Things are progressing

[bmra]

Hi all,
I posted a while back about my father in law. He has not been diagnosed yet but it certainly seems imminent. He has bulbar onset symptoms. He returns to ALS clinic at Columbia at the end of the month.
He learned some great strategies for eating and drinking from the clinic and the choking has decreased significantly.
However, now we have a new issue...breathing. He is so easily winded and has on occasion had a very difficult time catching his breath. He said that at his last visit he was at 84% but that was 3 months ago and we didn't notice any breathing issues then. I am worried about how low it must be now. Am I correct in my understanding that a bi pap might be our next step?
This is all so overwhelming. It was a year ago this month that he started complaining of problems with his voice...and it seems like the last three months things have started progressing more quickly.
Thanks,
Michelle

 

[BrianD]

Yes, Bipap would be something to specifically ask about. I hope you get some good information at your upcoming clinic.

And just to possibly prepare you, you may not get an ALS diag no sis until they see some limb involvement. You can look into the El Escorial criteria to get a definite diag no sis.

 

[jamiem]

I am right there with him. Appt 3 months ago I was not approved for bipap but since then I am having more trouble breathing. Will go back for second EMG and breathing test next Thursday. Will let you know. Your father in law is lucky to have family that loves him. Brain is right - get ready for no ALS diagnosis so no medicare. I have diagnosis of Pseudo bulbar Palsy and am as bad off in terms of a future as anyone with a true ALS diagnosis.

 

[NeverPan]

BMRA, I would have to agree that bipap would be worth a mention. I have been diagnosed with Dysphagia (difficulty swallowing). I have difficulty breathing but only when lying on my back. I have found that turning on my left side helps me sleep better. I too have not had an ALS diag. I also had a sleep study, and they may recommend this along with a new PFT test to determine if bipap is needed.

 

[Ms. Pie]

A feeding tube aka a peg is something you should talk to his doctor too. A peg will decrease anxiety and increase safety from aspirating food while choking and avoiding pneumonia from aspiration. A peg will also improve quality of life.

 

[brooksea]

The BiPap would be beneficial and will help with exhaustion, too. Be aware that Medicare will not approve a BiPap unless FVC is at 50%. I see your FIL is not diagnosed yet, but usually insurance companies follow Medicare's lead. Good luck at the appointment, he may want to not give the breathing test his best shot that day.

 

[Aviva]

Try a consultation with Dr. Bach in Newark, UMDMJ. He has a wonderful system that has kept my Dad's breathing going despite advanced ALS symptoms.

 

[Miss]

Some people have had a Trilogy (instead of a traditional BiPap) approved by Medicare before the FVC fell to 50%. Try going that route. However, Medicare will keep track of whether or not it is being used, so make sure he plans to use it at night.

 

[bmra]

Thank you everyone for your replies. I appreciate the wealth of knowledge you share...although it would be better if none of us had a need for all of this.
His last 2 EMG tests were inconclusive. I think he will have another at his appt in November. I was very upset last time I posted about the lack of diagnosis but I understand how it all works a little better. You are right, I think they are waiting for the progression to the limbs before they diagnose him. He is starting to complain about weakness in his hand and I have noticed increased difficulty with fine motor tasks such as opening a sugar packet. Not sure if it will be of any clinical significance yet.
He has started looking into the va benefits as well since he is a veteran but again i think he needs the diagnosis tonics forward?
Michelle
Anyway, thanks again for your support. I have a feeling I will be posting more often!

 

[panguinjen]

No, he can go and they will do their own, take what records you can... Depending on where you are, the sooner you start the better. Miss has had great success and has a wealth of info!

Jen

 

[genavin]

My husband also needed a bi-pap, which was not covered by insurance. The fine folks at our local ALS Association chapter made sure he got one on loan. The only things we had to pay for were the mask and tubing and the home visit to teach us how to use it.

 

[SueG]

My clinic qualified me for bipap, even tho fvc was above 50%, with MIP (maximum inspiratory pressure) test. Early use of bipap, along with keeping weight up (hence feeding tube suggestion), can increase a pALS longevity, research shows. I sleep so much better with mine!
Good luck.
Sue

 

[BrianD]

It can be important to sometimes think about what the goal is when performing those breathing tests. The therapists will want you to try as hard as you possibly can. While I never would condone fraud, it may be appropriate to give a good effort instead of absolute best if you are trying to qualify for Bipap sooner rather than later. Early use of Bipap is helpful, so getting it as soon as possible can pay off.

 

[bmra]

That all makes a lot of sense. Right now his weight is good and he is eating well. We have discussed the possibility of the peg tube when he is ready (which he is not). I will definately tell him about the effort level at his next breathing test...also, he is traveling by airplane at the end of the month-I don't know if this is silly question, but will that affect his breathing at all?

 

[vzandt]

It can be important to sometimes think about what the goal is when performing those breathing tests. The therapists will want you to try as hard as you possibly can. While I never would condone fraud, it may be appropriate to give a good effort instead of absolute best if you are trying to qualify for Bipap sooner rather than later. Early use of Bipap is helpful, so getting it as soon as possible can pay off.

Good point