Just a request.

[walter327]

Found out that some doc's in Italy are doing a new study on Erdheim-Chester. The folks supporting it are saying we need to send all our medical records pertaining to diagnosis, treatment and progress. I'm really excited about it!!!!

[walter327]

Good experiences this week. The every other day use of testosterone gel is doing pretty well. My blood work came back normal, shin pain finally subsided and had a great date night with my better half. I get to visit the Oncologist next week.Very interesting comment on Our Stage. Seems Merle Haggard and/or some of his people like "In America" and want to talk. Sounds awfully good to be true. But, a guy can dream, can't he.And, I may have a lead as far as getting "In America" heard by the troops. Supporting them is more important than getting paid, anyway.

[walter327]

Doc said my Calcium level is oddly low. So, he suggested a supplement.Sweets has a surprise planned for my birthday. Wonder what it might be .

[walter327]

Nice surprise!! She paid for a wonderful massage for me. Ahhhhh! We, then, went out for lunch together. We've been planning some fix-ups for the home and, thus, spent some $$ at Home Depot.Then we spent a couple of hours eating some fine food at The Old Stone Inn here in Waynesville. The evening came to an end with us munching on carrot cake my sweets fixed from scratch just fer me.Great B-Day!

[walter327]

It has been a nice last few weeks. Aside from feeling a little sleepy (Fentanyl), I've been feeling much better and looking forward to getting some of the work done that we've got planned. Plus, my wife got the printer working. So, I can print that ECD brochure and get it dispersed to some new locations I've found.

[walter327]

Ooh! New one! I was doing tricep curls, part of my "Beat ECD Routine", and apparently did some damage to my scapula & tricep. Felt fine that night, hurt like %$#@* the next morning. So, I started taking 600 mg of ibuprofen every 4 hours. Didn't do much. So, I finally went to the doc. She showed me some stretches and gave me a prescrip for Flexiril. Oh, Mama!! I slept like I'd already gone to the Great Beyond, felt a difference the next a.m. and didn't need to change my 72 hr Fentanyl patch for about 94 hrs., and I could've gone longer. If that's what getting stoned is like , then I've missed out on so much in my life . Oh, what a relief just to feel a little better!!

[walter327]

Back feels much better. But, the pain has moved down into my right tricep.Everything else is going very well. Chits and I must have the same angel. That or they're related .

[walter327]

Thought I'd post this update on ECD studies. It sure has me in a sunnier disposition knowing that they're working hard on a cure.Dear ECD Global Alliance Members, We would like to announce that the ECD Global Alliance has a leadership group made up of caregivers (Carol, Charles, Jo, Kathy and Ralph). This group has regular meetings (via Skype as we are all from different parts of the world) to review possible avenues for future work and also to discuss how best to serve the members of the ECD Global Alliance. We plan to provide a report on our activities approximately quarterly via the website. Anything of special merit will be communicated to you via email in a timelier manner. I also wanted to share that recently I was fortunate enough to meet with Dr. Julien Haroche in Paris and Dr. Augusto Vaglio in Italy . Both of these clinical research physicians are currently doing studies to further the knowledge of ECD (see: http://www.erdheim-chester.org/ECDStudies.html for more information). Both men seemed passionate about the work they are doing to help ECD patients and to understand more about the disease. The mission and activities of our group were encouraged during both of these meetings. In addition, Charles, a member of our group from Australia , and I have had a conversation with a respected clinical research neurologist in the U.S. The doctor expressed his opinion that our group might be in a position to try to help the medical community get some international collaborative ECD research started. The leadership group finds this exciting news and we hope you will also. As a result of the above input and other ongoing activities, the leadership group is beginning work to formalize our group into a 501(c)3 non-profit corporation. Anyone wishing to contribute to these efforts with ideas, time or talents is invited to send an email to support@erdheim-chester.org to offer their support. As ever, we believe by joining together we can accomplish more. Thank you for your support of these activities. Peace and God’s blessings to you and your families,

[tedsingingfox]

Jun 24, 2009, 8:52pm, walter327 wrote:Ooh! New one! I was doing tricep curls, part of my "Beat ECD Routine", and apparently did some damage to my scapula & tricep. Felt fine that night, hurt like %$#@* the next morning. So, I started taking 600 mg of ibuprofen every 4 hours. Didn't do much. So, I finally went to the doc. She showed me some stretches and gave me a prescrip for Flexiril. Oh, Mama!! I slept like I'd already gone to the Great Beyond, felt a difference the next a.m. and didn't need to change my 72 hr Fentanyl patch for about 94 hrs., and I could've gone longer. If that's what getting stoned is like , then I've missed out on so much in my life . Oh, what a relief just to feel a little better!! Ha!! LOVE hearing this, Walt.Keep on bringing the good news...

[walter327]

Will do, Ted. All my blood work continues to come back in good shape, and I'll be due for another MRI toward yr.'s end.