Webinar on breathing

[Nikki J]

Presented by CCALS. The speaker founded the UPenn program. That program ( with which I am not familiar) covers the midAtlantic states including New Jersey. It may be something to explore. Welcome! You are invited to join a meeting: Breathing is Everything with Dr. John Hansen-Flaschen. After registering, you will receive a confirmation email about joining the meeting.
ETA I do not think this webinar is specifically about the program rather about respiratory issues in ALS. The program might be worth looking into though if you are in their service area

 

[Tomswife]

Just registered. Thanks!

 

[MupstateNY]

Is it really on a Sunday or is there something wrong with my calendar?

 

[Nikki J]

Yes it is a Sunday. The actual announcement I got specified Sunday. Presumably it was what worked best for the speaker. You are right Sundays are very unusual for this type of webinar

 

[KimT]

Thank you, Nikki.

 

[Mana]

Thank you!

 

[lisa g]

Thank you Nikki, I just registered.

 

[Tomswife]

This prompted me to look into what I should be doing to support Tom. I started some very basic deep breathing exercises and one with short breath and hold.
We have met with the pulmonary therapist at the clinic. But he only measures. No therapeutic advice. No one ever suggested breathing exercises. I asked for Bipap. No. He does not qualify. I feel like there is so much i dont know and i have spent so much time on the PWC and toilet shower dme.

 

[Nikki J]

Breath stacking?

 

[affected]

Tomswife you can search on breath stacking here and see lots of talk about it.
Don't feel like you are supposed to be superwoman, PWC and deciding on DME are valid important tasks for you.
Does your PALS take any interest in finding out anything for himself?

 

[KimT]

I did breath stacking and actually increased my FVC and SVC.
Youtube has lots of videos on it.

 

[Tomswife]

Nikki. PALS does not do anything with regard to understanding ALS and how to live with ALS. He has ALS and I think that has been overwhelming for him. Since his dx in August I am the lone ranger, thinking, doing, planning, etc. His care and everything about it is a full time job for me. We are retired so I have the time.
I would have thought the clinic should have educated us on this topic of breathing. But nope.

 

[MupstateNY]

I signed up for the webinar back when it was announced here, but they're not letting me in. Has anyone succeeded in getting into the webinar?

 

[Nikki J]

Just started now. Very late

 

[MupstateNY]

Just got in, apparently they got a late start.