It has taken me awhile to decide if I should do this or not. I wasn't sure how my mom would feel about it, it's VERY HARD for her to accept help.

My mother, Linda, has lived on the Vineyard her entire life . She has always been a giver and a helper, NOT one to ask for help, or need help. I think the hardest part of her diagnosis is that she's unable to do so many things and for someone that's ALWAYS been independent, that's very difficult.

My mom worked for The Sheriffs Department as a 911 Dispatcher for almost 30 years. So I'm sure there's MANY people that have spoken to her or been assisted by her if you ever had to call 911. She loved that job.

on March 22, 2024 my mom, Linda, was diagnosed with ALS. If anyone doesn't know ALS is a progressive and terminal disease. She had been suffering for over a year, not being very mobile and coordinated, and had 10 falls in about 9 months. I was working full time and living in VH when I decided I had to move back in to help her at least until we figured out what was going on. Very rapidly she started to decline with the mobility. She had been to her PCP, The ER, and no one seemed to know what was wrong. It was a "Mystery"

4 months after moving in with her and helping her, I decided she couldn't be alone all day while I was working and insurance does not cover caregiver expenses. I made the decision to leave my full time job and stay home and take care of her myself.

in that short 3 months, things have gotten much harder for her. So far the ALS is affecting her legs, mostly the left leg. She has no control of it because she can't feel it. So that makes many things difficult. Getting in and out of bed is impossible without my help. One she sits down she isn't able to get up on her own. She uses a walker and cane to get around in the house. When she does leave the house, she uses a wheelchair.

As her disease progresses, she will need MANY things that are t covered by insurance. Motorized wheel chair, tools to help her do the daily tasks that she's able to do. Her ALS treatment team is in Boston at Mass General, they're wonderful, and VERY helpful. But as I'm not working, and my mom is on a pension medical costs are adding up. Things come up that you don't even think of. Hiring someone to move a couch out of the house and take it to the dump, getting a ramp built for when she needs it. Co-Pays for medication, travel to and from Boston. Just so many things.

I completely understand times are tough for everyone. I'm just hoping that there's a way I can make this diagnosis of this horrible disease just a little easier for her.

She's always been there for me, and I intend to do the same.

Thank you...

UPDATE:

So since posting this originally a LOT has changed and progressed. On August 26 my mom had a fall that due to severe osteoporosis broke her leg in 3 places. They decided not to operate because of the osteoporosis, ALS, her in ability to walk, and her age. They said putting her through all of that just wasn't right. They put her in a plaster cast and she was home in a week. She just had it removed last week and has been in incredible pain ever since. Her disease has progressed to the point she is 100% bed ridden and since the leg injury hasn't been able to get into her wheel chair, that she waited so long to get. This breaks my heart! I'm her only care giver and am here with her 24/7 unless running errands for her. She's now on Hospice and they have been wonderful. She's on oxygen at night which seems to help with her breathing. I want to make the next two holidays coming up (Thanksgiving and Christmas) the most amazing for her with anything and everything she may need and want. I'm posting her mailing address because I would LOVE IT if people would send her a Christmas card. Anything to lift her spirits which at this point in time are very low. So PLEASE share and if you could, send her a Christmas card. I would love to see her smile ♥️

Linda Cook

PO Box 1884

Edgartown, Ma

02539