ALS good news? Doctor urging trache?!

[BethU]

Had an interesting appointment at my pulmonologist today. He asked me if I have considered a trache, and since reading Joel's information about it, I didn't give my automatic "Hell, no!" I said, "I've thought about it, but haven't decided yet."

He said, "Well, think about it. There's some good news coming about ALS. I read it on NETMD."

I asked, "Is that available to the public?" and he said no, but he'd make a CD and send it to me. He said the article hasn't been published yet, but he got an e-mail alert.

I asked what he recommended about a trache, and he said, "We have to get access to those secretions and get more aggressive in our treatment," so I take that as an endorsement. First time I've heard a doctor sound positive about a vent.

I'm scheduled for 2-month follow ups with him instead of 3. They did an x-ray, and there's gunk in my lungs, so he's concerned.

BUT ... THE IMPORTANT THING IS ... WHAT NEWS IS COMING? Anybody have access to netmd? :?: :?: :?: :?: :?:

 

[CRF8]

Cathys pulm. Dr. was positive about a vent yesterday too. Telling us how small and portable they are now.

 

[BethU]

Interesting ! Maybe medicine is turning the corner. Maybe Joel's (and others') message is getting through!

 

[joelc]

That is very exciting news to me! I find it encouraging that there are now some doctors that are not going out of their way to talk PALS out of it.

Let's hope there is some good news coming in the near future!

A trache and vent has been so easy to have, so please don't fear it.

Thanks for sharing this information!

 

[peter57]

I have always thought/ hoped that 2010 would be the breakthrough year for MND, lets hope so.

This week in SA they are talking about Stem Cells from adult teath being developed for management/ curing of strokes , working on the nerves/ neurons etc.

It is only in its early stage yet and no mention of ALS but nerves and neurons, isnt there a common thread here, who knows, penicllin was discovered by accident.

cheers and good luck with what ever you choose to do Beth

Peter

 

[Big Mike]

Great news, Beth! I'm glad to hear you're considering the trache and vent option. It seems like more and more pALS are going that route.

As far as Netmd, I have not heard of it. I do feel there is great promise in stem cells and gene therapy in not only stopping disease progression but curing ALS and other neurodegenerative diseases as well.

 

[indigosd]

GREAT NEWS! Now we just need to make sure that we can get the supplies and care covered with Medicare-begin writing letters!