|
Audio Asylum Thread Printer Get a view of an entire thread on one page |
For Sale Ads |
71.233.237.46
Last year I was diagnosed with Type 2 Diabetes and was pretty down in the dumps. As many of you know, I have a form of adult-onset muscular dystrophy called Miyoshi Myopathy, caused by a deficiency of the protein dysferlin. It's a non-lethal form of MD in that it appears not to result in cardiomyopathy like Duschenne dystrophy, but it does result in being confined to a wheelchair, which of course limits options for exercise, and one must balance the risk of accelerated atrophy from overuse of the muscles with accelerated atrophy from insufficient use.
The diabetes diagnosis was a wake up call for me to get my sh!t together, which ultimately included leaving my law firm and working on a more limited part-time basis for a foundation that funds research into finding a treatment for my particular designer-disease.
Well, in less than a year, my Hemoglobin A1C level has gone from 7.5 last June, to 6.6 last September and now down to 6.0 just the other day. For reference. 6.5 to 7.0 is considered pre-diabetes and 7.0 and above is considered diabetes. So, with better diet, less booze, more rest, less stress, a small amount of the drug Metformin, and a very focused exercise plan, I am no longer even in the diabetic range. And all that while living in a wheelchair.
It's a happy day and I just wanted to share some good news. I consciously decided not to post about my diagnosis a year ago and instead focus on making it go away. (Well, I'm still technically diabetic for life because it would come back if I regress to old habits, but so long as I keep up my regime I might not ever have any of the symptoms.)
(Also, and completely unrelated but really cool, there are now three therapeutic candidates that could help me with maintaining muscle strength, and maybe even increasing muscle strength, that are in clinical trials, with one already approved in the EU, so that's another exciting thing in my life these days.)
Sorry if I'm "Facebooking" here. I'm not on Facebook, so maybe I am a bit!
But one constructive lesson for all of you is to get tested for diabetes if you haven't been already, especially if you are nearing or older than 45 and at all overweight or inactive. Some shocking percentage of people don't know they have diabetes at all until they have physical symptoms that are irreversible, and by then the risk of blindness and amputations is pretty high. If caught early like mine, however, you can literally reverse the glucose level and prevent the risk of symptoms with life style changes (and perhaps a little Metformin).
Yup, you certainly can if I could from a wheelchair. My methods are limited, but have included swimming PT, arm cycles, stationary foot pedals, small weights and stretching. Most people can easily do the equivalent of that and more with little effort. So, get tested and get off yer arses! ;-)
___
"If you are the owner of a new stereophonic system, this record will play with even more brilliant true-to-life fidelity. In short, you can purchase this record with no fear of its becoming obsolete in the future."
Follow Ups:
... To be blunt, diabetes is about the last thing you need. You are to be congratulated for being proactive and getting on top of it early. I'm sure it has been a tad tougher than you reveal.
The best thing is you have it under control and I feel sure you will continue to do so.
Keep up the swimming and anything in the water. It keeps me ticking along which does surprise a few folks!
Good news indeed Josh. Pass on my regards to your Mrs and the menagerie.
Cheers.
Smile
Sox
life deals you a bad hand. I'm embarrassed to admit that I'm still trying to redefine myself after my vision loss 3 years ago... but I am still trying.
We've never met, but I sincerely hope to do so one day. You've inspired me more than once with your posts here.
I'm thrilled to learn that there are a few new drugs in the pipeline to potentially mitigate the effects of Miyoshi myopathy. Hopefully, something will be available to you in the very near future.
Warmest regards,
Greg
Hey Greg,
Thanks for the kind words, and I too would like to meet you some day. As I recall, you were living on the Cape and are now up in VT?
Transitioning is hard. I was just extremely fortunate in that the new job for the foundation literally fell in my lap as I was withdrawing from my firm and considering full time disability. I'm sure you'll find something too, but don't sweat it in the meantime.
Josh
___
"If you are the owner of a new stereophonic system, this record will play with even more brilliant true-to-life fidelity. In short, you can purchase this record with no fear of its becoming obsolete in the future."
.
----------------------
"E Burres Stigano?"
Dudes like you always have some happy news coming their way, even if its attached to less than thrilling circumstances You're a happy magnet. Not bad for a lawyer. Glad to hear this and glad for you.
When people get down or are brought down, the tendency is to get even lower. Some don't, either by disposition or deliberate mind training.
Keep the sunny up Josh, and keep finding good things to post. The rest of us can use it.
Congratulations!
Congratulations. You deserve a big "ATTA BOY!"
Neil
:-)
Warmest
Tim Bailey
Skeptical Measurer & Audio Scrounger
I appreciated the well wishes and sound advice, and enjoyed reading the anecdotes as well!
I'll keep on my regime!
