Now back to sex ..

The only strong N reaction that may have on me - is Hallucinations.

But there has to be lots of love, trust and intimacy. Otherwise won't happen.

After all is that is done, and the partner lies back - I may drift for a couple of seconds and those precious seconds expands to near eternity.

Then I may see fantastic landspace or be presented with wonderful visions. A mini but intensive trip akin to what some ppl get when popping some exotic, powerful, short-lived whill still right-on right-there, hallucinogenic recreational pill.

For me all that is required is a nice clean person. Kind of ironic.

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I don't get cataplexy .. in fact I am terrified about the idea of ever developing it.

It seems - I won't.

My doctor predicted when I was 30 .. that I would go on to develop cataplexy with 80% chance of it happening in the next 5 years. I am now 38 .. and possibly nothing so far.

I say possibly nothing because I do have something that *may* be related to cataplexy.

Strong sentimental emotions (not surprises or anything startling) but things that are deep and complex may quiver my lips.

That can happen sometimes by itself when my emotional neuro system is kinda low and about to start feeling the blue - that tinge of an imminent "blues" attack (serotonin-depletio) may trigger the same peculiar quivering of lips.

Can be embarrasing if I get in the odd moment. Once I remained like that for 3 seconds with twisted lips while talking with someone.

Now I am sort of more trained, I manage to catch it in the act and reverse by tensing the lips muscles back into shape. Like reflex.

Don't know if that is cataplexy since it is not fear or fright that triggers it - but it happens as a reflection of something occurring internally - psycho-chemical reaction inside - v rarely as a reaction to some event happening on the outside.

Now back to sex ..

The only strong N reaction that may have on me - is Hallucinations.

But there has to be lots of love, trust and intimacy. Otherwise won't happen.

After all is that is done, and the partner lies back - I may drift for a couple of seconds and those precious seconds expands to near eternity.

Then I may see fantastic landspace or be presented with wonderful visions. A mini but intensive trip akin to what some ppl get when popping some exotic, powerful, short-lived whill still right-on right-there, hallucinogenic recreational pill.

For me all that is required is a nice clean person. Kind of ironic.

That could be the extent of your n w/ c. not everyone collapses to the floor when they are hit. some people just lost muscle tone for a few seconds. I think this is what makes c so unclear for everyone... doctors and the internet make it seem like it something that happens when you're with your friends, someone farts and you die laughing where you fall to the floor.

they need to come up with a new answer for what C is really about. we're all confused except those that have clear cut C (falling to the floor when their friend farts). It leaves so many questioning their diagnoses, and feeling weird b/c they can't be taken more seriously. if you had a clear cut episode you wouldn't be wondering. I think there is so much more to C than the textbook definitions.

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...doctors and the internet make it seem like it something that happens when you're with your friends, someone farts and you die laughing where you fall to the floor.

Um, perhaps it's not the laughter that causes one to fall to the floor; perhaps it's the ah, um...odor of the sulfuric, feculent mist that one's friend has so generously shared. You hear what I'm saying? (tapping microphone) Is this thing on? (one person claps from the back table)

No, seriously. Irishhh is right. There needs to be an actual continuum of C severity if only to allow the narcoleptic patient to realize that they are not crazy nor conjuring up psychosomatic symptoms, while certain doctors need to understand that C is not the same for every person, although some doctors are completely aware of this and validate their possibility and occurrences, while many other doctors believe that C is a black/white, all-or-nothing issue: that is, if you truly have C, you drop to a heap on the floor when it happens and that's it; otherwise it's not C.

This is simply not the case; it ranks from mild to moderate to severe. I know, b/c it happens to me. Luckily my doctor agrees with this assessment, although he didn't want to at first. After my first sleep study indicated N he asked me to describe what was happening during one of my "fainting episodes" (keep in mind that other doctors had dx'd those episodes as orthostatic intolerance a blood pressure disorder) and so I said that one time I was having a rageful fight with a narcissitic assmunch, formerly known as my other half, officially known as my ex, and that all of a sudden my body would feel as though it weighed 1000 pounds, I'd feel woozy, extremely lightheaded and then my knees would start to buckle as my vision would suddenly tunnel in and then BAM I drop like a hot potato; of course this entire description would take only seconds to occur. Which was always frustrating b/c I was usually in the midst of a very good point as to why the narcissitic assmunch, formerly known as my other half, officially known as my ex, was in fact a narcissistic assmunch.

Now, my doctor had already informed me in that visit that he suspected N from the results of my first sleep study that we went over that very day. And so in response to my description he says: "no that's not C, you wouldn't get tunnel vision."

And he seemed confused in my description and was just about to rule out C in any capacity when I said:

I said: You're sure that's not C?

He said: Yes, you don't get tunnel vision.

jenji: How do you know?

