Lots of good news, to start. First, I THINK my Social Security and Medicare have been approved. I will celebrate when I get the card.
I went to the MDA/ALS clinic yesterday. I’ve lost another 8 pounds. I am eating like a pig. The doc figures it’s muscle loss. I will try to eat more, in the meantime. The good diet is getting further away as I can’t get enough calories if I’m too strict with it. Also, some new drug trials are starting soon. May or may not get involved. I need to read more about side effects etc. before I decide to take some of this stuff.
Then, the response to the ALS Walk is amazing. So far we're the top team fundraisers. This is a great organization who's sole purpose is advocating for and helping those of us with this disease. I urge everyone to take a minute, go to the ALSA website and click on 'ADVOCACY'. There you'll find ways to contact local politicians on issues regarding ALS. There are letters already addressed and waiting for your voice to be carried to your legislators. There are so many issues that hinder research and basic help that, with your input, can be moved toward resolution with these letters. Those of you in Europe check your local “Motor Neuron Disease Associations”. Advocacy isn’t as big an issue overseas because most countries look after their sick and dying with a little more compassion than here. But, that’s a whole other story.
My friend, Bruce is in town from Nashville for a few days and has been a big help. After him comes Nancy from Chi. I’m starting to need more help so it’s good to have people coming through town right now. I’m going to nap now. More later
For my family, friends, business associates and all combinations
If you meant to come to the blog for Harry Andronis, you're in the right place. If not, welcome anyway. Since the beginning of my back problems in 2007 I have received calls, e-mails and letters of support. I have been given help from around the world. I am amazingly lucky to have such caring and loving people in my life. I cannot begin to tell you how much strength and drive it has given me. While the back surgery in February 2008 worked like a charm, it turned out to be the least of my problems. Continuing weakness in my legs and hands after the surgery led to the diagnosis of ALS (Lou Gehrig's Disease) in May of this year.
Due to the progressive nature of the illness I am finding it more and more difficult, physically, to type on a keyboard or talk on the phone. Hence, this blog. I will try to update on a semi-regular basis. I do not want to discourage contact. It is just becoming harder to always respond in a timely fashion. As you might imagine, some days are better than others. I'm not sure what I want to say or talk about. At times there may be more detail than you'd like but we'll see. I hope you'll follow along, send the good vibes, have a look at the gallery and the people or things in it, maybe leave a comment and keep those calls and letters coming.
I do want to acknowledge the unwavering support from my giant core of family/friends. You know who you are. I can never thank you for all that came before and now, or tell you enough what you mean to me......... forever.
By the way, read nothing into the color of the page. I like black. One of my favorite Zappa pieces is "The Black Page". Besides, "How much more black can it be? None... none more black." - Nigel Tufnell, 1980
Onward and upward..... h
Due to the progressive nature of the illness I am finding it more and more difficult, physically, to type on a keyboard or talk on the phone. Hence, this blog. I will try to update on a semi-regular basis. I do not want to discourage contact. It is just becoming harder to always respond in a timely fashion. As you might imagine, some days are better than others. I'm not sure what I want to say or talk about. At times there may be more detail than you'd like but we'll see. I hope you'll follow along, send the good vibes, have a look at the gallery and the people or things in it, maybe leave a comment and keep those calls and letters coming.
I do want to acknowledge the unwavering support from my giant core of family/friends. You know who you are. I can never thank you for all that came before and now, or tell you enough what you mean to me......... forever.
By the way, read nothing into the color of the page. I like black. One of my favorite Zappa pieces is "The Black Page". Besides, "How much more black can it be? None... none more black." - Nigel Tufnell, 1980
Onward and upward..... h
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment