May god rest his soul....Prayers for him and his family....Those are powerful words to live by it is true this like many diseases can be VERY serious so enjoy every moment of life that you can....We only go around once and live life to its fullest...God Bless!!!

This is Mr. Miller's "Pity Pots" post -- from 2012:

I am fully aware that many of my comments lack the level of empathy others might feel appropriate to our circumstance. There are many good reasons for this.

I grew up with a mother who suffered from rheumatoid arthritis. I know it caused her great distress but there was no limit to her wailing and moaning about it. She got a lot of mileage from her pain, never failing to share her tale of woe with anyone and everyone. I vowed that I would NEVER behave like her if I ever came down with a severe illness. And I haven't and I did.

Over the past six years, I have suffered immeasurably. I have seen the maws of death from MG, having been in a coma from respiratory failure. I have had two major abdominal surguries and the one foot long scars to prove it. I have smashed myself up on my motorcycle. I have had two cataract surgeries.

During all these traumas, I have witnessed the behaviors of others, no worse off than myself, who, too, have MG. My first experience was with a support group near where I live. I'll never forget going to that meeting with a friend, one Saturday morning when I was at the bottom of the barrel, physically, spiritually and emotionally. That meeting was probably the most important event informing my psyche about how to manage myself with this disease.

I walked out after half an hour.

Everyone in this meeting must have studied under my mother. Between the wailing and the crying and the poor-me's, I couldn't find any comfort, just a lot of self-pity (or maybe self-loathing disguised as self-pity).

While it's not for me to judge how others behave or present themselves with this disease, I've got to say that I simply don't understand moaning and self-pity. We don't have cancer or ALS or parkinson's. We're not dying from heart disease, diabetes or stroke.

Doctors don't help the situation much, either, since they really don't know what they pretend to know about our disease. I'm still furious that I struggled for six months with six doctors before a NURSE practitioner diagnosed me. Doctors in specialties make $400,000 to $500,000 per year in this country and spend 7-1/2 minutes, on average, with each patient. This is an obscene situation and, while I'm not going down that road here, as a trained economist and healthcare finance expert, I have some very strong comments to make...but elsewhere.

The point I want to make here is that the power to heal is within each one of us. As bad off as I was at times, I never stopped believing that I would get through this. My weapon against MG was my mind. The power to heal was in my brain. I studied, studied and studied. I humored my neuro by following his direction until I learned he was "winging it." I learned that the only thing that's going to get us out of this is high doses of corticosteroids and determination, else we linger with debilitating symptoms.

When I get symptoms - rarely now - I don't moan. I stare them down and double dare them to show their ugly heads. I will use every medical technology - and have - to put down those miserable symptoms. I will live life to the fullest and not burden others with my problems. Usually, my loved ones need to drag it out of me.

I remember one online discussion I was in a few years ago where the discussion was about scooters. I told them the heck with buying a scooter..."buy a Ducati!" The comment wasn't well received but I still believe in that philosophy. Tough it out. Learn what you can. Have faith. Believe in a higher power, if you are so inclined, but, for heaven's sake, don't moan!

Cur

This is Curt, responding to a question about neck weakness to Ann Kemp. I think about it all the time: Curt, on his motorcycle, going to work with his head propped up on a makeshift brace! When I picture this I also imagine it is raining! ~joe


"This is common. While I never had weakness just in my neck, I had severe weakness in my neck for many months. I couldn't hold my head up. Because it partially collapsed my windpipe, it made breathing difficult. I could walk 50 feet without stopping. I couldn't see straight ahead and would run into stuff, including parked cars. :-)
Life was horrible, to say the least.

You need to outsmart this stinkin' disease at every corner. What I did was to fashion a brace that would hold my head up. While I wanted one of those rigid cervical collars, I couldn't get one, so I made one. I used it in my car because driving a car while staring at your lap causes accidents. On my motorcycles, I fashioned cushions on which I could rest my chin so I could see the road. Very effective! It is dangerous to operate a motor vehicle - particularly a high-powered motorcycle - if you can't see where you're going! This solution worked. "

"You need to outsmart this stinkin' disease at every corner."--I love this phrase so much. Thank you b and Joe for sharing Curt's words with us.

PS yes thanks for sharing Curts words and posts!!

While he never wailed or moaned, Curt was always here to offer support, in one form or another.
I do miss his kicks in the tookus.

