Bulbar Onset Diagnosis - Nasal blockage

[jcmatch]

Hi, I'm back! After my husband's diagnosis a couple of months ago, we have been travelling and visiting friends and family so our feet haven't touched the ground. but back to reality now for a few weeks before we go off again!

Firstly, thank you all so much for taking time to reply to mine and other newly diagnosed PALs/CALs threads. It is an enormous help and I know it takes up valuable time and energy on your parts. We took the intial advice given and have now finished banking his voice with ModelTalker - really helpful people and easy to use software.

My next question, my husband's bulbar onset started with slurred and slow speech, it has now become very nasally and he feels like he has permanent cattarh, but can't clear it by trying to clear his throat.

Does anyone have any miracle cure or advice please on what he could try?

Also, his breathing is certainly starting to become compromised, he is at 95% sats and 400litres PVF. Are there any information sheets for exercises to help his breathing/sleep easier at night before he has to look at NIV. We have our next appointment at the chest clinic middle of September.

Thank you for any help.
JC

 

[Atsugi]

Could he be stuffed up from traveling through so many allergens, unknown viruses, and airplane recycled air?

Ask his doctor if Benadryl, sudafed or BIPAP might help.

 

[jcmatch]

Thanks Mike for replying. I wasn't sure if this was a common symptom or not? It could be an allergy as you say I just don't want to keep making doctors trips if not necessary we seem to be living our lives around appointments at the moment!

JC

 

[affected]

Great to hear you have been travelling and using your time to live

Citrus drinks or alka seltzer could help.

It's a common thing with bulbar.

You can search breath stacking here, then look at why we recommend bipap early and the benefits he could get in quality of life.

 

[kellykago]

Breath stacking exercises actually improved my respiratory scores in three months.

 

[GregK]

Breath stacking exercises actually improved my respiratory scores in three months.

What is your specific technique?

 

[jcmatch]

Thank you for your replies. Tillie, I know you're not a doctor but what dosage of Alka Seltzer, how often and what sort of citrus drinks please? All advice greatly appreciated.

Is there information I can access somewhere on breath stacking please?

Many thanks
JC

 

[GregK]

All of your above-mentioned questions can be answered with a Search.

Give it a shot!

 

[affected]

jcmatch, never be afraid to ask

Hopefully this will link directly to the post by our Tripete and how he is using alka seltzer!

https://www.alsforums.com/forum/people-als-pals/29099-mucus-again-als-diet.html#post344214

read his posts all through that thread as it's really interesting what he discovered about it.

 

[kellykago]

Breath in deep through nose, second breath then third breath trying to fill lungs to capacity hold 3-4 seconds exhale through mouth. Repeat 5 x at least three times per day