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Bubular ALS diagnosis
This is an incredibly heartbreaking story.. Tina is an older sister to me. She moved to California 35 plus years ago and married the husband she is still with. About 20 years ago, he had a stroke and has been fully disabled since. And she takes full care of him. She recently retired from her full-time job as a cashier, and was able to finally move back to Montana which has been her dream. She had a tiny house built right next to her best friend and her husband near polson Montana. That was about a year and a half ago! Recently she had to buy a new vehicle. One that could easily transport her husband and to be a little treat for herself. I'm the only family she has left here, and her and I were making plans to finally be able to travel and just have fun and see some of the United States. She is one of the most positive people I have ever met! And she has been so excited to someday go skiing again, on road trips, concerts.. all the things she's never done because she is a caregiver. Because they had to buy a new vehicle, she had to go back to work part-time as a cashier. I honestly don't know where she gets her energy and always smiling and making food on top of it! Her favorite things in the world to do is nibble on good food in the kitchen and talk! If you can't park in person, she'll pick up the phone and she could talk all day. It's one of her most delightful qualities! She's never judgmental and she never gives up on someone she loves. She has been my only source of positive comforting love in the last couple of years since losing my partner to cancer. And our mom and dad have passed.
I haven't had a place of my own to have company. But in November of last year I got a little cottage on the lake.. and it's her very favorite place to be! But she can only come for about an hour at a time as she has to be home to take care of her husband. You can get paid to take care of a family member but not if you're married to them. 2 months ago, I was feeling so down, and around the corner pops Tina! She took me to lunch. And I told her I was afraid to let her in, she is the last tie to my mother and Grandma and I'm afraid of losing her. She reassured me that her and I are going to be here at least 20 more years and we have traveling to do!
Then about a month and a half ago out of the blue, it seemed like she had a small stroke. She started to lose her voice and the muscles in her face felt weak. The stroke was ruled out. And then the testing started to find out what it could be. At this point we will hoping for a small brain tumor. A couple of weeks ago, the scana came back and the doctor believed she had bulbular ALS. WTF? We know nothing about this disease. Until now. It's not good. It's not good at all! So recently she was sent down to salt lake City to see a specialist and hopefully be able to be a part of some clinical trials. Which will not cure anything but will buy her some time. Her appointment was on Monday and by Wednesday we found out it was for sure Bubular ALS and that she does not qualify for any clinical trials. She is now saying goodbye to her three boys and her grandchildren.
And her story will become very painful and scary from here on out. It already has been! My heart is broken. And I want us to pull together as a community of people and maybe be able to pay off her car or rent for them. She will put her husband into a home and she will most likely have to go into a hospital setting very shortly. I just want her to be able to live with a little less stress because she has done so much for everyone else. I wish we could send her on a vacation or a trip but there's not time. Please donate anything you can and send this to anybody that you know that could donate even $5 or $10 because all together we could make a huge difference!
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