Tuesday, February 28, 2006

Verizon Building - Albany, New York
c 2006 Curt Miller

The Daily bLog
Ah, another Tuesday. Home by 6:30 and no obligations, no meeting...just me and the warmth of my house. Comforts.

I've been fighting a cold for a couple of days now but just like with my myasthenia, I determine to stay on top with medication. Rest. Peaceful surroundings and no conflict. I must say how lucky I feel to be able to get up every morning and go to work at a job I love. Work is work, no getting around it, but between my wonderful co-workers and my friends (who include my co-workers), I can get by.

I continue to learn that life is far too short not to seek balance. Daily. Say something nice to someone and feel good. Do something positive and it comes back to you.

I've been working more or less full time since 1968, when I got my first job at Ramapo Hospital in Spring Valley schlepping hospital supplies, bedpans and corpses. Yes, and the undertakers - the generous ones anyway - would give me a buck or two to help get the body into the hearse. Not bad for 1968, considering my wage was $1.67 1/2 per hour, and minimum was $1.60. Dead people. Shootings. Knifings. LSD overdosings. New life: babies. New hope: wounds sutured, bones set. Anyway, I digress. I became accustomed to listening to bitching. The boss is an asshole, his wife is a slut; the head nurse on 4th days can't pass a catheter; "Shhhhhhhhhhhh! - Thompson, the night orderly on 3rd likes men!" Ad infinitum.

Dear reader, life is too short. Precious. Trust me. Love.

Monday, February 27, 2006

Dunkin' Donuts - Schodack, New York
c 2006 Curt Miller

The Daily bLog
I am amazed at the varability of my myasthenic symptoms. I have learned that the day after prednisone (which today was) is always worse than the day of prednisone. I did manage to walk to and from my car to work - a distance of 1/2 mile - without difficulty, but by evening my symptoms were pretty severe. My arms were weak and my voice was gone.

Tomorrow brings hope.

Sunday, February 26, 2006

Michael and Tejas - A Lifetime of Love
c 2006 Curt Miller

The Daily bLog
A spectacular day! Up at 6:30 (on a Sunday, no less). Breakfast, four coddled eggs, fish oil, vitamins and 40mg of prednisone. Lounged, read news, ads. In the darkroom by nine. First time printing in a year; too weak before. Result of darkroom session above: Michael's beloved and loyal friend of ten years, Tejas, was diagnosed with cancer in November. Michael is one of the most sensitive and talented human beings I've ever known in my life (and one of my dearest friends). We needed to immortalize treasured moments while Tejas was enjoying her last precious days with Michael. We did. I'm honored.

Made the pictures with my dad's 1959 Rolleiflex 3.5F (Planar), one of the finest tools of the craft ever made (and I learned photography when I was eleven with this camera and my "Baby Rollei," both of which I still own almost 50 years later).

Sunflower - Store at Five Corners - Williamston, Mass.
c 2006 Curt Miller

The afternoon brought a trip to a photo exhibit at Williams College Museum of Art. This wonderful little private school has one of the best permanent collections of fine art anywhere. Included among them is an original Grant Wood (of "American Gothic" fame), "Death on the Ridge Road." The photo exhibit included original work by Steve McCurry, Sally Mann, Sebastiao Salgado (one of my favorites) and Mary Ellen Mark. A small but woderful show and a great ending to a good weekend.

I'm stronger every day.

Saturday, February 25, 2006

My M6
c 2006 Curt Miller

The Daily bLog
Today was another non-prednisone day, a day when the antibodies have been dumped into my bloodstream and life - and mobility - are a little less than perfect. Thus, I decided to do what a lot of people do on Saturdays...take it easy, something that certainly doesn't come easy for me, a fact to which anyone who knows me can attest.

Over the past several weeks, I have been carefully and critically evaluating my past, present and future imaging interests and considering my capture and printing options. I've made a few important observations and am making my plans for my future work based on those observations.

First, film is far superior to digital as a capture medium, at least for those of us who can't afford $10,000 for a Leaf digital back for our Hasselblads. Comparing optimized B&W output from a large print, it appears that a 400ASA 35mm negative has about a fity percent advantage over a six megapixel digital SLR. What I mean by this is that the print quality of a 10x15 inch print from a high resolution scan of a 400ASA 35mm negative has the same image quality as an 8x12 inch print from a 6 megapixel digital camera. If I print the digital image to 10x15, it loses image quality to the extent the difference between the two capture media is noticeable.

