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Aug 10, 2005

First I have to say that today in NYC it is a wonderful day. I hope the same is for my other family....

Dad had his first clinic visit today. Although very long it was great. He felt really great speaking to the different specialists and working with each and everyone one of them. Each of them had advice for different things and all made dad laugh...

At the end when the doctor came in and did his stuff he told dad that he is so pleased to give him the good news that he is doing great. No change in the past year... Keep up the good work and see him in a few months...

The only thing the doc did say is that he would have liked to see him a bit less stiff so the Baclfron is now going to be 10mg 3 times a day to work him up to 60 mg a day... Anyone else on this med and if so how much?

The PT told dad that if he is more comfortable using a cart for long distance use then he can get a Rollator... Dad was so so about this but said that he will have it for when he feels he needs it...

Also anyone have the breathing value test done and if so what is a good score?


I am so glad that your fathers visit went so well. I know it's hard not know what the doctor is going to say. I don't take the meds. he does i can't help ya there. I did have a breath test but i don't think it was the same one he did cause i have no idea what a good score would be. All the doctor told me,, was that my lungs were still doing pretty good. But if i started having more trouble breathing he would have to send me to a lung specialist
Sorry i couldnt' be of more help. I pray you and your father well.
wewillbeatthis said:
The only thing the doc did say is that he would have liked to see him a bit less stiff so the Baclfron is now going to be 10mg 3 times a day to work him up to 60 mg a day... Anyone else on this med and if so how much?...
Also anyone have the breathing value test done and if so what is a good score?


Hi Jen, With no change in the past year it sounds like your father is doing exceptionally well. That's a very good sign and probably means he has unusually slow progression. I have been taking baclofen for about 5 years. I take more in the winter when it is cold and I am stiffer. Currently I take 20 mg 2x day. In the summer I take less. It helps a bit with stiffness. Maybe I should increase my dosage.

Pulmonary function testing is done to measure breathing capacity. One of the more significant tests is FVC - Forced Vital Capacity. It is a measure of how much of your lung capacity is being used compared to what it should be. Normal is 100%. You might blow a few percent more or less and still be normal. People can function down to about 50% without intervention. Some can do ok with even less. I just had mine tested last month and I had 93% so for 5 years after diagnosed I'm pleased with that. Here's a link that discusses some of the tests that are done as part of pulmonary function evaluation.
Good sight John. A lot of useful information and no one is trying to sell you crap.
Thank your for your replys....

Marlo thanks for the kind words....

John that site was great I thank you for that...

Dad seems to be much more stiffer on colder days as well. He is now taking 10MG 3 times a day. I guess we will know in a few days if it is really making a difference...

The FVC is the test was the only test that I was real worried about. They did this test at the very end after 3 hours of 5 different doctors coming in and and out and doing there own little tests. Dad for whatever reason was doing the test wrong he would suck in a huge amount and blow hard into the pipe and then blow more and more and the nurse kept telling him know just one big blow. It was a rushed period and then they did the pulse oximetry and never told us any results.... I worry to much I know...

Question though dad had eaten and drank water about 1/2 hour before this test and the page says that this would not be an accurate reading. This is the first that they did this test. I would think that they would have to do this a few more times before being able to judge an incline or decline correct?

Hi Jen. It surprises me that they would say not to eat or drink unless it was a huge meal. I wouldn't think a full stomach would affect your breathing unless there was concern that it would press on your diaphram. They will have to do at least a couple of function tests to judge HIS decline but the tests are scored as a percentage of normal for a man his size and age and whether he smoked and a few other criteria.

See this is why you are the best you know everything... I read a few different sites and although they stated things in reference to age, size, and other factors I saw nothing that had to do with percentage of the average....

I guess like you confirmed being that this was his first they will have to see what the next few are to know the normal for him. Not to mentation that he did the test three times and still did not have it right. We were laughing cause he just did not get it.. May I ask what yours is?


The first time Henry did a pulmary test he blew 119%. That was in 1999. He stayed in the range of 90 to 100 for about 3 years and then it started to slowly decline. The last test he had was when he had his feeding tube put in and he was about 55%. He did not really have a lot of difficulty breathing, I guess he was one of the lucky ones. I think that the use of any breathing machinery is vital for comfort and for those who have a hard time breathing. We used a bi pap, no trach. Henry did not want one. Anyway, these tests are a part of the clinic tests that they do when you go to the als clinics. I hope that you are fine and that you are feeling good. Take care.

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