Sunday, September 30, 2007

as his crippled dad, i appreciate a teacher who responds to email. amy abandoned me early in the year when i offered to pay for advanced optional volitional materials for the whole class, hoping to forfend him getting a bad attitude about school, given that he is so advanced.

csy 1756 2113

Saturday, September 29, 2007

Hey there BH,
> What is going on over there? I am so fricken bummed out. I feel like you
> are slipping away and it makes me sad. Are you able to read email and
> respond? You seem like some kind of hero or something. I mean, you have
> kept a personality about it all straight through to the last entry. Your
> reflections are powerful. These late comers to your blog should just shut
> the fuck up and let you be BH. But you offer them no less courtesy than the
> folks who have been reading your blog for a few years. Well, I am just
> bummed knowing you are not feeling so hot but on the other hand, the vent
> action doesn't sound like a show stopper. So, what happens next. What
> happens when you pass away. What happens to the blog. What happens to your
> legion of friends on the internet? Its almost like when Forest Gump quits
> running. Everyone just stands around and looks at one another.
> So, it is my hope that there is a way to keep your legacy going when you are
> gone. Not out of pity, but out of respect for who you are. Dignity is a
> word that coes to mind.
> I am sure you don't remember me but I was the tickneen guy. I was the just
> another day for an addict dude. You actually responded to some of my
> emails. I thought that was cool.
> So, I don't know what to say except thanks for sharing your story with the
> thousands of people. I would love to see you glorified in the news media
> and have tons of cash sent to your wife and kids so they can continue their
> business. But, for some reason, that feels like exploitation.
> If you have any regrets what are they? If you have any advice for us fucks
> who still have our health? Whatever you have to say, let it be heard.
> I hardly know you, but in a way, you are my best friend.

csy 1950 2148

Friday, September 28, 2007

pls use hot wet towel to clean dried saliva off of left neck and claviccal collar bone,

no csy.

Thursday, September 27, 2007

hello brainhell,

my name is Avi Kremer, I am 32 yo, currently live in Boston. My cousin referred me to your blog - fascinating!

I was diagnosed with ALS in october 2004 (my anniversary is coming) while I was a grad student. since then I have been trying to raise awareness and funding for ALS research. my latest initiative is called Dollar4Life ( ). As you can see on the website, Dollar4Life is an attempt to break beyond the ALS community and get to a million people who never heard of the disease, educate them about it and get them involved (even if by donating $1). We spread the word through viral emails, blogs etc. I hope it will work.

if you like the idea, perhaps I can add your photo and bio to the portrait gallery? let me know if you are interested.


csy 1716 1912

Wednesday, September 26, 2007

monday, due to pointless though stressful visits to 'experts,' the cs started at 1320, ending around 2000. but milder due, i think, to tapering off the nasal steroids 9 days ago, and the doctrine that suctioning causes suctioning. tuesday at home all day, no cs at all.

Tuesday, September 25, 2007


Monday, September 24, 2007

thanks. i appreciate the prayers. i know they're helping.

