Has anyone heard from Mark?

[hopingforthebest]

A few months ago, Mark, on the PMA forum, had posted that he was going in for trach/vent. If I missed his posts since surgery, could you let me know where they are.

When I started on site, he seemed to be the PAL that was closest to the symptoms my husband was experiencing.

If you, Mark, read this post, I wish you well and hope to hear from you when you can.

Take care.

Patty & George

[hopingforcure]

Hi, I saw Mark was on Yesterday, maybe you could PM him. I love how member's here are always looking out and connecting with one another.

[hopingforthebest]

Thanks! Will wait and hope Mark will reply to our good wishes. Great idea though.

Take care!

Patty

[Mark]

Hi Patty and George:

Thanks so much for your concern. My tracheostomy has led to far more pulmonary complications and hospitalizations for bronchitis and pneumonia I ever expected. My diaphragm has continued to decline and as of yesterday I am on the ventilator around-the-clock but can still speak when my tracheostomy cuff is down so at least for the moment I can still use my voice recognition software. Next week I had a test to look at swallowing and aspiration and may need to use a feeding tube during the day as well as continuing at night. I'm not going to give up eating without a fight!

How are the two of you doing?

Mark

[hopingforthebest]

Hey Mark

He is doing pretty good! Is on bipap 24/7, fvc's low at 20%. When he is on the bipap he is great and does super. We have a battery backup and my son took a Stanely tool box and drilled holes in lower and upper and side, it has wheels and an extended handle and I have taken George to grandson's soccer games etc.

Finally, after one year, he is "talking" about (but not ready to discuss with ALS clinic) that he would consider trach/vent when time comes and bipap does not meet his needs.
So that is a milestone for George.

I was concerned because I searched and found nothing on your progress since surgery.

You have been in my daily prayers for extended life and quality living!

Take care dear Mark.

Patty

[Mark]

Hi Patty,

Sounds like George is doing fairly well. I am glad. I forgot to mention my legs are starting to show some weakness which first manifested as difficulty climbing steps. Fortunately I can still walk without noticing any trouble there.

Thanks again for your support. Hope you're doing well yourself.

Mark

[maryannuz]

Hi My name ia Maryann and my husband Nick was just DX with ALS he works in construction and might have to stop work. My question how do you go about getting SSI insurance?

[Al]

Hi maryann. Sorry about your husband. If you go to the People With ALS forum there is a sticky in there that has SSD information.

AL.