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Active member
Dec 9, 2011
Loved one DX
Good morning,

I am new to the ALS Forum. We are in the KC area and are being treated at the KU Med Center - ALS Clinic. We are initiating hospice care this afternoon. Here is a little about our story:

My Mom was diagnosed with ALS in March 2011. Her FVC was 77%. Her next appointment was in June and FVC was down to a 67%. October her FVC was 46% and 4 days ago she was down to 34%. Her prognosis and time is grim.

She has been taking the Rilutek and many vitamin supplements since March along with small doses of adavan (sp?) and lexapro. We started morphine for air hunger this week. She had a feeding tube placed in June and is now using it for 5 feedings a day and barely maintaining 115 pounds. (A healthy weight for her is around 145).

Mom gets around in her power chair however can only stand to transfer to bed, chair, and bathroom. Her diaphragm is the most affected but she also has symptoms in her hands, feet, arms, legs, neck, speech, and bulbar region(throat/mouth). She has been on bi-pap since March and is up to 15-18 hours per day.

We are meeting with North Care Hospice today and welcome their assistance and expertise as they have an ALS program and care team.

I look forward to using the ALS forum as a resource and a place to share our story. My Mom is amazing and used to be Super Woman! This disease has robbed her and her new husband as well as her children and grandchildren of time.
I'm so sorry you have cause to be here. You're doing everything you can to make your Mom comfortable. I admire your strength very much. Sending warm thoughts your way. Stay close.
Welcome to the forum, lovedbygoldens. I am so sorry for your mom's diagnosis. This is an unfortunate and a miserable place for anyone to have to be, but you will find help with your questions and shoulders to cry on. Hang in there!
So sorry you needed to be here but you'll find a great deal of loving support.
How wonderful that your Hospice has an ALS Team! This is the first I've heard of that.
Welcome but sorry you have to be here. Hope we can help.

Hello lovedbygoldens. Thanks for sharing. Hope we can be of support.
lovedbygoldens, sorry to hear about your Mom's diagnosis...welcome to our forum. This place is a lifeline to me.
Welcome to the best forum for sharing your journey. Hope you can find some strength here with the great people that are always willing to listen. So sorry for your mothers ALS.
Thank you for the warm welcome. We kicked off hospice this weekend and feel much better about the care and support they will be able to provide. My mom's husband is struggling with acceptance and I think the confirmation that he is doing a great job caring for her will go a long way. She will meet her nurse tomorrow or Tuesday and be flooded with visitors (massage therapist, social worker, chaplin, PT, etc) over the next couple of weeks. Our first goals are trying to get eating and medication on good schedules that allow her to get enough rest as well.

Take care and have a blessed week!
Dear Lovedbygoldens: So moving to read your post; your love and admiration for your mom shines through brilliantly and
is so touching. Love is truly the most important thing....sending you lots of love, Jayne
Welcome to the family. No one wanted to be here but here we are to help each other in the goodtimes as well as the bad. You sound like a wonderful caring and loving daughter, how special your mom must feel. Hang in there, we are all here for you to laugh with, rant and rave or cry with. Thank you for sharing your story with use.

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