On 9/20/07, bob <[[[]]]]> wrote:
> I understand your request and will not send you anything you do not
> ask for. We will hope the best for you and will pray for you and
> your family.
> Mark
> On Sep 20, 2007, at 11:46 AM Sep 20, 2007, brain hell wrote:
> > call me brainy. i have no religion and don't want yours.
> >
> > On 9/19/07, bob <[[[]]]]> wrote:
> >> If you feel comfortable enough you can send me your name so we can at
> >> least address you by other than "Brainhell." We are meeting tomorrow
> >> so I am sending the prayer request in advance of our meeting. We
> >> meet every [[]]day at 6 A.M.
> >>
> >> Mark
> >> On Sep 19, 2007, at 10:35 AM Sep 19, 2007, brain hell wrote:
> >>
> >>> not offended. thank you.
> >>>
> >>> On 9/18/07, bob <[[[]]]]> wrote:
> >>>> A friend of my mine came down with Bell's Palsy which he is
> >>>> recovering from and after a search for the term "drool bucket" to
> >>>> send him a little lightening Monty Python humor and I happened on
> >>>> your Blog page. It took me so completely by surprise that I had to
> >>>> read your account of your struggle. I will not post anything on
> >>>> this
> >>>> unless there is something you would like me to add. I am not a
> >>>> doctor or any kind of medical professional so I wasn't familar with
> >>>> ALS other than I knew of Lou Gehrigs disease. I was drawn into
> >>>> your
> >>>> story as I read and was unable to pull away until I read quite a
> >>>> bit.
> >>>>
> >>>> I have been in a Christian bible study and leadership group in
> >>>> [[[]]] called [[[]]] for the past 14 months and would like your
> >>>> permission for this group of 12 men to pray for you and your
> >>>> wife and
> >>>> family. I had just finished a book's section on understanding how
> >>>> miracles can happen in this present day and it seemed like there
> >>>> might be some reason I found your site that I don't understand at
> >>>> present.
> >>>>
> >>>> I am 49 with two children 13 and 10 and several of the men in my
> >>>> group are your age with children the same age so your story
> >>>> resonated
> >>>> with me. Many of the men in our group have faced illness and
> >>>> deaths
> >>>> of friends and family so I have shared their pain first hand.
> >>>>
> >>>> I was moved to tears by your story from reading this at work and I
> >>>> had to follow up with this note tonight.
> >>>>
> >>>> My prayer is for God's love and spirit to be with you in these very
> >>>> difficult times. Please let me know if you in any way are offended
> >>>> or unhappy with this response.
> >>>>
> >>>> Yours,
> >>>>
> >>>> bob
> >>>>
> >>>
> >>>
> >>> --
> >>>
> >>>
> >>>
> >>>
> >>>
> >>
> >>
> >
> >
> > --
> >
> >
> >
> >
> >


Sunday, September 23, 2007

yesterday during the movie, at 630 pm, the cough urge grew strong, so i went chin down over a towel. it was a drool fest but no suctioning.

in 8th grade 'tony' drew for me caricatures of holmes and watson that his brother had developed. i scorned his version and drew my own, more cartoonish. the teacher noticed mine and praised my creativity. i lapped up the praise and never mentioned the concept source. the teacher even had a silkscreen made of it. 'tony,' who became a professional artist, never mentioned it either. this is my apology. i'm sorry, 'tony.'

Saturday, September 22, 2007

was suctioned only once yesterday, at 712 pm. maybe the key is an afternoon movie.

25 years ago she wrote a poem

he goes down on me
he goes in on me
but he doesn't really
touch me

she did not like it when a guy in class said the poem was about a condom.

Friday, September 21, 2007

yesterday the saliva storm waited until precisely 730 pm, when my wife arrived home with two tired kids. the night helper having warned of being late. they needed her, but rarely obeyed. for 90 minutes, she dealt with my constant need for suction. she did well. i thank her.

