Mom diagnosed with Bulbar Onset ALS - 12/2011

[pscheffel]

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 Now, she is withdrawn mostly and very quiet.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.

 

[cubcake]

Hi there....I'm so sorry to meet you in this fashion, but know that you've come to the right place. This forum is full of the most caring, knowledgable people you'll ever meet. Welcome.

My husband also has bulbar ALS and language variant FTD. He is 55 years young, and prior to this, was the friendliest, most lovable outgoing man you ever met. We had symptom onset in June of 2010, we're diagnosed with FTD in Dec of that year, and with ALS in Oct of 2011.

Around the time between our diagnoses, he became very attached to me (Velcro syndrome) and very withdrawn from absolutely everyone else. He didn't want to see co- workers, friends, family, not even his mother. When I left, he would cry and look around pensively until I returned. Now, though, while he prefers that I'm with him, he looks forward to gatherings, playing "basketball" with friends, etc. I think back to before and I think he was just realizing and adjusting to his disability, his lack of speech, and learning to open up to people and allowing them to help him. It was a hard change for him as he was always the organizer and the one in control.

Your mom will go through lots of changes. Let her. And support her in whatever she chooses. Don't think that every step taken is forever, it could just be a phase.

I'll let some others give their 2 cents, but just know that our hearts are with you on this journey. Ask lots of questions and stay in contact. This is the most wonderful group of people you never wanted to know.

Feel free to PM me if you'd like to talk.

Shelly

 

[pscheffel]

Thank you Shelly for your kind words and I am sorry to hear of your husband. Some days are great, some are so-so, and some are bad. I guess that is the way the disease is. My prayers are with you as well.

 

[jessielf]

Hi I'm sorry your mom has it too. My mom got diagnosed at the end of last Aug. She is only 53 and she has really progressed to the point I don't like her being home by herself can barely walk and talk. Swallowing is becoming more difficult for her. She started hospice last week. A week after she was diagnosed I found out I was pregnant w my 5th. I have a 2,4,6, and 8 yr old. Sounds like we have alot in common. Sorry you have to go through this too! My mom tells me she is going this year and just waiting for the baby to be born. I too take it day by day. Its such a hard disease to go through. I never thought she would ever get something like this! We are really close I'm going to hate to have to lose her to this. BIG HUGS!

Jessie

 

[Toto's Dorothy]

Just my 2 cents worth but from a pALS point of view, I'm wondering if your mom is distancing herself because she doesn't want to make it harder on your children. They are at an impressionable age and she may want them to remember their "Nana" before. Like I said, just my 2 cents.

 

[Toto's Dorothy]

Oh, and welcome P and J to the family no one wants to be a part of. I wished we could have met in another place and time. But just remember to ask questions, someone is always able to give you an answer.

 

[Poet Chistopher Robin]

That's what I have too my friend, I know there are no words of comfort that will help you and the family, but I do pray that the Angels administer to your each and every need.

 

[Katie C]

That kind of emotional distancing is very common with FTD. Please look at the ALS/FTD forum where you will find a LOT of information, and will be pointed to even more.

 

[pscheffel]

Thank you Katie!

 

[pscheffel]

Thank you to all of you and may God Bless You!

 

[MLOx]

I'm so sorry to hear about your mom, my prayers are with you. My mom has bulbar onset diagnosed couple years back. I've talked her about via ' writing ' of course she doesn't speak anymore. she went through the stages of "loss" in some ways with all of the losses that she experienced. And perhaps your mother is going through the stages of "loss". That Includes anger, denial, bargaining, depression and ultimately acceptance. It takes a while to get to acceptance, my mom was very social and talkative and loved a nice meal. And those are the things she lost first ---her ability to communicate and eat. I think it took a big part of her sense of self away. Once that was taken she had a long time to adjust to her
Life without these parts--- it's a challenging disease because just when you get used to one loss you have another to face. I hope for the best for you and your family.