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.