Doc: b/c I've never heard narcoleptics describe it that way before, I've only heard BAM drop to the floor, no warning. Tunnel vision is associated with fainting.

jenji: And so you believe I have narcolepsy?

Doc: Yes, I do, but without cataplexy.

jenji: But narcoleptics can drop to the floor with cataplexy?

Doc: Yes, of course.

jenji: And so, how many narcoleptic patients do you have who regularly "faint," but don't have cataplexy?

Doc: (blinking)

And so I repeated: okay, so how do you know for sure?

Doc: That's a good point.

Then he asked me a question that I found out later is a key marker of N w/C:

He said: Okay, so when you're out, when you "faint," what happens?

jenji: What do you mean what happens? After I wake up?

Doc: No, no. You drop and then what happens? How do you feel? What happens?

jenji: Well, I drop and then I can't move, but I can totally hear everything going on around me.

Doc: "Okay, that's cataplexy" and laughed a little bit at his confusion. "I'm gonna have to look into this more."

He stopped and realized I wasn't talking about fainting, as my "what happens" description was spot on for N w/C and one must keep in mind that during these first few appointments I didn't have any idea what N or C was at all; in fact, I thought his suspicion of N was wrong b/c like many, I had only seen it portrayed in films, while other physicans had dx'd me with the blood pressure disorder that caused fainting, despite the fact that I had passed the tilt-table test with flying colors and that the blood pressure pills did nothing to help my "episodes."

And so, he said he would look into this tunnel vision description and then after my second sleep study and MSLT had confirmed N, he asked me: "Now tell me more about your C attacks? Or anything odd that happens with your body throughout the day."

Now they were cataplexy attacks. It was quite amusing. My doctor is young and in fact, he's only been at this sleep clinic for about 4 years and out of school et al. for 5 and so I was so impressed that he took the initiative to look into it rather than dismiss it.

He was totally willing to expand upon the textbook definition and had in fact researched it in the interim a bit more with other sleep doctors in his clinic and found out that other N patients had described tunnel vision as well, while many others do have BAM they're out, but he realized that that wasn't the only presentation of C after all.

And so I told him about all of the oddities: from full out collapse, to drooping eyelids and face, to jerking while awake (as if jerking awake), to numb/heavy arms/legs, to slurred speech, to weakness and staggering. We have since ruled out all other possible causes for these oddities and he has come to the conclusion that I have mild-->moderate episodes of cataplexy.

For the most part, my full out collapse (maybe 10 times in the past 15 years) was the direct result of either extreme exhaustion/stress or extraordinary anger and rage. While my mild episodes were/are usually triggered by exhaustion/stress or especially excessive stimuli (this particularly intrigued him): at the market (in fact I used to have to abandon shopping and go sleep in my car and then return 20 minutes later to finish up), at concerts, in crowds (although not just any crowd, usually festival crowds where there's much to see and hear) and at the mall (usually the worst). I told him that "I do a lot of leaning," meaning that I get noodly quite a bit and will often need to lean on something asap if I can't find a place to sit down or lie down immediately. Even then I've slid down walls before.

I've had mild attacks whilst walking with friends, as well as during normal conversation and people will often see me stagger and/or my face begin to droop and contort and in fact say something to me about it b/c they're just checking to see that I'm okay (one time a friend thought I was having a stroke bc my mouth and eyes were drooping and my speech slurred), wherein I'm so very used to fighting though such episodes that I barely even take into account that anyone else may in fact see what's going on and actually see my inside manifest itself on my outside, but it's indisputable, people have noticed time and time again. I think that's why many narcoleptics can get labeled as drunk even when they haven't had a drop of alcohol.

I realized that I was exacerbating my C attacks when I was trying to fight my sleep attacks all throughout the day, while the chance for mild--->severe cataplexy would greater present itself as days and days of fighting these attacks accumulated. Once I was definitively dx'd, (sleep study 1, 2 and positive N HLA gene) my doctor told me that if at all possible to be sure to take my naps before any such sleep attacks might occur; that is before I was literally falling on my face exhausted (which I told him was pretty much my baseline at that point), and so I tried the nap schedule and since then my C attacks have been much less often and much less severe; however, if I skimp on my naps or wait too long, it'll happen in some form, while sometimes it just happens for no good reason at all. I haven't full out dropped to the floor in 5 years, however I still struggle with some sort of mild C throughout each week depending on the circumstances and my level of overall exhaustion at the time.

And so, Henry, I would say that it's entirely possible that your twisted lips incidents could be mild C attacks.

I'll tell you one thing, I no longer question my diagnosis. The positive HLA result made my rational brain see that some things cannot be disputed. It's not like I had the N gene, no other N symptoms and negative sleep studies. I had the whole sha-bang.

It's a relief to know that after 15 years I'm finally treating the right disease.

I wish everyone could have my sleepdoc/neurologist. He's the best.

Sorry to this post is so long, but I guess I just had something to add.

jenji

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