Second, digital prints made from a 35mm negative can be extraordinary! The picture today is the 10x15 print I made from a 400ASA color negative from my Leica, manipulated in Photoshop, converted to B&W and output from my Epson 2000P printer (using black ink only). The print is nothing short of exquisite, and I will be happy to continue to print digitally from my 35mm negatives.

Finally, while I don't have a good film scanner, my pro-lab does. The print above was made from a negative scanned to a high resolution by my lab. I am unable to duplcate this quality with the scanner I do have and, I suspect, if the same negative were scanned with a drum scanner, the possibility for a knockout 20x30 print becomes a tempting proposition for me to try next. If is does work out, that means we would need a full 20 megapixels worth of digital capture to get the quality we've got laying around in lowly, low-tech film. Interestingly, that's exactly what experts were saying six or seven years ago when everyone became so enamored with digital capture and were claiming their 1.2 megapixel cameras "blew away" film.

Yea, right.

Friday, February 24, 2006

Out My Window - Albany, New York
c 2006 Curt Miller

The Daily bLog
My first really good day in a week or so, the second day after pheresis seems to be the magic day when the concentration of cholinesteraise antibodies is reduced sufficiently so that the muscles can act somewhat normally. I live for the day when this feeling is the exception rather than the rule. Well, at least it is the weekend and I shall retreat to the serenety of home and the opportunity to rest.

Thursday, February 23, 2006

Night Skiing at Bosquet - Pittsfield, Mass.
c 2006 Curt Miller

The Daily bLog
Tough day. Getting five hours sleep doesn't do it. But, what to do if that's all your body gives you? About two minutes out of bed and I knew it was going to be one of "those" days. Arms were weak and I couldn't swallow more than two teaspoonsful of my coddled eggs. I was, however, able to down a shake from Stewart's on the way into the office. Eating for a myasthenic is like surfing for a surfer: you need to learn to ride the waves...and timing is everything. For the myasthenic, this means there's a window of about thirty to forty-five minutes when swallowing is possible. This window usually appears about an hour after taking Mestinon, the myasthenic's lifesaving drug.

The rest of the day was a disaster - mouth wise - it didn't function much of the time. One lady was really rude to me on the phone, asking if I was "sleepy." I understand the frustration someone trying to talk to me must feel but I gotta say it's even worse from my side of the conversation. Friend Peter made the suggestion, upon hearing of my distress, to use JAWS on my computer. It's a reader that "speaks" what's typed into the computer. I shall investigate.

Wednesday, February 22, 2006

The Daily bLog
Today was pheresis day again for me at Albany Medical Center. I'm tired out from the session, so I'll let the pictures do most of the talking.

Nurse Jane greeting me at bedside.

The pheresis machine.

Nurse Shannon, my "embalmer du jour."

During the embalming process (the bag hanging with the yellow stuff is my old plasma; the bottles hanging is the albumen with which they replace it...12 bottles in all).

All pics c2006 Curt Miller

Dr. Taft, my hematologist, told me to come back next Friday for another round, and then again two weeks after that. Hopefully, I will then get ahead of this disease's symptoms. The mouth is the only thing that hasn't come back yet.

Tuesday, February 21, 2006

Stewart's - Nassau, New York
c 2006 Curt Miller

The Daily bLog
Some days are just regular old days, nothing special. I used to think that way but now I really appreciate something in every day. Like Stewart's. It's just a basic convenience-type store, but it's different. It's really customer-driven and the help treats you better. Prices on fresh dairy products are always lower than anywhere else, too. I appreciate all of that. They deserve my business.

My neuro called me on the way home tonight to see how things were going. Told me I was having flare-ups of the MG symptoms due to the prednisone. Called it demargination...where the nasty antibodies are rooted out of deep hiding places in the body and into the bloodstream, causing them to eat my acetylcholine thus producing muscle weakness.

Tomorrow is the pheresis. And hope.

Monday, February 20, 2006

Arrowhead - Pittsfied, Massachusetts
c 2006 Curt Miller

This is the home of Herman Melville, author of Moby Dick. It is on the side porch where he sat looking at the humps of Mount Greylock and wrote the epic story of the great white whale that the view inspired.

