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
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