Yeah , Joe, that was Curt living up to his name! He could certainly be irascible, but he cared about people as much as his ideas. Sometimes it was harder to tell than others. :-) He was often right, though tactless, and occasionally misunderstood, and those things usually got worked out over time. He was impatient and time was what he didn't have. Perhaps he knew.

from my personal remembrance:
I remember the day he asked me to be his friend. He had insulted TJ and his neurologist (in TJ's best interest, of course) and tarred the whole 12 step program and all support groups (except for ours) on the basis of his bad experience, scaring a prospective member of our group away. I told him I was biting my tongue, he was at the top of his game, and I loved him anyway . . .and although I certainly did not agree with everything he said or his need to say it, I continued to love Curt, anyway. b.

Kurt didn't like thymectomies for older men (he didn't even have a c-scan done). And he was anti-medic alert bracelet. This is from March 2011 -- his initial response, and two more detailing his anti-medic alert position. ~joe

#1 "I typed a lengthy response earlier and the site dumped that response save for the first few words, hence the truncated reply. Don't understand what happened.

Anyway, I have been in critical situations with this disease with health care professionals who knew nothing about MG. Invariably, their choices in treating me were wrong even though they were told I had MG. When I was struggling to breathe in ICU, I sat up at my bedside so I could get air into my lungs (those who have been in crisis will know what I mean). The RN's response was to send four orderlies in to my bedside with handcuffs to tie me into bed. I woke up a week later, ready to take that woman's head off for her ignorance about the disease and what I was doing. I'll never go code blue in that hospital again. :-)

I was in a crash a year ago. I told the ambulance crew about my MG and they couldn't figure out what to do about it. I told them morphine was fine but they couldn't confirm it, so I suffered...needlessly. Well, not, I should have known better than to crash my motorcycle so I deserved it.

Five years ago, at the suggestion of my neuro, I bought a bracelet for 40 bucks. It was junk. I hate all jewelry anyway but wore it until I got snagged on some frame part under my car while changing oil. I quickly took a hammer to it, threw it in the trash and never looked back.

The only people who need to know you have MG is a neurologist. Anyone else who knows won't know what to do with the information. If you are found unconscious, you will be intubated anyway. You will have something in your wallet for those who need to know. The rest of the world DOESN'T and we're fantasizing when we think these bracelets will ever help us under any circumstance...and may well serve to hurt us. It's probably more a psychological benefit than a medical benefit.

That's my take on the whole thing. Others can choose as they wish.

Just my 2 cents. ~Curt

#2 Steve -

You have caught precisely the essence of my complaint. Medical personnel DON'T know our disease and how to manage us in crisis. They treat us with indifference, if not outright hostility, when we attempt to explain what we need, particularly when we're in respiratory distress. To those who believe an ID bracelet will be of ANY benefit to the MG patient, I believe it is mere illusion. Believing is a powerful force, however, and I don't diminish its value. The placebo effect is real and results in real healing.

Given that I don't believe an ID will help us - and with experiences where the knowledge of my MG by medical personnel has harmed me - and given that I hate jewelry (well, cheap jewelry, I love Rolex watches), you won't find me wearing one anytime soon.

Anyone here ever hear the term "a little knowledge is dangerous?" That pertains to medical people and MG and is worth considering. I've been around medical people all my life - five of my first cousins are doctors, mother and aunts RNs - that I know too well the truth of this statement. ~Curt

#3 I've given a lot of very serious thought to this topic and was just discussing it with one of my buddies who was with me at bedside when I was in a coma with this disease three years ago, and the sequence of events surrounding my going into the coma. It was because of the failure of a trained RN in ICU to understand my disease and to recognize the symptoms of an MG crisis until it was too late. I went code blue. What made this failure in her assessment, or lack thereof, all the more frightening was that I was under her care for 48 hours before going into respiratory failure, giving her plenty of opportunity to study up on my screwy disease. Instead of giving me oxygen, she sent four goons in with handcuffs to tie me down in my bed. Then, all went black.

I will NEVER wear an ID bracelet or provide any information to caregivers about my MG. I believe I am better off being treated as if I were just anyone else on the street in the event of an emergency. I believe any info that tells an emergency worker anything about my MG is a dangerous distraction and can cost valuable minutes that could be used to save my life.