The Daily bLog
Today's post is different. I pasted in a correspondence between me and an English television reporter who became interested in the plight of myasthenics. I found her posting a query on the English MG support site, looking for dialogues with myasthenics. She had gotten many responses from women but few from men. This is no surprise since (young) women account for seventy percent of sufferers and older men account for the other thirty percent. I think the dialogue presented here describes the illness well.

----- Original Message -----
From: "Curt Miller”
To: "White, Natalie”
Sent: Monday, February 20, 2006 7:51 AM
Subject: Re: Male with MG

Hi Natalie -

Good to hear back from you. I'd be delighted for you to use me - or my case - in any way you'd like. I have no issues about privacy over this thing and believe the word needs to get out to a broad audience. As the leader of the largest environmental advocacy organization in New York State, I am a firm believer in advocacy, but just don't have enough of me to go around to take the lead on this disease. I'm also a realist: MG affects a very small portion of the population and is not going to get the resources that some of the more prevalent diseases will get. And that's as it should be. But, the suffering associated with this disease can be profound. It has changed my life and tempered me to be more understanding for the suffering of all people with any disease.

Contact me anytime. My contact info is at the bottom of this e-mail.

Best regards,
Curt

----- Original Message -----
From: "White, Natalie"
To: Curt Miller
Sent: Monday, February 20, 2006 5:36 AM
Subject: RE: Male with MG

Hi Curt,

Lovely to hear from you - I wasn't sure how much of a response I would get from my posting but there does seem to be a lot of interest! I've just been having a look at your website - I think it's great that you are recording your life on there and I really like your photographs too. Your viewpoint on women having children is also interesting to hear – a lot of people with MG I've spoken to are very positive about their lives and capabilities, but I think it's also important to take a step back and look at the bigger picture and the severity of each individual case.
I'm sorry to hear you were in hospital a couple of weeks ago and hope you have recovered now - I think it's amazing you are still able to work - I'm sure it must be very hard sometimes.

As I've said to other people, the programme is only at the research stage at the moment and has yet to be commissioned. I am planning on writing up the proposal over the next couple of days and hope to send it off to ITV and TLC over there by the end of the week. With our proposals, we have to put down real life case studies of people with the condition, and I was wondering if it would be OK for me to write a little bit about you. You don't have to commit to anything; I'd just like to put you down as a possible person to talk to, should the documentary go ahead. Would this be OK?

I'll certainly keep you updated with any developments and look forward to hearing from you soon.

Kind regards,
Natalie

-----Original Message-----
From: Curt Miller
Sent: 17 February 2006 17:58
To: Natalie White
Subject: Male with MG

Natalie -

I read your post on the MG message board this morning and was delighted to hear of your interest in the disease. I am a 53 year old male and was struck by the disease a year ago Wednesday at 7:35pm EST. I had never had a symptom of this - or any other disease - before.

I used to post to the MG list but was thrown off a few months ago for some of my hard line positions that Peter judged insensitive (I told a young woman to reconsider having children for a few years, until she knew she could handle both MG and children, a position I still stand by).

Anyway, my disease has progressed significantly to the point where I could hardly move two weeks ago and had to be put in the hospital for plasmapheresis (which works wonders for a few days).

I am a full-time professional level worker in a very stressful and demanding job in the US. I have no option but to work full-time and deal with the (sometimes) severely debilitating and crippling effects (no one else to pay the rent, so-to-speak). My disease has become generalized, affecting my speaking, eating and swallowing, as well as weakening my neck muscles and arms. Some days I really struggle to get out of bed and get dressed.

This morning, my Mestinon tablet lodged in my throat for 45 minutes...what a dilemma, not being able to get the one drug down that can help you swallow when it gets into the system. I've had to learn to overcome panic in such situations and do take great care. With the help and kindness of loving friends and co-workers, I am getting by.

I started chronicling my disease - and my life - on my own blog. You can view it at:
http://curt-miller.blogspot.com/

Regards,
Curt Miller

Sunday, February 19, 2006

Beaver Pond, Winter - Pittsfield, Massachusetts
c 2006 Curt Miller

The Daily bLog
I've learned that bad days follow good days. Yesterday was a good day. Today, swallowing was a problem and all meds had to be either liquid or crushed. Every so often, I get a "window" in which the Mestinon firms the muscles in my throat enough to allow liquids and small pills to pass through. Today that happened two or three times and I managed to drink some protein-rich shakes.

