Overdue hello

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
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,755
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Hi Phillip, welcome aboard.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,460
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
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
 

mytmouz

Active member
Joined
Aug 17, 2019
Messages
95
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
City
Pelahatchie
Sorry to have to welcome you here...
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
352
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
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.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,702
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
“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...
 

JimInVA

Forum Supporter
Senior member
Joined
May 29, 2014
Messages
834
Reason
CALS
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
Welcome Phillip! Let us know if we can help!

My best...

Jim
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
161
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
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.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,196
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
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
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,560
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
welcome, glad you decided to say hi :)
 

Jimi

Distinguished member
Joined
Sep 24, 2019
Messages
114
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
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
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,831
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Welcome Phillip. I am also a sidelined teacher from the other coast of Florida. Your faith will get you through.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
569
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
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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