New member intro

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May 26, 2021
Lost a loved one

Wasn‘t sure how to post an introduction but I will try to do that. I just asked about portable suction in the tips gadgets section.

He is on hospice and the social worker is going to check into it. I don’t have a problem buying really, I just wanted to see what others thought about them.

Welcome -- feel free to post more about your situation and PALS in this thread.

Btw, I used to live in South Brunswick.

Hi to all,

Not a new caregiver but new to posting.

My husband was diagnosed at the end of Feb 2020. He may have been “lucky” in that his first symptoms were noticed in Oct 2019 - so a fairly short time to diagnosis. And maybe “unlucky” because that seemed to have pointed to a faster progression.

I‘m using lucky in quotation marks because there isn’t anything lucky in being diagnosed with this disease. I mean that after learning how long it takes many to get diagnosed and what hardships they go through, I’m thankful that he was diagnosed quickly.

His symptoms started in left arm and leg but progressed quickly. Between Feb 2020 and Spring 2021, his arm and hand weakness progressed to both sides. His legs continued to weaken and he spent a short time with a rollator, then push chair then loaner pwc and then his own pwc with head array. He developed bulbar symptoms and his voice/speech became greatly affected. He banked his voice and as swallowing became more difficult, he had a PEG tube inserted.

He also developed pseudo bulbar symptoms but the Neudexta has worked very well.

The speed at which the DME equipement came into our life was head spinning. The things that at first are feared (hoyer, bipap, suction etc) become praised. I practically cried when we got the loaner electric hoyer!

When he couldn’t use his hands, he used voice to text and then as his voice went, he started using a Zono head mouse and foot switch on an iPad with Proloquo4txt and his Acapela voice. He can still use this but I don’t know what he’ll do when he needs to use eyegaze/tracker. He seems resistant to a windows device.

He participated in the Healy trial and showed a marked decline during the time in the trial.

His breathing has declined and he is now on hospice which has been a support.

We’re finding managing the mucus challenging as we try the different meds and strategies.

Having the support of others who know what traveling this road means is invaluable. We have a teenager too so that is another layer of challenge.

I appreciate the warmth of the group here and the great tips and info I have found have really helped in caring for my husband.

Thanks so much
I am sorry to hear of the rapid progression but glad that you are finding ways to access what he needs.

He does not have to switch to Windows to use eye gaze. See eyegaze dot com.
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