It takes some time and patience to adapt to a more sedentary lifestyle after being very vigorous for more than fifty years, but I've learned that it is necessary for my survival. While I will compromise my activity level to protect my health, I won't shortchange my creativity and vision. My little digicam is always strapped to my hip, ready to capture the beauty of the world around me. Today's picture is a piece of the beauty I see almost daily and have photographed in every season for many years. The light was particularly beautiful this afternoon for photography.

Another big success of the day was the production of my first truly exhibition quality black and white print from a high quality scan. I now have a workflow for producing digital prints I'm proud to hang next to my darkroom silver prints...and both will last a lifetime.

Saturday, February 18, 2006

Sliding at Bosquet - Pittsfield, Mass
c 2006 Curt Miller

The Daily bLog
Grateful for the good times. Today, for whatever inexplicable reason, was one of them. When I awoke after ten hours of sleep - a feat all too infrequently possible - I felt renewed and strong. For the first time in a couple of days, I was able to eat three coddled eggs, and continued to drink protein shakes and milkshakes for the rest of the day. And I felt fine. I even had the strength to lift and pour five gallons of kerosene...necessary to fuel emergency heaters in my house during a five hour blackout in ten degree weather.

Today, too, was a day of accomplishment. I wrote my article "Letter from the President" for the May edition of "Adirondac," read a hundred pages in a book in preparation for a seminar in leadership, continued my experiments in printing with the "Black Only" technique on my Epson printer and did the half-dozen other sundry items we all do on a Saturday.

Friday, February 17, 2006

"Ribbons of Light," Academy Park - Albany, New York
c 2006 Curt Miller

The Daily bLog
Weatherwise, today was violent. With moderate early morning temperatures and pleasant skies, we were all startled by unexpected crashes of thunder, bolts of lightning and gale winds by 11am. By late afternoon the sun had come and gone so many times I couldn't count. By day's end, snow was falling. The picture above describes the strong sunlight that pierced through the overcast for but a brief moment this morning, creating the appearance of ribbons as it lit the wet sidewalks below.

My physical wellbeing continued to deteriorate today. Weakness continued to creep into my muscles and I was unable to talk for most of the day. When I took my morning pill - Mestinon - it stuck in the back of my throat. What a perplexing situation: the very medication that helps myasthenics to swallow was unswallowable because of myasthenia itself. It was forty-five minutes before the pill finally dissolved enough to make its way to my stomach.

My ride home took me over the Dunn Memorial Bridge. With my hand stcking out the window, I made the shot below from my moving car.
Hudson River from Dunn Memorial Bridge
c 2006 Curt Miller

The old iron bridge in the background is a swing bridge built in 1868 and is still used to carry Amtrak passenger trains over the Hudson nearly 140 years later.

Thursday, February 16, 2006

New York State Education Dept. - Albany, NY
c 2006 Curt Miller

The Beauty of Life

The Daily bLog
The only things I like as much as the gorgeous buildings in Albany are the trees. All capital cities present an air of antiquity and stateliness. Albany is at the top of any list in these regards. The building in today's picture was, until the past couple of years, the longest columned building on earth, including the Parthenon. It's a pleasure to walk through it's beautiful corridors on the way to my office.

Healthwise, today was a mixed bag. Started out unable to eat breakfast - couldn't swallow. By the time I got to work, however, my mouth began to work better and I started consuming as many Boosts and shakes as I could get in me. I made and appointment for another pheresis session next Wednesday morning, hoping to stem the tide of antibody accumulation in my bloodstream, before the situation becomes as debilitating as it was two weeks ago. This afternoon, I met with Dr. Ron Stram and naturapath Alison Finger, who are guiding me in my nutritional needs during this time of advanced symptoms and attempting to help build my immune system with supplements.

This remains a rough period for me. This disease progresses unabated. I increased my dose of the immunosuppressant, CellCept from 1000mg to 1500mg today.

The driving force in my determination to whip this was watching all the folks riding their motorcycles today. I want health. Hope springs eternal.

