Arrowhead - Pittsfied, Massachusettsc 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
