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joe’s Story

Site created on August 14, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We do also use Facebook for some information, mostly done on a private fb group.
I was hesitant on making a caring bridge since we do have the private fb page. However I think this would be a way of documenting more of what we are dealing with and keeping friends updated.

October 29, 2020 Joe was diagnosed with with Lou Gehrig’s Disease - ALS. The Doctors are willing to say he most likely had it in 2019 as well.

Joe has lost all use of his legs. He’s in a wheelchair now. Transferring to bed and the toilet and things like this have become very hard due to his loss of strength in his shoulders.
Joe does still drive with hand controls. However with the left hand and shoulder going. We are uncertain how much longer he will be able to drive. We’ve been so grateful for things like hand controls and the van with wheelchair access. So awesome to be able
to keep a few things as normal as we can.
Which our new normal is change. Literally every week something else changes.
One thing that hasn’t changed is our love and laughter. Praise the lord.
We definitely have lots of tears but also lots of laughs that bring us to tears.

We see Emory and a few other doctors now. Really we are finding that Emory is very much about research and also the ALS association is good in helping learn as we go.
We have learned so much and have so much more
to learn as we navigate this journey.

A few things you deal with with ALS ( thus far)

Major Feet swelling
Paralyzed body
Immobile due to being paralyzed
Hard to get in and out of bed due to having to transfer from chair. Praise God the chair raises up and that helps.
Fasciculations ( twitching ) that eats fat first, then eats the muscle.
Cramps
Loss of ability to dress yourself.
Can’t get into certain restrooms with your chair

There’s so much more that at the moment I can say we haven’t faced that many of our friends we’ve met on this journey are dealing with. It’s quite grueling and just overwhelming to think about.

That’s about all right this minute.

We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Alisa Cain — Aug 30, 2021

We met up with our original Dr. McCasland last week. We will continue seeing Emory’s clinic and the also the original Dr.

We think we may do an infusion introduced to us this past week from Dr McCasland We’ve heard mixed reviews on it.

Then there’s the fees. It’s $150.000 per year on average. Not sure, but hopeful that insurance will pay for it if we decide to do it.

It’s so hard to know if any of the things available really do anything. The data isn’t really too convincing.

So…

Please keep us in prayer to make the right decision on this infusion. And many more decisions that will arise in the near future.

Read More of the journal titled "August 30, 2021"

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