Wednesday, February 15, 2006

Study in Shapes, "The Egg" - Albany, NY
c 2006 Curt Miller

My First Year With Myasthenia Gravis

The Daily bLog
At precisely 7:35pm, one year ago tonight, I stood up to address an audience about digital photography. My mouth felt like it was full of cotton balls on one side and I had tremendous difficulty speaking.

Thus began a year of tremendous struggle, personal pain and no small bit of accomplishment. The first two points are easy to understand, the third boggles my mind, yet, as a fighter, I guess it stands to reason that I would still pursue my goals, even when stricken by a demon.

On the downside, I underwent every type of test and scan known to man, saw all sorts of doctors and was prescribed all sorts of useless medications. Six months later, thanks to the astute observations of a physician's assistant and her ENT supervising physician, I was directed to a neurologist. That recommendation probably saved my skin. By that time, my inability to chew and swallow were so affected that I had lost 35 pounds. So many times when I did try to eat, the food would lodge in the back of my mouth, causing choking and sometimes regurgitation through my nose. Awful.

On the positive side, I pursued my lifelong dream to ride a motorcycle and took the safety training course, with lots of advice and encouragement from my dear friend Tom. In addition to the 20,000 miles I've put on my car in the past 365 days, I logged 14,500 miles on the motorcycle between commuting from May through October and travelling across eastern Canada and through New England. I also kept busy with my duties as vice president of the Adirondack Mountain Club (adk.org), becoming it's president on January 1, 2006. I love ADK, it's mission and it's people and believe I draw vital and sustaining energy from this wonderful organization.

Oh, and I've learned a lot of new stuff in my lifelong love, photography. This blog forces me to make pictures (almost) every day.

Tuesday, February 14, 2006

The Daily bLog

Today was a prednisone day. I'm getting used to the ups and downs of this disease and the medications. The steroids make me feel quite energized and ravenously hungry. I am grateful for the latter after losing 45 pounds in 10 months.

The picture today was made on a trip through Vermont sometime during the past couple of years. What drew my eye to this scene was the counterpoint between the beautiful steeple, proud and high, and the sad look of the house in the foreground where the curtains seem to form their own steeples.

Monday, February 13, 2006

"What's It" - Albany, New York
c 2006 Curt Miller

The Daily bLog
You can find creative stimuli virtually anywhere. This morning I ran into my old boss, Burt, on his way for morning coffee. During our conversation, he asked me about what I was doing with photography lately. Later in the day, another co-worker, Tim, whom I met on my morning bus ride to the office - and also an avid photographer - told me about a website that discussed "Black Only" printing with photo printers, and the tremendous quality potential the technique holds.

Little discussions and tidbits like these have the potential to stimulate creative thought and can actually provide synergy to whatever energy we are using in our artistic journeys. These two disparate events did that for me today.

Because of my disease, darkroom work has proven to be quite difficult, so what I've started doing is to take my uncut rolls of black and white negatives that I've shot with my Leicas to Wal-Mart for printing and scanning to disc. A thirty-six exposure roll costs me about ten bucks. I then have prints and scans AND negatives - the best of all worlds. I am also shooting with a digicam in B&W and using those images for prints and online viewing. You can see examples from both on my blog gallery: http://curt-gallery.blogspot.com/.

My energy level remains high. While my muscles feel a bit weaker today than they did last week, I remain positive, believing this is a sign that my prednisone is kicking in and working to put down the nasty antibodies which serve to disconnect my brain from my muscles.

Oh, the picture above is of the bark of a monstrous tree outside my building and was made with my ever-ready little Elph digicam.

Sunday, February 12, 2006

Footsteps on My Porch
c 2006 Curt Miller

The Daily bLog
The foot of snow promised by morning missed us. Boston, socked. New York, socked. Pittsfield, two inches.

Today worked out fine for me, with but one small mishap. You know those unexpected things that happen when you change something on the pc? Well, I don't know very much about network, let alone connecting my Mac to my pc. The results were interesting until I tried turning on my third computer and it wouldn't connect to the internet. Turned out to be a switch for Apache file sharing. Don't flip it.

Thirty mg of prednisone this morning and I've been eating...er, drinking like no tomorrow. Shakes, protein drinks, coddled eggs (five!).

Saturday, February 11, 2006

Uncle Sam
c 2006 Curt Miller

True Colors

The Daily bLog
I guess when times are tough, you figure out what you're made of.

