It's a complete mystery how MSA came into Jacqueline Sherman's life and why it has been such a destructive force for the last few years. All she knows is how bad things have gotten and how grateful she is for the true friends in her life.
It all started with foot cramps that led to temporary paralysis of one of her legs.
She needs daily visits from a home care nurse's aide. She can't stand up and walk for more than a minute or two at a time. Her balance is way off. Her blood pressure became so low that she would pass out. Her short-term memory is terrible. She has trouble speaking. She has seizures. Nothing makes sense.
"This just goes back for so long. And there were so many things," she admitted. "Everything's so out of sync."
MSA-P is multiple system atrophy, a rare neurodegenerative disorder that can cause a multitude of symptoms that can have wide-ranging and damaging effects on balance, mobility and co-ordination, sleep, blood pressure and more. There are no established genetic or environmental factors that cause the disease, explains the MSA Coalition on its website.
It's also very similar in many respects to amyotrophic lateral sclerosis (AKA Lou Gehrig's Disease) and Parkinson's Disease, but it's also far different than them. She's also far younger than most who are diagnosed with MSA. The average age of onset is in the early 50s.
Sherman is now 38, but when her symptoms started, the former nurse's aide was 35.
"I remember it was Christmastime and we were out Christmas shopping. I would start walking to the point where ... I'd run into someone, like trying to walk straight but walking sideways. I started just having a hard time walking at all. I was holding on to things, and it was just a really odd experience but it kept getting worse and worse. And all this happened really quite quickly," she recalled, describing her rapid decline.
"It was literally one thing after another and then came the tests. There was a lot of tests: PET scans and MRIs and CTs, you name it."
She now spends most of her days in a hospital bed that has been installed in the basement of the house where she and her husband and their children live.
"Over the last year, we have seen the most dramatic change in her symptoms and the effect of the disease on her body," said her husband, Erik. "There's remarkably little that can be done ... other than just kind of treatment, or treating the effects."
Jacqueline is a very giving person and definitely not accustomed to receiving help easily or frequently, said friend Lauren Wilde of Rose and Onyx Hair Company.
"Jackie is one of the most generous people I've ever known. She's been putting all of her energy into fundraising for various different reasons, whether it's the Relay for Life, or she's helping a single mother get a car so that her son can be brought to his doctor's appointments – she's consistently always putting her energy outward, even from her bed. She doesn't have mobility and, from her bed, she is still striving to help somebody somewhere," she offered.
"I have never met someone ... who is so just inclined to give before she asks. Every time. It doesn't really matter what it is. She doesn't view anything as a high enough priority for her that she will deliberately go out and try and seek it. She's not materialistic in any way. I don't know how to say it any other way then she's just literally one of the most selfless people I've ever met," Erik said, fighting his emotions.
Wilde has been helping to fundraise toward a goal of $30,000 to help the Shermans make some much-needed accessibility renovations to make Jacqueline's life easier.
"When I approached her with this idea, she was hesitant to accept it. She told me that there are better causes out there for this and that I should be fundraising for someone else. I just felt like it was my job; I had to step in and help this woman out."
Between cutting hair for donations, an auction and a GoFundMe page, approximately $10,000 has already been brought in to help them make those renovations including a chairlift and a ramp to the entrance of the house. There's still a bottle drive going on and donations can be dropped off at Wilde's hair salon located at 2 Taché Mews or you can visit the Facebook event to make arrangements before November 21.
For now, the Sherman family is overwhelmed with the support for which they are very grateful.
"I think it's amazing. I really do. I genuinely think it's amazing. There's a lot of times that I said to myself, 'There's just there's so many people in need in this world, and it's tough to figure out who to help and when, because you could be helping people all the time," Erik said.
"It's going to be a huge help because there's all the costs of even modifying a home," he continued, talking about the rising costs of medical aids and more. "It's really nice that that these kinds of things have cropped up and happened around us because it's heartwarming. It gives opportunity to Jackie that she probably wouldn't otherwise have."
