Just a request.

[charlie 2]

Hope everything turns out ok. If there's problems, just remember we're all here to help ya out. My prayers and thoughts and with you.

[walter32799]

I'm back!!!

[mojobone]

Hi, Walt!

[michael11]

Hi Walt, I've been wondering how you are?

Michael.

[walter32799]

Good to be back! Long road.
First, I got a nasty virus from facebook. Shut my computer down for about two months. Finally, a new hard drive fixed the problem. Not cheap!
Then, once I got back on line, all my old passwords and usernames on Taxi wouldn't let me in. So, per the advice of a wise friend, I opened up a G-mail acct. and re-registered. Here I am. I'm walter32799, now. But, at least I'm back.
With the Help of my Pastors' wife, we're finishing up a video about ECD, treatment, caregiver stresses and concerns and a song written and performed by moi, "Best of All". That clip will be imbedded on the erdheim-chester.org site hopefully by the end of May if not before.
My Oncologist said that, unless I become symptomatic, there's no need for bi-annual mri's. That saves a buck or two.
Saw my Opthalmologist today. He was very pleased and said I exceeded all his expectations, considering the mess he was confronted with on my first visits. I have either continued to improve or have stabilized. My vision is 20/25!
There is a young lady who underwent a surgery to remove a growth in her head, like mine. They then put her on massive doses of prednisone for growths in her orbits, which did nothing for her sight. The growths suffocated her optic nerves and she is blind. But, they also put her on a 6-7 month round of Cladribine and Interferon and the growths on her brain, heart and right (I think) arm broke up and disappeared.
I sent the info to my doc, and we shall see.
Oh! The insurance co. decided a med, bupropion or generic wellbutrin, was too expensive for my formulary. So, my Family Physician had to negotiate w/ them to okay a new twice a day med. Catch-They must be taken 8 hr.'s apart, and I can't take one in the evening as it can cause insomnia. Well, after about 2-3 days following the directions, I began waking up betw. 3 and 4 AM and not being able to go back to sleep. After about a wk of this, and being exhausted, I took matters into my own hands and cut back to one tab in the AM only. First night, I slept straight through, except for the dog needing to perform his nightly grass watering routine. I've been sleeping staight through ever since, and tend to be much easier to get along with.
Insurance companies! Profit before health, I reckon!!
Obviously, lots is happening. God's been VERY good to me, and I've probably forgobtten something. There's always tomorrow .

[coachdebra]

FYI -
When my Ins co did that with my migraine meds, they were going to charge me $250 for 9 pills! I want to Costco and got the generic 9 pills for $16....

That was one headache I am glad I could avoid ...

[walter32799]

And health care reform is Socialism. I think it interferes w/ the CEO's making millions off of our illness, and as soon as we get sick enough to cut into that profit, they cut us loose.

[walter32799]

I forgot about this good news:
" I wanted to share with you some of the hopeful things that are happening within the organization.
In the past couple weeks we have been contacted by three different research teams interested
in beginning new research studies on ECD.
One team represents a group of doctors we have been talking with for some time about getting
an ECD research project started. Last week we saw definite movement toward that goal.
The other two teams have contacted the ECD Global Alliance, unsolicited, to ask if our organization
would be willing to collaborate on a possible ECD study. Of course the answer was a resounding,
“Yes.” It might be that collaborations will be formed between two or more of these teams to
form fewer, yet stronger, studies. All of the proposals being considered are geared toward
learning more about ECD as opposed to clinical trial type studies.
We also hosted an ECD Global Alliance Medical Review Board this week.
It was very uplifting to listen to these ECD knowledgeable doctors talk about their work and
ideas related to ECD research. This group of doctors is certainly interested in learning more
about ECD so as to have the most effective and rational treatments available.
As all this is happening we are also making preparations to communicate out to the world that
we are prepared to award an ECD research grant of our own.
None of us can predict where all of this discussion will lead. Any studies that come to fruition
will take time, and it is impossible to know how many studies might be needed before meaningful
advances in the understanding of ECD can be achieved and translated into better treatments.
However, the fact is that researchers are interested in learning more about ECD, and since there
is now an accessible patient population available in the form of our organization, more possibilities
exist. This is all very promising and shows that “Together we can make a difference.”
Thank you for being part of the organization. Because of you all this is possible."

[Pinkstar]

sending you health and love!

[allends]

I'm so glad you have good news to share, Walter! It is difficult for most people to fully understand what you are going through, and it is a blessing to walk with you on your journey.

All The Best,
Allen