I made this picture in Lake George, New York on my way home from a meeting of the executive committee of the Adirondack Mountain Club headquarters.

Friday, February 10, 2006

Pepsi Arena, Morning - Albany, New York
c 2006 Curt Miller

Fresh Starts

The Daily Blog
Sleep is not a luxury.

The doctor said I need good sleep in order to recover my strength. Said to take Benadryl at bedtime. It worked.

There are lots of tricks to managing myasthenia gravis and its profoundly debilitating symptoms. This time last week I was recovering from two days (outpatient) in a hospital bed, receiving plasmapheresis to rid my blood of untoward antibodies. So high was the concentration of these antibodies (which attack the motor neuron receptor plates causing weakness), that I couldn't walk one-hundred yards from my car to the shuttle bus that takes me to my office. This morning, I walked right on by that bus stop (see the kiosk in the picture) and the half-mile (uphill), swinging fifteen pounds of stuff from my arms. Technology works. "Gravis" sucks. Think I'll print that on a t-shirt or something.

Support stem-cell research and hug the handicapped. You never know if you may be next.

Thursday, February 9, 2006

The View From My Window - Albany, New York
c 2006 Curt Miller

Ups and Downs

The Daily bLog
Today was one of the latter.

I love those crystal clear days in midwinter when the air is still and clear. The air refines all the senses and sharpens all objects. Such a day was today.

I get greedy. I was hoping (expecting) today to be even better for me than yesterday WRT my myasthenia gravis symptoms. That wasn't in the cards. My doctor said it was just a blip, to be expected. My mouth didn't work well at all, though the rest of my body maintained strength. I persisted, and will continue to persist. I realized what an elite group I'm in when it hit home that there are only 100,000 myasthenics in the WORLD! [That's about 1 person in every 600,000.] Thank God for the other 6.2 billion who don't.

Tomorrow is opportunity.

PS - that ribbon of water in the background of today's picture is the mighty Hudson.

Wednesday, February 8, 2006

Power Station, Sheridan Avenue - Albany, New York
c 2006 Curt Miller

Picking Up Where I left Off

The Daily bLog
Savoring life.

When I woke up this morning, I knew something was different. I was 40+ hours post-plasmapheresis and didn't know what to expect at this point. I was pleasantly surprised. I was - and remained - throughout the day, totally energized and, except for some small residual problems with chewing, swallowing and speaking, I was virtually MG symptom-free. A blessing.

Adding to my feelings of elation over my new-found strength were my first-hand observation that this disease can be beat back down, though not cured, and my thorough delight in all the support the special people, co-workers and acquaintances have given me during this health crisis of many months.
Doubly blessed.

Today's picture is of a scene I've appreciated many times over the years, a couple of blocks from my office. Yes, my walking continued - even increased - from yesterday and I made this picture at lunchtime.

Tuesday, February 6, 2006

New York State Capitol - Albany, NY
c 2006 Curt Miller

Seeing Beauty

The Daily bLog
I push myself.

People are always reminding me that I'm always on the move, setting and pushing limits. I guess I never saw myself in that light. I look at some of the other people in the world who seem to accomplish so much more and think I'm quite modest in my goals and achievements by comparison. Nonetheless, whenever I see a chance to do something...anything...I feel the urgency to move, to DO.

On this, my first day post-apheresis - by virtue of renewed strength - I found the need to walk and enjoy the outdoors. It was one of those brisk sunny mid-winter days that just invigorates every molecule of one's body. So I walked. Visited my old friends in the Assembly at lunchtime and chatted about "Gravis," and about life. After work, I walked the half mile from my office to my car, the first such time in a month. Success is measured in small steps. Success brings satisfaction.

I made today's picture of the capitol building while walking in the glorious sunshine at lunchtime.

Monday, February 6, 2006

Out and About
© 2006 Curt Miller

The Third Apheresis

The Daily bLog
Friends.

I spent a couple of hours with my dear friends, Gabriella, George and daughter Diana yesterday afternoon at their beautiful home in Lenox. I've watched Diana, and brother Dan, grow over the past ten years, maturing from bright, inquisitive kids to pensive, determined and ambitious adults. Diana was sharing her adventures in urban planning/development and her aspirations for law school. I couldn't be more pleased for her. Gabriella and George are both superb physicians, anesthesia and surgery, respectively, and we chatted about Dan's success with architecture at Tulane and about my struggle with MG. Turns out Gabriella ran a clinic for myasthenics before leaving Hungary, so we had a lot to talk about. I made the self-portrait above at one of my favorite spots in Lenox on my way home from their house.

