A Windsor mom fights back against ALS diagnosis
Published in Our Windsor September 24, 2020, written by Devan Mighton
On top of being a busy mom, Anne Kamath is also a full-time junior programmer at Applied Systems in Windsor.
At 37, her main focuses are her eight-year-old son Jaxtyn, eating right, and staying healthy.
However, right now, her health is the problem.
At a Sept. 3 meeting with her neurologist in Windsor, Kamath was told that she has a presumed diagnosis of amyotrophic lateral sclerosis (ALS), otherwise known as Motor Neuron Disease or Lou Gehrig’s Disease.
“Everything started a couple years ago, noticing weakness on my left side,” explains Kamath. “I didn’t really think much of it. New mom, your health goes by the wayside, and you’re more focused on your child at that point. It wasn’t until I had a neighbour actually ask me if I had a stroke. I thought that’s weird, why would you think I had a stroke?”
Her neighbour informed her that she was dragging her leg while she was out on a walk a few nights before – and this sprung Kamath into action.
“From there, it was a whirlwind of tests and doctors and specialists,” she says. “Back in March, they had initially told me that they presumed my diagnosis was multiple sclerosis (MS). Once I heard that, that’s when I changed my health habits.”
She started eating vegan and working out in an attempt to prolong the slow burn of what was to come with MS. With MS, the immune system attacks the protective sheath of nerve fibres, causing communication breakdowns between the brain and various body parts.
“It wasn’t until Sept. 3, I had gotten a call from my neurologist here in Windsor and he asked me to come into the office,” says Kamath. “That’s when he informed me that they had reviewed my latest MRIs that I had with contrast and they are now changing that presumed diagnosis to ALS, which was, obviously, life-shattering news because I’m a mom, my son’s eight, I’m the sole breadwinner. I’ve always been so dedicated to being a mom that when you hear that, it’s as if everything stopped.”
ALS is a rare disorder where motor neurons break down and die, making it impossible for the brain to communicate with the muscles in the body. Upon diagnosis, the patient is generally expected to survive about five years. The ALS Society of Windsor-Essex reports that only 31 people are known to have ALS in the Windsor-Essex and Chatham-Kent regions. The vast majority of cases happen in people over the age of 50.
“With ALS, it’s fatal. With multiple sclerosis, you could go [a long time] without developing a new symptom – ALS, it’s the waiting game now. It’s what is going to go first?” says Kamath. “Right now, we’re going forward with ALS. It’s a wait-and-see game, that’s what the doctors tell me, to get an official diagnosis.”
That’s when she decided to create a GoFundMe to prepare for the rigorous battle ahead.
“It’s fight or flight. Out of the two choices, I always go to fight – that’s who I am.”
She started looking at an expensive out-of-town treatment, but, luckily, people were looking out for her.
“Word got back,” states Kamath. “After I posted my GoFundMe, the amazing people at the [ALS Society of Windsor-Essex] reached out to my neurologist in London … she called me and said, ‘I don’t want you to feel like maybe your privacy has been [violated,] but I’ve heard about the GoFundMe and I just, as your doctor, want to give you full information.’ She explained to me that this clinic has already been told to stop doing these procedures.”
Kamath says there is some hope with a potential new treatment in the coming months, but it is all a waiting game. However, she wants to bring the battle to ALS. She is keeping her GoFundMe going for eventual medical costs that will be coming.
“Right now, they tell me I have what they presume to be ALS,” she explains. “That’s my primary diagnosis right now – the path that we’re headed down. With early-onset, let’s fight now. I feel like my mission now is – I just want to spread positivity and I want people to see the good in other people and just share with their loved ones what they appreciate about them while they can – and spread the word about ALS and all these other diseases – neurodegenerative diseases. There are so [few] people that do have them but it is so devastating that we need people to understand.”
“I know that’s going to happen. I know I’m going to need some extra funds. When it does happen, it will be nice for it to be there and not have to stress about it – medical equipment, care, all that wonderful stuff.”