I think MG victims spend too much time and mental energy thinking about their uniqueness and how this drug or that can cause an exacerbation of symptoms. In the end, I think it is all hogwash and we are much safer if treated as they would treat anyone else in crisis: ie, if we have stopped breathing, intubate us, get us to the hospital and get us to a neurologist.

These comments aren't flippant and don't come from a casual observer but from someone who has been in every dark corner MG can take us.

As a result of this discussion, I have just removed all information from my wallet about my having MG and my list of drugs. I don't want to be a victim of medical incompetence ever again. This is an informed decision, not just casting fate to the wind. ~Curt

Here is Kurt on making his own Mestinon Timespans in the kitchen from 5/27/2011:

" Mestinon Timespan is a Godsend during the roughest periods of weakness. It got me through some very bad nights when MG had generalized, weakening my entire body. Essentially, all Mestinon Timespan is is 180mg of regular Mestinon mixed with parrafin wax, so I suppose it would be easy enough for someone to make up their own at home if their insurance won't pay for the trademarked item. It would be a matter of grinding up 3-60mg tablets of generic pyridostigmine in a mortar and mixing it with wax you use for canning. I would start with smaller doses of the drug first, just to see how it works out, but essentially, that's what it is.

I don't recommend others do this, but for myself, I learned I needed to be creative with my meds to get me through rough times and I would do stuff like that, just to experiment. "

One more Kurt story, and an especially vivid one, from 8/8/11 regarding a post by Beth on patient advocates. Naturally, he thought they were useless! ~Joe

" I DO understand what you are saying, Beth, but take a very different position (not surprising, huh? :-) My own mother, an RN of 50 years, became a patient advocate in later life after she could no longer run a CCU. Incidentally, she was a severe rheumatoid arthritic (no wonder I have MG).

The problem with an advocate is they can't do much advocating when one is in a coma. When we are not in a coma, we can advocate for ourselves, armed with enough information.

Three years ago, I had an emergency resection of my decending colon owing to a burst abcess (diverticulitis). While recovering, I was on IV morphine. Morphine is fine with me, for a while anyway. After about 24 hours post op, I become nauseated and then violently ill. I asked the nurse nicely to please stop the IV. I'm not sure an advocate could have said it differently. I explained that I was becoming nauseated and light-headed. At first, she just brushed me off, saying she'd check.

Hours went by and I became sicker and sicker. I asked two or three more times to stop the IV. She refused, so I turned off the IV valve and snapped the IV line with my hands. Unfortunately, I sprayed the room with blood before I could tie off the end of the tube connected to my arm. :-)

The nurse came in and started to scream at me and I told her in no uncertain terms to get the he!! out of my room and that she was off my case. She told me I couldn't stop the IV without doctor's orders. I told her she was wrong and that my action showed you could indeed stop an IV without doctor's orders. Later, the nurse's supervisor came in to apologize to me for the nurse's actions and she was disciplined.

My point here is that there is so much to despise about medical incompetence that the individual must school themselves in ALL aspects of their care, based on their knowledge of their disease. If a medical professional suggests anything contrary to your informed knowledge base, then you must consult someone or something before agreeing to any treatment. When in doubt, delay a decision until you can consult with that resource.

I will say - if it isn't obvious - that I have no problem being combative with a caregiver who I believe is either incompetent or negligent. I don't think an advocate would do a better job for me than I can do myself. I can't imagine it's different for anyone else. When in a coma, it's best to let the doctor make decisions.

The only time I really see a benefit to an advocate is at end of life. My father had a severe stroke and no brain function - "brain dead." Once we learned the result of the ECG, we "pulled the plug," as he had requested. If there had been no family, I think this would have been the perfect situation for an advocate.

Curt ""

Thank you b. xx

Thanks for reminding me about this wonderful man. He helped me so so much when I first was given this .....I want to say gift but then I realize it isn't, desease.
When I share the blunt truth with someone I think of Curt.
He really was an
mg champ. He too is a reminder ....we better be grateful for what we have.

Wow...this explains a lot as to why I've been thinking of him lately. Missing his words of wisdom. As they say, gone but not forgotten..not just a cliche, but the truth.

I'm fairly new here and have not had to privilege of knowing Curt, but from what has been shared he was a really unique and great guy. My thoughts and prayers go out to his family and friends as they deal with his passing.

Thanks for sharing the various quotes from Curt, I can see how much he will be missed and how much he meant to the group.

Joe

Thank you b. Thank you Joe. Thanks everyone.
Because of you - Curt is still very much a part of our lives!