The apheresis session went well today. I was in and out in just under three hours, start to finish. There were no hemolyzed blood samples and no collapsed veins. They stuck a 12 ga. needle in my left arm to draw the blood and a 16 ga. in my right arm to pump the new admixture back in.

After leaving the hospital, I stopped at my office for an hour to take care of any important stuff. I was pleased to run into most of my co-workers, who asked me how things went. They are a wonderful and supportive bunch of people. Every one of them.

Sunday, February 5, 2006

Mount Greylock
© 2006 Curt Miller

White Whales and Apheresis

The Daily bLog
Call me Ishmael.

The picture today is a view of Mount Greylock pretty much the way Herman Melville saw it from his porch over on Holmes Road in Pittsfield. To him, the shape of the mountain conjured up the image of a great white whale. Moby Dick epitomizes the struggle between man and nature, man and life, in much the same way as Hemingway's "Old Man and the Sea" or London's "To Build a Fire." In all three, the struggle is personal. When we read the stories, we feel connected to the futility and impossibility of the situation at hand...but we can always come back to reality. Such is life with "Gravis."

On this, my second day after apheresis, I feel stronger again than yesterday. Some of the weakness lingers, some of the tingling in my hands remains, but, on the balance, I feel the harpoon has penetrated deep into the flesh of my affliction.

Saturday, February 4, 2006

Look a Miracle in the Eye
© 2006 by Curt Miller

Apheresis Works!

The Daily bLog
Look at that mug. I took this at 8:30 this morning after a 9 hour sleep. I woke up at about 3:30am and couldn't go back to sleep because I was so excited to be able to feel that strength had returned to my neck, arms and hands! What else to do but pick up the latest copy of Shutterbug and read through the latest on digital imaging.

When you go through this sort of medical thing, you are always wondering if the prescribed treatment is going to work. By the end of my second session of apheresis yesterday afternoon, I was so wiped out that I couldn't tell if I was making progress or not. I just layed in a lump all evening. But while I sat around watching a movie, I could feel life coming back into my arms and hands. Pretty soon, my neck was able to keep my head erect as I walked across the room. This morning is about the same, but look at my eyes...they are open. No more droopy eyelids! Compare this with yesterday's picture and you'll see the difference.

To clarify a bit about what this disease is and isn't:

It is a disease of the autoimmune system whereby the immune system produces an antibody that interferes with the transmission of the neurological (chemical electrical) impulse across the nerve synapse of the voluntary muscles.

It is not a disesase of the muscles, per se, as with muscular dystrophy, even though outward symptoms might sometimes appear similar. MD is a progressive and degenerative disease of the muscles themselves while myasthenia gravis is not.

It is not a disease of the nervous system as is multiple sclerosis, a disease in which the myelin sheath (the insulation on the wire) degenerates and causes a lack of transmission to the muscles. MS is irreversible, unfortunately, while MG is totally reversible with no permanent damage to either muscles or nerves.

Thank goodness for miracles.

Friday, February 3, 2006

© 2006 by Curt Miller

The Daily bLog
I'm learning to appreciate subtlety.

My second round of plasmapheresis today didn't go as smoothly as yesterday's. The apheresis unit switches the team around to different patients each day and today's nurse was Jane. A polite, shy, 30-something from the Phillipines, she went about the job of inserting the catheter in my hand for the daily blood-drawing for the pre-apheresis blood count. An hour later, she returned to tell me she needed to draw another sample because the first one coagulated before they tech could count my cells. Shit. Another hour to wait. An hour and fifteen minutes went by before she returned (with a very unhappy look on her face) to inform me that yet another sample would need to be drawn from yet another hole in my other wrist. because the second sample clotted, too.

Patience is not my virtue. After a few moments of tense negotiations, I did agree to do it one more time, with the admonition that this was it for the day. Well, they poked another hole and inserted another catheter and drew another vial of blood. Twenty minutes after settling into my third hour of waiting, Jane came in to announce that she had spoken with Dr. Dunn and, feeling sorry for me, he agreed to get the apheresis going. Well, the fun had just begun.

