Overdue hello

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pmiles116

New member
Joined
Feb 10, 2020
Messages
3
Reason
PALS
Diagnosis
04/2018
Country
US
State
FL
City
Tampa
Hello all,

I started lurking sometime in 2017 and finally joined back in February. But, I’ve yet to introduce myself.

I figured now is as good of time as any since I’m laying in a hospital bed 7 hours removed from getting my PEG. Hopefully the pain subsides soon.

My journey started in 2017. I noticed fasciculations in my right leg coupled with some weakness. I didn’t think much of it. I soon noticed the fasciculations in other muscles as well. I was dropping things while teaching my classes, which was weird to me. I went to a local GP who referred me every specialist you can think of, and I had MRIs just about everywhere. He wanted to send me to a therapist but finally sent me to a local neurologist. After a few visits and an EMG on each limb, the neuro suspected ALS and referred me to Mayo.

Mayo did several tests to try and find other causes. I’m sure many of you had the same tests. Meanwhile, I started having issues speaking. Sure makes teaching tough! Breathing too was beginning to be an issue. After more visits, we decided to go to USF since it’s fairly close by.

Long story short, and nearly two years after my initial symptoms, I learned what “definite ALS” meant. After much planning and prayer, I retired from teaching last November. I just couldn’t do my job anymore, one that I loved. Breathing was such an issue I couldn’t complete a lesson.

Currently, my FVC is very low. I wear my Trilogy nearly all day. I have trouble speaking, more than when I stopped teaching. And I have more weakness in my legs and arms. Thankfully, my power chair came the week before Florida shut down due to COVID.

Through all this, I’ve learned to count my blessings. I have a wonderful wife who is as strong an advocate as you’d want. Our daughter just turned one. And while I can’t really play with her, she sure makes retirement fun! I’m an Elder at my church, and while serving has been very difficult, we have a great support system.

Anyway, just wanted to say a long overdue “hi” and also thank you, as many of your posts have been of great benefit to my family.

Phillip
 
Hi Phillip, welcome aboard.
 
Glad you introduced yourself, Phillip. I hope your recovery from the procedure is smooth. There's lots of good advice here about caring for your tube site and using commercial formulas, alternative formulas, or blended real food.

Best,
Laurie
 
Sorry to have to welcome you here...
 
Glad you found us. You will find a wonderful group of people who will help you and your wife on this journey. I also retired from teaching last May after 32 years in elementary school. One of the hardest part of teaching was all the talking that I couldn't perform for 7 hours. I totally understand.
 
“Hi” Phillip. Thanks for the intro… glad to read you have a solid
support base and system. You can now add this Forum to both.

I like “Hi” over “Welcome Aboard”. When I’ve heard that before…
it wasn’t for this kind of cruise. :cautious:

Welcome...
 
Welcome Phillip! Let us know if we can help!

My best...

Jim
 
Welcome Phillip, sorry you have to be here. Your in the company from what I've experienced some of the most amazing people. You'll find alot of knowledge here.
 
Welcome. Since you have been lurking for awhile, you already know what a wonderful and helpful group of folks the members of this forum are.

Steve
 
welcome, glad you decided to say hi :)
 
Nice to hear from you man. If I can ever be of assistance to you with technology type stuff (home automation, computer/phone accessibility on a budget) don't hesitate to ask. Take care, Jim
 
Welcome Phillip. I am also a sidelined teacher from the other coast of Florida. Your faith will get you through.
 
Hi Phil,
It really sucks that you had to join us, but so be it. Now just live life as best as you can.
Al
 
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