ScottSmith
New member
- Joined
- Oct 30, 2020
- Messages
- 7
- Reason
- PALS
- Diagnosis
- 10/2020
- Country
- US
- State
- KS
- City
- Kansas City
I'm a 39 year old father of a beautiful 16 month old little girl and the husband to a beautiful and pregnant wife (another girl on the way). My fears started back in May (2020) when I returned to my job from quarantine. I own a personal training studio and train clients as well. My speech seemed "off." I attributed it to having to wear a mask all day. I also noticed my ability to sing to my daughter was becoming problematic. I used to have a lovely voice and even had a recording contract from a label back in my 20's. So something was going on. Clients started to notice the speech and that's when I got real concerned. I also began to have fasciculations all over my upper body non stop. I initially just thought it was normal muscle recovery stuff from all the heavy weight lifting I like to do.
I went down the rabbit hole of google and pretty quickly diagnosed myself with Bulbar Onset ALS. I was so scared. I took my family to the pumpkin patch the following morning and just felt joyless cause I knew I was in trouble. I told my wife my concerns. She thought it was anxiety produced which isn't an awful assumption because I have been under a tremendous amount of stress re-opening the business and keeping it afloat during a pandemic, all while figuring out how to be a new dad.
So I got on a bunch of anxiety forums and even bfs forums and re-convinced myself that it wasn't ALS after all. I had never felt so relieved in my life. My strength (aside from a little weakness in my left hand) was still so high that I thought there was no way it could be ALS. I can still do pull-ups, pushups, shoulder presses, lunges, etc. all with a decent amount of weight. And my speech didn't seem to worsen. And if I talked slower and more clearly. No one really noticed except for those who knew me really well.
I went to a chiropractor hoping (desperately) that maybe some massage and adjustments would at least do something to help with the muscle twitching and weakness. She did some reflex tests and my heart sunk. I knew enough about brisk and asymmetrical reflexes from my research to know that I failed.
I had a panic attack and ended up in the ER. This was on Friday, October 23rd.
I was able to get into a neurologist the following Monday (26th). It did not go well. She suspected ALS and I was floored.
My wife did not take this well. She (my wife) then went down the google rabbit hole and had a melt down. I on the other hand continued to maintain a positive attitude and refused to believe it. How could I have all this twitching but no real loss in strength? I thought the twitching only happened when the nerves died or were dying, yet I was still getting stronger in the gym? It didn't add up to me.
The Neuro referred me to an ALS specialist and fortunately (I guess?) got me in that Wednesday the 28th for an exam and EMG. My wife came with me this time, and to be honest, at this point, she knew what the outcome was gonna be cause she was still doing research while I stayed willfully ignorant.
After the EMG the doctor sat down with us and said "I know this is hard..." And I pretty much don't remember anything past that point. He did say the words "I believe it's Bulbar Onset ALS" or some manner of that phrase but he quickly started talking about treatments and setting up some additional tests. To be honest I was too in shock. My wife, bless her heart, was so strong for me and took notes while the doctor spoke about next steps while I just hung my head in disbelief.
It's Friday, October 30th now, so my wife and I are on Day 2. We are trying to stay busy making plans and arrangements for my treatment and our finances. But man, we can't hold it together for more than an hour before a breakdown. We both feel guilty because we can't even be around our daughter right now. She is staying with the grandparents. It's just too heartbreaking to see the future we were building torpedoed like this. We can't find any joy because there is no future. I would love to hear from some people who have / are going through something similar and how you are coping and what strategies seem to work well. What would you tell someone on Day 2?
I went down the rabbit hole of google and pretty quickly diagnosed myself with Bulbar Onset ALS. I was so scared. I took my family to the pumpkin patch the following morning and just felt joyless cause I knew I was in trouble. I told my wife my concerns. She thought it was anxiety produced which isn't an awful assumption because I have been under a tremendous amount of stress re-opening the business and keeping it afloat during a pandemic, all while figuring out how to be a new dad.
So I got on a bunch of anxiety forums and even bfs forums and re-convinced myself that it wasn't ALS after all. I had never felt so relieved in my life. My strength (aside from a little weakness in my left hand) was still so high that I thought there was no way it could be ALS. I can still do pull-ups, pushups, shoulder presses, lunges, etc. all with a decent amount of weight. And my speech didn't seem to worsen. And if I talked slower and more clearly. No one really noticed except for those who knew me really well.
I went to a chiropractor hoping (desperately) that maybe some massage and adjustments would at least do something to help with the muscle twitching and weakness. She did some reflex tests and my heart sunk. I knew enough about brisk and asymmetrical reflexes from my research to know that I failed.
I had a panic attack and ended up in the ER. This was on Friday, October 23rd.
I was able to get into a neurologist the following Monday (26th). It did not go well. She suspected ALS and I was floored.
My wife did not take this well. She (my wife) then went down the google rabbit hole and had a melt down. I on the other hand continued to maintain a positive attitude and refused to believe it. How could I have all this twitching but no real loss in strength? I thought the twitching only happened when the nerves died or were dying, yet I was still getting stronger in the gym? It didn't add up to me.
The Neuro referred me to an ALS specialist and fortunately (I guess?) got me in that Wednesday the 28th for an exam and EMG. My wife came with me this time, and to be honest, at this point, she knew what the outcome was gonna be cause she was still doing research while I stayed willfully ignorant.
After the EMG the doctor sat down with us and said "I know this is hard..." And I pretty much don't remember anything past that point. He did say the words "I believe it's Bulbar Onset ALS" or some manner of that phrase but he quickly started talking about treatments and setting up some additional tests. To be honest I was too in shock. My wife, bless her heart, was so strong for me and took notes while the doctor spoke about next steps while I just hung my head in disbelief.
It's Friday, October 30th now, so my wife and I are on Day 2. We are trying to stay busy making plans and arrangements for my treatment and our finances. But man, we can't hold it together for more than an hour before a breakdown. We both feel guilty because we can't even be around our daughter right now. She is staying with the grandparents. It's just too heartbreaking to see the future we were building torpedoed like this. We can't find any joy because there is no future. I would love to hear from some people who have / are going through something similar and how you are coping and what strategies seem to work well. What would you tell someone on Day 2?