Jane very smoothly inserted the catheters in my arms and got me all hooked up. A couple of minutes after lift-off, though, the machine started to make a dinging noise, signalling that all was not going well. At 60ml per minute, my vein was collapsing from the suction. Switch the tubes from one arm to the other. Smooth sailing...for 60 seconds. Same result. I think we did this once more before everything started to flow smoothly. After a while, in fact, we were able to get up to 80ml per minute. All proceeded smoothly until the finish at about 1:20pm.

Exhausted.

I made the photo above on my way home at the state line lookout on Route 20. I'm standing in Massachusetts on the Taconic ridge and the Lebanon valley sprawls behind me.

Sleep.

Thursday, February 2, 2006

© 2006 by Curt Miller
This is me at 9:25 Thursday morning in the Apheresis unit at Albany Medical Center, hooked up to the apheresis machine where my plasma (and the antibodies causing my myesthenic symptoms) will be centrifuged from my blood. Thirty-five hundred CCs of albumen will replace my plasma.

The Daily bLog
Life has its way of throwing obstacles in one's path to divert us from our planned direction of travel. Today was one of those days. At 8:00 am I found myself lying on a hospital bed being readied for a complete exchange of all my blood, separation of its component parts from one another, and the admixture of fresh albumen (a fraction of human blood...and yes, it does froth up into a wonderful meringue!). The exchange rate de jur was 85 ml per minute. With a target of 8500 ml drawn from my body (yes, about 1 1/2 times what we all have), this process took about an hour and a half.

After a wonderful exchange with my hematologist, Dr. Dunn, who quickly told me I was "full of shit" when I told him I was the Henry Miller's grandson, my wonderful nurse Paula stuck me with the 16 ga needles - one in each arm - for the apheresis.

To simplify this whole affair, it's really like flushing the cooling system in your car, where you hook a garden hose into one side of the system and a drain hose to the other end. Only difference here is that the blood comes out and goes into a centrifuge and then is mixed with fresh faux plasma. The new mixture of blood cells and plasma goes into the other arm. My other hematologist yesterday, Dr. Ed Taft, told me if this process had been around 30 years ago, Aristotle Onassis would have survived his myasthenic crisis and lived a few more years so Jackie would have had to wait a bit longer. Funny.

Actually, I learned something today. Nurse Paula asked me why I waited so long to come in for treatment. I told her that I thought I was doing quite well without it and thought it was only for critically affected myesthenics. So, she looks at me and says "let's see: you can't swallow, talk or lift anything...you've lost 50 pounds in a year...hmm. That's pretty serious." "Well," says I, "I'm not a hypochodriac." "No, I guess you're NOT," retorts Paula. "Look, I've never seen anyone with MG before," I say. "Well, I see them all the time and you're in bad shape."

Live and learn.

Wednesday, February 1, 2006

The Daily bLog
New days bring renewed energy and hope. Today is one of those days when hope is just a little bit stronger.

After my first day with prednisone, I felt good. While the weakness persists, the effect of this therapy will not show for weeks. In fact, because of its action, I will be happy if my symptoms don't first deteriorate, a common and expected occurence with treating MG with prednisone.

Today turned out to be interesting. I felt so encouraged by my relative lack of symptoms yesterday that I was really taken aback when my symptoms returned with a vengeance at 8:30 this morning. When I got out of my car in Albany, I almost couldn’t walk the 100 yards to my bus, stumbling and fumbling the entire way. Same thing when I got off the bus 10 minutes later.I called my neurologist first thing when I got in to the office, concerned that this was an effect of the prednisone. He responded a little while later, indicating that my dose of prednisone – 20mg per day, every other day – was too low, and that my starting one day prior was too soon, to be the cause of the worsening. He then said he would set me up for outpatient plasmaphoresis, soon, only to find out later that the unit is booked until March!

Well, in the end, my doc got me into the plasmaphoresis unit for tomorrow morning. It will be a three session program over the next week. I got in late this afternoon for my workup exam.

I believe the downturn is only a temporary bump. There are so many traumas in my life right now, it’s probably my body’s retaliation. I guess both mind and body need to keep their sense of humor and both will come out OK.

Today's photo was made on the mall in Washington, D.C., in November 2005. The building is part of the Smithsonian complex. It was taken with a Leica M6 with 35mm Summicron Asph.