Firefly
Active member
- Joined
- Feb 1, 2016
- Messages
- 47
- Reason
- PALS
- Diagnosis
- 12/2015
- Country
- US
- State
- Or
- City
- Portland
Hi everyone,
I am newly diagnosed (12-29-15) with ALS. Since my dx, I've been devastated.
My mom passed away in August and I was in a pretty deep depression over that when I got my dx a couple month later. I feel like I was hit over the head with a sledgehammer, and that wasn't enough so I then got hit with a 2x4.
The following is my story, (so far). I am an only child and was taking care of my mom who had dementia. It was very, very stressful and sad as she was a huge life part of my life.
I thought even though she was declining, (she still recognized me), she would be
with me for many years. She had a fatal heart attack Aug 2015 in the adult foster care she had just moved into.
One month prior to that (July 2015), I was at work and had a hard time saying heart monitor, (I worked in Cardiology). After that, I started having difficulty with many words. My friends thought it was the phone, or that I was imagining things.
I first saw my PCP who thought it was either dry mouth or some kind of drug interaction. I started using Bactine products for dry mouth and went to the dentist to see if I had some kind of mouth fungus.
Finally, my best friend flew in to to stay with me in September to help me plan
a memorial for my mom. It was then she could see I was having difficulty with my speech.
I made another appointment to see my PCP and took her with me. She convinced him she also thought something was wrong.
Fast forward, I saw a Neurologist, had a positive EMG/NCV. Of course process of elimination first, i.e. MRI, which I did under anesthesia because I am so claustrophobic, Myasthenia gravis blood test, Lyme disease, copper test etc. My MRI was normal.
I had a second opinion with another Neurologist at a different hospital. She also thinks it's ALS.
At this time, it is my speech and breathing that is mostly compromised. My swallowing is okay, but drinking liquids is a little difficult. I have some weakness in my right arm and hand, and it feels like my left hand maybe a little weaker but that might be my imagination.
I will eventually quit my job, I am currently on short term disability. I've been to two support group meetings; which are very helpful but they're only once per month. I've am also seeing a therapist.
I know it is new, so I am going through the grieving process, but when I think about how this journey will end I feel devastated. I've seen people who have this dreadful disease, who smile and seem content, I am hoping I can reach that place but right now it feels impossible.
Thank you for letting me share my story. I wish everyone peace and love.
I am newly diagnosed (12-29-15) with ALS. Since my dx, I've been devastated.
My mom passed away in August and I was in a pretty deep depression over that when I got my dx a couple month later. I feel like I was hit over the head with a sledgehammer, and that wasn't enough so I then got hit with a 2x4.
The following is my story, (so far). I am an only child and was taking care of my mom who had dementia. It was very, very stressful and sad as she was a huge life part of my life.
I thought even though she was declining, (she still recognized me), she would be
with me for many years. She had a fatal heart attack Aug 2015 in the adult foster care she had just moved into.
One month prior to that (July 2015), I was at work and had a hard time saying heart monitor, (I worked in Cardiology). After that, I started having difficulty with many words. My friends thought it was the phone, or that I was imagining things.
I first saw my PCP who thought it was either dry mouth or some kind of drug interaction. I started using Bactine products for dry mouth and went to the dentist to see if I had some kind of mouth fungus.
Finally, my best friend flew in to to stay with me in September to help me plan
a memorial for my mom. It was then she could see I was having difficulty with my speech.
I made another appointment to see my PCP and took her with me. She convinced him she also thought something was wrong.
Fast forward, I saw a Neurologist, had a positive EMG/NCV. Of course process of elimination first, i.e. MRI, which I did under anesthesia because I am so claustrophobic, Myasthenia gravis blood test, Lyme disease, copper test etc. My MRI was normal.
I had a second opinion with another Neurologist at a different hospital. She also thinks it's ALS.
At this time, it is my speech and breathing that is mostly compromised. My swallowing is okay, but drinking liquids is a little difficult. I have some weakness in my right arm and hand, and it feels like my left hand maybe a little weaker but that might be my imagination.
I will eventually quit my job, I am currently on short term disability. I've been to two support group meetings; which are very helpful but they're only once per month. I've am also seeing a therapist.
I know it is new, so I am going through the grieving process, but when I think about how this journey will end I feel devastated. I've seen people who have this dreadful disease, who smile and seem content, I am hoping I can reach that place but right now it feels impossible.
Thank you for letting me share my story. I wish everyone peace and love.