Dx-Day

[crystalkk]

Tom,

Some of the pals talk about stacking exercises for breathing muscles, if you do a search I'm sure you will find a description of how to do them. Some claim it increased their FVC.

 

[CindyM]

I am sorry to hear you are joining the ranks of our PALS, Tom. I wish it could have been somehting different! Cindy

 

[Al]

Sorry about the crappy diagnosed Tom. Slow moving is good though. I'll be 5 years in Oct. Something to look forward to.

AL.

 

[sharonca]

Tom - I got the number of the person who will run the trial when it happens from the MDA rep - I think her name is Aimee. Anyhow - PM me and I'll send you the name and phone number to call and ask to be put in the lottery for the trial. I think it is too late for me. I was FVC 79 in March and 54 in June. Bummer. I have a bi-pap but have not used it yet.

Sharonca

 

[Al]

Better get using that Bipap little girl. It will help you feel better.

AL.

 

[tmasters]

The bright side

Not all bad Al. Now I think I have reason to talk my son into mowing the lawn for me. I heard it can be dangerous. :-D

 

[Al]

Dangerous but sometimes funny. We do need to keep our sense of humor.

AL.

 

[Just J]

Tom, I am so sorry for your Dx. I wish it could have been something different. Thankfully it is slow going. Your positive attitude and sense of humor will certainly help get through what lies ahead. God bless. ~ Judie

 

[Debbie54]

Hi

Sorry to hear about your DX Tom. I am so happy for you that it is going slow for you. My husband just found out three months ago,and he his losing his voice fast and I think he will be on a feeding tube soon. We go to the ALS clinic on the 26th. I know they are going to want to put in a feeding tube,and Matt is not going to like that at all. We all are praying for each other and I know Where to come when the time get even harder foe me and him. Prayer to you all and God Bless Us All. Debbie:|

 

[andyvaughn]

Diaphragm pacer

Hi Tom, I am sorry to hear of your diagnosis, but like the others, glad that you are progressing slowly. Oh, and Andi is the MDA contact at UCLA, a GREAT gal with lots of energy.
The diaphragm pacer study is closed to further enrollment, nationwide. UCLA never completed the IRB funding for the pacing study, I had contacted Stanford and CPMC, the closest to us in Southern California, but alas too late. I exchanged a series of emails /voice messages with Dallas, the coordinator for the study at CPMC (Northern California) she said that they are hoping to have compassionate use of the diaphragm pacer open to everyone in the next few months. I also emailed Dr. Onders, (the originator of the study) in Chicago, asking about compassionate use now...yet to receive a reply.
With any luck the pacer will get fast tracked FDA approval for compassionate use shortly, although 2 months can change everything. You can find all of the contact info on the clinical trials . gov website, email/phone etc for all of the clinical coordinators nationwide, as well as the inclusion criteria. At this point you cannot have a FVC below 50% at work up, and no lower than 45% at surgery.
Andrea - wife of Pals Jim

 

[sharonca]

Al - My grandson leaves back to Texas on Tuesday. I'll start using on Wednesday. Don't want to freak him out. Not that my dependence doesn't do that already!

Sharonca

 

[lovelily]

Hello Tom....I am so very sorry about you diagnoses. I was consumed with worrying about myself, and some other health issues, so please forgive me for not writing sooner.

Know that I have you and your family, and the rest of the members in my prayers!

Take care, Tom!
lovelily

 

[rose]

Tom, I'm sorry to learn of your diagnosis, (don't know how I missed the post!) You have a great attitude though, which counts greatly in your favor as far as progression goes. I wish it could have been something different.
take care

 

[awieleba]

Hi Tom,

I am sorry to hear also. I did read your post the other day and was not sure how to respond. I am not sure that there is anything that you can say to someone, other than you care. Sometimes it is hard to hear of one of "us" getting a diagnosed and made me nervous. It is a very selfish way to feel. I hate that about me and I am trying not to feel so sorry for myself and kids. I wish you the best and I will pray for you and your family! All one can do is live hour by hour, day by day...that is what I am working on.

peace to you and your family,

april