FamilialALS?
Distinguished member
- Joined
- Aug 24, 2015
- Messages
- 118
- Reason
- Lost a loved one
- Diagnosis
- 10/2014
- Country
- US
- State
- CA
- City
- Mission Viejo
I have been a guest to this forum for a year. My mom started showing symptoms suspicios for bulbar onset ALS or a stroke this time last year. (Her sister died from limb onset ALS in 2013.) Mom's official diagnosis of ALS came on October 14, 2014 from the ALS clinic at UC Irvine. Shortly after she documented her wishes and got all of her affairs in order.
My mom has been single for all my adult life, and fiercely independent. I am her primary caregiver. She had subtle speech changes that started about a year and a half ago. The speech changes progressed to slurring by last July and cognitive decline was progressing at a weekly pace. She is 69 years young and I am married and still raising my teenagers. The stress and challenges of being in charge of making her health care decisions and implementing them is all too familiar to all of you.
Mom's neuro agreed that her FTD is severe enough that she does not understand a lot, add to that her speech is gone. She had her PEG placed in May, a very good thing for her. She has a trilogy and cough assist. She can still walk, but is unaware of being safety conscious.
Tilly's posts about caring for her husband have helped me tremendously. The daily frustrations and fears in caring for my mom are so similiar. This site has been the best resource for getting information about the disease, what to expect, how to stay ahead of it, and most importantly how to deal with the emotional demands of it! I'm so grateful for the insight and support that Tilly, Mike, Nikki, and others pour into their posts.
Since March, she has been living with me Monday thru Friday. On the weekends she is at her house supervised by my older brother who still lives with her. My sister drives in from Arizona 5-7 days per month to stay with her as well.
My mom has been single for all my adult life, and fiercely independent. I am her primary caregiver. She had subtle speech changes that started about a year and a half ago. The speech changes progressed to slurring by last July and cognitive decline was progressing at a weekly pace. She is 69 years young and I am married and still raising my teenagers. The stress and challenges of being in charge of making her health care decisions and implementing them is all too familiar to all of you.
Mom's neuro agreed that her FTD is severe enough that she does not understand a lot, add to that her speech is gone. She had her PEG placed in May, a very good thing for her. She has a trilogy and cough assist. She can still walk, but is unaware of being safety conscious.
Tilly's posts about caring for her husband have helped me tremendously. The daily frustrations and fears in caring for my mom are so similiar. This site has been the best resource for getting information about the disease, what to expect, how to stay ahead of it, and most importantly how to deal with the emotional demands of it! I'm so grateful for the insight and support that Tilly, Mike, Nikki, and others pour into their posts.
Since March, she has been living with me Monday thru Friday. On the weekends she is at her house supervised by my older brother who still lives with her. My sister drives in from Arizona 5-7 days per month to stay with her as well.