pscheffel
Distinguished member
- Joined
- Apr 13, 2012
- Messages
- 146
- Reason
- Lost a loved one
- Diagnosis
- 12/2011
- Country
- US
- State
- Tx
- City
- NB
My Mom was diagnosed with Bulbar Onset ALS 12/7/2011. Symptom onset was around 5/2011, after several months of testing for anything else, EMG confirmed our worst fear on 12/7/2011. She participated in a drug research for about 6 weeks, to help strengthen her muscles, but we did not see too much improvement. So we started her on the bipap in 2/2012 and feeding tube late 2/2012. She seems to be holding steady in regards to her weight, slurred speech, and difficulty swallowing. My next concern is her showing signs of FTD, frontotemporal dementia, which has been confirmed that she has it. Prior to ALS, she was very loving, caring, had a strong voice, and loved to engage in conversation. Now, she is withdrawn mostly and very quiet. I have 3 boys, youngest being only 3 weeks. The older 2 are 7 years and 4 years old. She is very distant with them as well, when before they were her world. It is very difficult and heart-breaking that this disease has taken her loving personality away. My Mom is a mere 53 years old.
We are learning as we go and just handling it on a day by day basis.
She is on meds, including meds for depression, but she is still very distant and quiet.
My heart goes out to those that are forced to face this disease.
Thanks.
We are learning as we go and just handling it on a day by day basis.
She is on meds, including meds for depression, but she is still very distant and quiet.
My heart goes out to those that are forced to face this disease.
Thanks.