Howdy, BH. This is brad here, regina's husband. regina has been keeping me abreast of some of your postings, and when she said you were worried about the the possibility of a ventilator, I told her I would be glad to share our experiences of the last year. regina also tells me that you've been living with a feeding tube. I have found the vent experience to be analogous: you dread it and fear the unknown, but once you're used to it, it's not such a big deal and you realize the the folks who said better to do it sooner were right. If your current pulmonary problems are due to constantly aspirating oral secretions into your lungs, you will be amazed at how the non-fenestrated trache tube puts a stop to that problem. regina was constantly coughing and choking on mucous, up to the point a year ago that she developed severe pneumonia, landed in the hospital barely able to breathe, and assented to being intubated. The throat tube was very uncomfortable, and our pulmonologist advised us that regina would be much more comfortable with a tracheostomy. We took her advice, and it wasn't long before regina had regained all her pre-pneumonia functioning, with the exception of no more choking on mucous. It can't drain down past the trache cuff. Of course, we have to suction her mouth periodically, but we were doing that before, but less effectively. regina was able to ween from the ventilator in the hospital, which was a little tough due to the compromised functioning of her lungs. That is why it might be advisable to look into making this step before you get a serious lung infection. regina had been sleeping on a Bi-pap machine, before. The situation after we got out of the hospital was similar: She was able to function breathing normally off the vent during the day (while seated in her chair) but we used the vent at night or when lying down to rest. The vent is a very positive and sophisticated device, and inflates her lungs to preset volumes and rates, while responding to her natural breathing rythyms and rates. It didn't take long to get the hang of operating it, our medical goods supplier is very good at providing training and keeping us stocked with supplies. We were able to get our caregiver trained, and she is a country girl with no special medical skills or education, just willing to learn. Our goal when leaving the hospital was simply to get regina back home. I think we were all surprised to learn that she could resume her usual routines, continue her artwork, enjoy the critters and the yard, travel a bit and visit friends, all with the support of the vent. Vent care is fairly simple, there is tubing, filters etc. to change periodically. regina requires periodic suctioning of the lungs through the trach by way of a 'Ballard' device, easy to learn. The supplier checks all our stuff monthly and replaces doubtful equipment. Our care for regina is also not that much different from before. The vent allows her to get reasonable rest, and moving her around in the bed is just a little more involved due to the vent tubing, but really not difficult. One thing that has changed is that I do not leave regina alone on the vent without a baby monitor so she can signal me if there is a problem. I don't think she should be left while on the vent because her airway is occupied by the tubing, and if the vent should fail (very unlikely, hasn't happened yet) i don't think she could get adequate breathes through the tubing. The vent's portable, (sometimes mounted on the chair back, or in the car) we have backup equipment, the batteries (and generator) have enabled us to make it through extended (several days) power failures. Our supplier told us of one patient, who is otherwise healthy despite his pulmonary failure, who puts on his backpack vent every day, grabs his 12 hour battery pack, and heads off to work operating heavy equipment. Other stories include a local kid who headed into town in his chair, had forgotten to fully charge his vent battery, and had to bag himself all the way home (good thing he remembered to bring the bag!) It is kind of amazing the things you can learn when needed. All of us who are involved in regina's care are proud of what we've been able to accomplish to allow her to live the quality of life we would all want if we were in your situation. The thing is, if you are going to be on a vent, the technology is so advanced now that living at home is not only possible, but quality of life alone makes that choice obvious, never mind the greatly reduced cost compared to an advanced care facility. What is needed is a group of dedicated caregivers who support each other while they support you. We are fortunate to have that, but it takes work to make it work. The sacrifices are worth it. Feel free to ask more specifics, or have your folks contact me at ...

Thursday, September 20, 2007

the belt over my thighs fights against my spasms which cause me to slide out. around my waist does not help.

csy 1629 2000

Wednesday, September 19, 2007

i will say whether to recycl -- r-- or ssave --s -- each mail u show me

csy 1729 - 2005

Tuesday, September 18, 2007

she loves me. she does not cope well with stress. having the duty of deciding on my behalf in a potential emergency, and maybe dealing with me at home on a vent, stresses her. a lot. she doesn't want me to die, but she can't accept the burden, so she and her allies suggest that i should die. hence her opposition to me coming home if i am on a vent.

csy 1800 - 2100



Monday, September 17, 2007

i sent an IM to my boss, saying that he lead our team the way dick winters lead E company, 506 PIR. he said it was too high praise. but he lead by example, and would do anything he asked of us, while still recognizing our strengths and assigning work accordingly.

csy 1749 - 2105

Sunday, September 16, 2007

what does 'ussumbeh' mean in fijian/

csy 1830 - 2200

Saturday, September 15, 2007

i will soon be unable to use my right hand. there is great danger there because i use it to position the chair for breathing during choking fits, to signal for suctioning, and aid the suctioner by getting my mouth open with a chair tilt. i urgently need help.

csy 1830 - 2000

Friday, September 14, 2007

am so feeble i can't ring the swing bell. i need a desk bell where i just press a button.

csy 1930 - 2100

Thursday, September 13, 2007

to last night's sub 'tape' spells 'ape,' ' small' spells 'slam,' and 'chin' spells 'chair.' explaining anything to her was agony for us both.
when i shake my head it means 'no.' let her sleep.

if mishandled in the bed, i am very vulnerable, and i chose to spend the night in the wc.

so mean, i know.

csy 1749 - 2000.