___
"If you are the owner of a new stereophonic system, this record will play with even more brilliant true-to-life fidelity. In short, you can purchase this record with no fear of its becoming obsolete in the future."
....and I hope things continue to improve for you.
Best regards,
Dean.
reelsmith's axiom: Its going to be used equipment when I sell it, so it may as well be used equipment when I buy it.
good for you! Had a friend that was diabetic and treated it via exercise, diet and stress reduction.
He lost weight and took care of himself and lived to be 86.
He approached it with the same verve, determination and intelligence you have.
Then again I know others that have it and have other friends that have it and (too) many of them are lazy
and in their approach to dealing with it. Overweight, no exercise, careless with diet. The
affect it has on their physical well being is tough to see, but the affect it has on their mental well
being is HORRIBLE to see.
A nasty disease that unfortunately we will see much more of (and at younger ages)
in our population, mostly due to poor diet and poor choices.
Anyway, GOOD on YA! You set a great example for those that "can't".
"Once this was all Black Plasma and Imagination" -Michael McClure
Congratulation on taking the information and turning your health around!
not many do that - it is an accomplishment worth Celebrating - and I heartily support your achievement!
A few years ago I worked for a diagnostic company that was trying to sell a product that could quantify the risk of a person developing type II diabetes over the next five years - unfortunately the CMI am now working for a more successful company that developed a diagnostic around RA - another debilitating disease-
Keep the faith and, again, Congratulations!
Happy Listening
Dude! You da mon, mon.Here's a little story...
Back in college, I shared an apartment with a guy who had MS. It was sort of early stage, so he could function pretty well, but would lose his balance and fall into something now and then. And, he was a pot-smoking hippie, while I was a wet-behind-the-ears conservative guy. Yet, we got along great. I can still see him, dancing to Otis Redding's "Can't Turn You Loose", and falling against the wall. We both had a good laugh.
You take good care of yourself, and thanks for sharing a piece of your life here.
:)
Edits: 04/24/15
...nice to hear.
are always a joy to read, especially this one. Good for you, the struggle must have taken alot of determination and effort. Hemoglobin A1C is , for me, a struggle to keep in the 6.0+ range and I too use Metformin. Lucky for me that just doing the chores around here provide pretty much the exercise to keep that number at the same level.
When my neck was cracked in a car accident (I was rear ended) and 2 discs in my neck were shattered they put me on Prednisone which is a steroid. My vision became blurry within a couple of days after I started the ramp up of the dosage. A friend who is a PhD pharmacist told me that the drug causes a spike in blood sugar. Sure enough my blood sugar level went to 310. My Stanford doc told me to lose 30 pounds....I quit potatoes....a month later I had lost 30 pounds. Nowadays my blood sugar is hovering around 110...
But I digress, keep up your exercises and you will be just fine....
Thanks Larry, and sorry to hear about your experience with Prednisone. It is really nasty stuff - should be avoided for all but a few indications.For some reason that is not entirely understood, both my form of MD and the lethal Duchenne version show high levels of inflammation in the muscle cell. Apparently, the immune system is reacting to the cell death in a way that only heightens the damage through an inflammatory response.
Also for some reason that is not understood at all, Prednisone helps reduce the inflammation and extend ambulation and life span in children with Duchenne, but actually worsens Miyoshi Myopathy. I tried it about 22 years ago, and it was NASTY. Fortunately, I got off of it fast and had no permanent damage (from the prednisone, that is).
Sadly, many neurologists see the inflammation in muscle biopsies and assume that a patient with Miyoshi Myopathy has Polymyocitis or some other primary autoimmune disorder instead, which can be effectively treated with Prednisone, so they prescribe it to these poor patients in increasing doses as it kicks the crap out them. Thankfully, that is very rare these days now there there is more awareness of various forms of MD and definitive mutational diagnoses for the different kinds. Also, I was extremely lucky never to have been misdiagnosed because I was quickly referred to one of the few specialists in the world who knew what it was back in the late 1980s and guessed correctly even back then that it was caused by a missing protein and was not a primary autoimmune disorder.
___
"If you are the owner of a new stereophonic system, this record will play with even more brilliant true-to-life fidelity. In short, you can purchase this record with no fear of its becoming obsolete in the future."
Edits: 04/24/15
Most doctors will say to eliminate alcohol. After teaching nutrition a few years I have to agree. Congrats on going down to 6.0 as often people can be as high as 10-12 or more before diagnosis. Keep it going!
And this is Central, you can always post what's going on, we always want to know. I look at us as a tight knit little community here.
E
T
And my best wishes for the future!
Post a Followup:
FAQ |
Post a Message! |
Forgot Password? |
|
||||||||||||||
|
This post is made possible by the generous support of people like you and our sponsors: