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Bangor woman battling ALS shares her journey with others

Tammy Michaels has a positive outlook on life that has remained constant over the months.
A Bangor woman with ALS provides an update on her journey.
A Bangor woman with ALS provides an update on her journey.(WABI)
Published: Dec. 30, 2020 at 7:39 PM EST
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BANGOR, Maine (WABI) - We began following a Bangor woman who’s battling ALS last summer.

Tammy Michaels has a positive outlook on life that has remained constant over the months.

We continue to follow her journey to inform the community on her disease and the challenges that come with it.

”It keeps me busy. I love it.”

Tammy Michaels is talking about her Facebook page - Tamarai’s Adventures. She started it several years ago when she had bariatric surgery as a way to share her experience with others. Now, it’s a tell-all about a disease she did not see coming - ALS. We first shared Tammy’s story in June and her bright outlook dealing with the challenges ALS brings.

“Positivity is the most important thing that gets me through my day. Do I have bad days? Absolutely. I try to tackle each negative with a smile or a laugh,” she says.

Also referred to as Lou Gehrig’s disease, ALS takes over the nervous system and attacks and weakens muscles. For more than a year now, Michaels has been using a wheelchair, something she’s grateful for, but the lack of accessibility in the community was a harsh reality.. Sharing her story is important to her. She answers her followers’ questions on what she calls “I wonder Wednesdays” and keeps them updated on where her ALS journey is taking her.

“I got my eye gaze, and I have my synthetic voice now, too.”

Like her latest equipment to help her through her day - an eye gaze device that’s been calibrated to her eyesight and allows her to scroll through things just by looking at them.

“This bar on the bottom right here is the camera that matches up to what I can see.”

She has a wrist feature that helps her, too.

“I can control it a little bit more with just like a mouse click, so just a little twitch. I can check my email. I can take a selfie with it. I feel very blessed to have this equipment.”

For months prior to her synthetic voice machine, she pre-recorded different words and phrases so she will be able to talk to loved ones once she’s no longer physically capable. Looking back on this year for Michaels, it’s been one filled with a lot of “firsts” and with some things she’ll be doing for the last time, like her last steps surrounded by family and friends while raising money for ALS, and her last time working as a wedding photographer.

“They booked me like a year before I found out I was diagnosed, like that summer. When I got my diagnosis, she said, no we’re not cancelling. It was very intimate. It was awesome. It was a super blessing, but I was very exhausted at the end.”

A few months back, Michaels had surgery for a feeding tube and a catheter.

“Since my surgery, my progression has sped up quite a bit which led to a discussion last week if I wanted to live or not.”

A decision Michaels had to make on her own with her family’s full support.

“Basically, what we are looking at is from six months to a year from now, I could be completely immobile.”

We’ll hear more on her decision Thursday including overcoming a medical situation that led to her being hospitalized, her husband’s experience with COVID-19,

and another gift from a stranger - a song written and performed for her.

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