My 3rd clinic visit update

[brendapals]

Hello friends,

I went to IU for my 3rd ALS clinic visit this past Tues, 2/17/09. Here is my brief update:

My FVC is 77% and my NIF is 88%, my reflexes are still brisk, my strength in arms, hands, feet, legs are all still strong. My weight is stable, my speech is awful, we talked about the advantages of a peg tube in the future, we also talked about the cephtriaxone study that my neuro will have available in the spring.

I couldn't find if I had put this on here already, so I apologize if it's a repeat.

No talk about a trach yet, but I do notice episodes of shortness of breath after minimal exertion. My disability should start in Aug 09 if I don't mess up and work too many hrs. The pt advocate put me on the walk committee so I'm going to my first meeting for that this coming Tues.

Today my 18 yr old son, as well as a friend that I talk to about every 2 weeks, both commented that my speech was better! that's always a good thing,

I know my speech is not better, maybe I'm just taking my time more now. I may still have ALS, but it sure doesn't have me!
Never give up,
Never let up,
Never lose faith,
brenda

 

[rose]

That is good news that your breathing is not all that bad! I was really wondering after the unusual testing method used by your local pulmo's office. Glad to hear it isn't affecting your arms or legs yet either. .... maybe your speech is better? or not.

 

[BethU]

Sounds like a great report. Strong and sassy ... just the way we like you.

You may be learning to manage your disarthria better ... slowing and separating syllables, etc. Or maybe your son and friend are getting better at understanding you. Or maybe your speech IS actually improving! I rule nothing out with ALS .... someday, there is going to be a PALS who goes into remission, and then they will figure out the answer.

If they haven't done so already.

 

[ktmj]

Great brenda - I'm counting on you to have that 30-yr warranty! A good 'ol Southern gal to prove them wrong!:-D

 

[psiep]

Have you begun the cephtrixone trial yet? I'd like some information on how its working for you?

 

[lydia]

Hi Brenda, I have wondered how you are doing.

Lydia