support for children and grandchildren of PALS

[pinky]

I was personally very grateful to see a camp offerred to the minor children and grandchildren of PALS. As a CALS I was overwhelmed with gratitude when I saw the notice. Just wonderful, I thought, I wept and sent the notice on to my daughters in law who might want to participate with our grandchildren. My heart bleeds for them to have lost their once normal relationship with myself and my husband through this now five year stint dealing with ALS. My husband had respiratory onset, is now almost totally paralysed, has been on the ventilator and tube feeding for five years this past October. The effects upon our family have been painful for me see. Thank you to the ALS association for this new (to me) program.

 

[KateEmerson]

Hi Pinky,

I was happy to hear that you found something that brought you and your family some joy during this difficult journey.

I read your earlier post from 2014 asking if there were others who had respiritory onset, unfortunately I didn't find this forum until 2016. My husband was respiritory onset and was trached/vented in September 2013 before there was any suspicion of a neurological problem.

I'm glad you came back to the forum and hope we can give you some support going forward, Kate

 

[pinky]

Hello Kate,

We are still going here with Mike, my husband using a ventilator and now GJ tube to sustain his life. He began in Oct. 2014 with functioning limbs, the ability to walk, talk with his cuff down and use his hands very well. He is now almost completely without motion in his limbs. He no longer can use his voice. He can still sit with support (although riding in cars is too hard), move his left hand ever so slightly, and he still has facial expressions. He has not adjusted well to eye gaze use, so he is all there but minimally communicative.

It has been five years. I have a lot of help, and I am grateful for his presence in everyone's lives, but also seriously weary at times.

Have you had a similar path? There are so few people with respiratory onset and even fewer who choose the ventilator and live years rather than months. I can easily understand how someone could be trached before diagnosis with this presentation. Mike entered the hospital with respiratory failure to obtain diagnosis. He went home with bipap and chose the trach procedure 10 weeks later.

He was dismayed at the beginning at how confined his treatment left him. This, of course, has been hard on our children who are supportive, and our grandchildren, some of whom, will not remember his healthy self.

Well, it seems I have to repeat all that once in a while. When I go to caregivers' support meetings, I realize we all end up at the same place after a while, but our path has been unusual. I hope you have good support.

Louise

 

[pinky]

Dear Kate,
Thank you for your response. If you have a chance, please share with me how things have progressed for your husband and yourself
as his caregiver. There are so few with respiratory onset. Pinky

 

[lgelb]

Louise, as noted on Kate's profile (under her username on the left), her husband died.

Best,
Laurie