Old 03-14-2019, 07:55 PM #1 (permalink)
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Default Breathing regular checks

Hey everyone!

Today my father had a breathing exam and, as it has been the case since he is testes, the results were perfect. In the past two years and a half since first measured, there has been no observable decline as measured by any indication of respiratory function.

Given these results, the doctor decided to postpone the next examination until September 15, 7 months from now.

I wanted to ask people if you thought this decision is warranted. I am very happy that my dad is still fine, but 6 months for someone with MND seems like a long long timeline.

What do people think? Should we push for an earlier date?

Thanks
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Old 03-14-2019, 08:45 PM #2 (permalink)
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Default Re: Breathing regular checks

I let my partner be in charge of his Drs appointments - they take energy that he often would like for other things. He usually goes with his dr's recommendations. My impression is when the Drs in the ALS clinic see a slow decline they schedule appointments further apart ( like 6 months - that's not uncommon here) and when the decline is faster the next appointment is in 2-3 months.

A year ago his breathing was great, 6 months ago it was FVC 70% and in January it was at 44%. He did not need a test to know that things had gotten worse. We got a trilogy then. He is now slowly getting used to it - thanks to Laurie from this forum here who helped us find better settings for him.

For us tests put numbers on things that he knows already and tells me about. He wants to stay away from life extending measures so he was not keen on starting BiPAP early - it's supposed to have benefits when started early. We did not even know that at the time. Rather than starting BiPAP early he wanted to be as free as he could be, without being hooked up to any machine or tubes.

He noticed that his breathing had gotten worse when he was not able to breathe comfortably while lying on his back. He also noticed that the airways in his head are 'closing' when his head or neck are in certain positions. He changes his position and adjusts to the changes as best as is possible. So far this still works for him.
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Old 03-14-2019, 08:59 PM #3 (permalink)
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Default Re: Breathing regular checks

7 months may be ok, and he could certainly request that he be checked sooner if he notices a change in his breathing.

The problem with that is that changes are often subtle. Sometimes weakening of respiratory muscles may be manifested by development of headaches or increased fatigue rather than by noticeable difficulty breathing.

There’s increasing evidence that early implementation of BiPAP can extend life, and certainly quality of life, in ALS by reducing work of breathing, even if the PALS is unaware of shortness of breath.

So the answer is complex and partly depends on goals. If the PALS desires to slow progression and conserve energy, then more frequent monitoring may be indicated. Not all PALS choose to use BiPAP.
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Old 03-15-2019, 03:38 AM #4 (permalink)
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Default Re: Breathing regular checks

My dad is completely open for an early implementation of BiPAP and would definitively choose it if it were needed or recommended. However, so far he has not complained about breathing and his FVC remains above 100% (other measures are good too).

I guess we will wait and see how it goes. We will keep this appointment but if there is any sign that his breathing is worsening we might ask for an earlier visit... I hope the things stay like this: the doctor yesterday was very surprised about the test -he told my dad that, with respect to breathing, he was just like a healthy man of his age.
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Old 03-15-2019, 03:07 PM #5 (permalink)
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Default Re: Breathing regular checks

I just went to clinic visits every 6 months. As a slow progresser, my neurologist and I agreed that every 6 months is enough. With breathing being the life ending symptom, and no changes over the past while he doesn't need the hassle or exposure to sick people by going to the hospital. This is good news. I am assuming he can call and be seen quicker if things start to go faster.
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Emanol (03-17-2019)
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