Wednesday, September 12, 2007

on march 14, your group responded to a 911 call at our house. i was unable to breathe. after a time, one of our crew did a jaw trust on me, and i got air. after having accepted that i would die, this air was very welcome. i tried to signal the young man by making an 'uh huh' noise with each exhale. he saved my life. i don't know his name. maybe this procedure is routine for you, as is saving lives. but i hope you will convey my thanks to the man.



csy 1735 - 2000

Tuesday, September 11, 2007

was suctioned only twice yesterday, after 8 p.m. i think it was because no shower, no poop, no steroids.

Monday, September 10, 2007

the he-coughs-becauuse-he's-tired-and-should-nap hypothosis is compelling until one asks 'why does it subside around sunset, when he is even more tired/'

csy 1600 1922

Sunday, September 09, 2007

09/18/2002 11:07:33 AM

csy 1722 2057

Saturday, September 08, 2007

i have bad dandruff. i may be losing control of my rectum.

csy 1715 - 2015.

Friday, September 07, 2007


i like to hear you read. you enjoy it and you are good at it.



csy 1639 - 2006

Thursday, September 06, 2007

playing basketball with friends 10 years ago, i would drive to the baseline, leap in the air, and with my extended left hand, whip the ball toward the basket. it often went in. now, my left hand doesn't move, and my right is so weak it took me 25 minutes to type this.

csy 1615 - 2025.

Wednesday, September 05, 2007

09/10/2002 11:28:12 AM

csy 1530 - 2010

Tuesday, September 04, 2007

the family meeting decided that my stubborn, mean attitude is a big problem. i should stop insisting that if a vent becomes needed, that i come home to live. my wife says a nursing home would be needed.

and i am mean. e.g. i asked my BIL to 'please give others a chance to talk,' but later told him 'you know jack.' because childless, he was lecturing about children.

i told the woman misreading my word 'it's hard when u misread,' and put the font size at 72. later i said 'u stll misread despite this huge font.'

i am stubborn and mean, QED.

csy 1805 - 1945.

Monday, September 03, 2007

the lie seemed to work...

i can barely communicate. i have already seen my wife and your boss misunderstand me about you. so ignore what you may have heard so far. this is it for real ... you were rght and i apologize. i want to change how i treat people. thank you.


csy 1747 - 2000.

Sunday, September 02, 2007

i want the word page turned a certain way when i am in bed, so i can reach the word 'suction.' last night's helper had seen and heard my wife 'get it' at bedtime. when i woke for suctioning in the deep dark, i tried several times to turn it right, but she kept undoing it. then i tried using my words. this one had thought in the day that 'caught' spells 'cough t' when i tried to explain how she made my tongue bleed. by the time she threw her arms up to punch the air, the flashlight beam was trembling with rage as she yelled at me for intentionally being mean. when i asked for the sheet because i was cold, more yelling. i asked her to go get my wife, but she refused. when i asked for a blanket, more yelling. she said that she is not coming back sunday night because i am so mean, which she said is 'why people quit on you.' then she spoke on the phone to a 'fucking nigger' who puts his 'dick in bitches.' maybe she was already mad at him, and i got in the way.

by morning she said she'd be back tonight. if she comes, i plan to apologize to her, to lie and appease so i may live.

cs yesterday 1100 - 1930.

Saturday, September 01, 2007

coughing and suctioning from 5 pm to 8 pm last night.

cs 1700 - 2000.
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