I am tired. My FVC is about 30. I have no regrets about waiting so long to get feeding tube. My family is drained physically, emotionally, and financially, although none of them complain. I still feel enormous guilt.
Part of me wants to forgo the procedure, enter hospice ' and be done with...
Hi all,
My sister-in-law (my brother's wife) is in the last stages of bulbar ALS -- only a bit of movement possible in fingertips and lower legs. She can still talk, but my brother can interpret only about half of what she says. She coughs and chokes on her saliva many times during the day. Her...
Greetings all.. The time has come to start getting the house on the Market.. My Daughter and I just can't stay.. although Liz didn't pass on here it's just a comfortable
Place.. at night I can still hear the suction machine etc running. I know Liz would understand but after 22 years together...
Greetings All: It's been 9 months since Liz Passed after Our 5 Year ALS journey. Not a Day Goes by without thinking about her. Part of Me is emberassed to Say that I've started a new relationship. The guilt is horrible at times and other times I feel like I deserve some happiness after Being...
I tried to add this as a blog, but thought I would put it here as well.
Three Years
Today I celebrate the three-year anniversary of the worst day of my life. I was so scared that day, looking ahead to life in a wheelchair, giving up all independence, and being such a tremendous burden to my...
New here
My husband of 21 yrs was dx Oct 2015. He had symptoms in 2014 and started stumbling and falling in 2015. By Nov 2015, he could no longer dress, feed, or drive. I had to pack and sort our home and put it up for sale, so we could move closer to ALS Clinic. He is now on hospice and...
Today was one of the good days and at the end of the day... I realized... the reason it was so grand. Steve was tickled, happy and talked to me like he used to before ALS came into our lives.
Why did he choose today when there was nothing special going on? It was because I was my pre-ALS self...
It has been a long time since I dropped off of this forum. The losses of those I'd grown close to got to be too much for me. I grew to feel overwhelmed with a kind of "survivor guilt". And, it breaks my heart now to see who has passed, without me knowing.
However, it was good and much...
Hello,
I've been following this forum for quite some time but have never had the time to share. my husband was diagnosed with ftd 2014 ALS june 2015.
As of this morning he refuses any help with breathing issues..no oxygen no BiPAP no doctor visits no showering it's been almost 5 days again...
I have noticed a few changes with Steve regarding his sleep and his breathing. Today I had to insist that he actually sit down and talk to me. Apparently, the reason he is waking up so much at night is because he gets sinus congested and can't breath through his nose. He is on the Trilogy.
We...