“Life is short, eat dessert first,” reads the framed verse sitting on the window sill of Angie Parker-Brown’s kitchen.
Angie is sitting beside the kitchen counter in her rollater walker when a visitor stops by for a chat. She offers a friendly hello and flashes her typical bright smile, along with an apology for being preoccupied with two earlier visitors – occupational therapy workers from the Nova Scotia Health Authority. They are just completing the process of measuring Angie for a wheelchair and going over paperwork for other modifications required to her home, such as widening doors and making her bathroom wheelchair accessible.
Last June, Angie was diagnosed with ALS, also known as Lou Gehrig's Disease, a progressive, fatal neuromuscular disease that progressively reduces a person’s mobility and ability to walk, speak, swallow and even breathe.
The wheelchair isn’t an absolute necessity just yet but it will become so far too soon.
Life is short, eat dessert first.
“I have two little girls and I have to be around as long as I can for them. I believe that being positive about it is only going to make it better,” she says. “If I let it really get to me, what’s the sense moping and crying when I could be out enjoying, doing stuff, right?”
Angie is a single mom with nine-year-old twin daughters, Paris and Parker. Her doctors say, so far, her disease has been progressing relatively slowly, which helps buoy her spirits.
Nonetheless, she has little movement left in her right foot, for which she now requires a brace, and her leg is progressively becoming less useful. A lot of muscle tone has already been lost in that leg from lack of use and her thigh is visibly smaller than her other leg.
“I can put my weight on it if my knee is locked but if my knee buckles, then I fall right down.”
Angie is starting to feel the disease creeping into her left leg and she is developing a heavy tightness in her right shoulder, further indication of the ongoing deterioration in her body.
After taking a few months off from her administration job with Nova Scotia Supreme Court following her official diagnosis last year, Angie returned to half-day duty because anything more than that is too physically draining. Still, she counts herself lucky in that the disease hasn’t been progressing any faster.
“I do worry and I have my days. But I try not to let the bad days outnumber the good days and I just try to focus on what I can do right now,” she says.
Although her mobile walker helps Angie get around inside her house and when she is outside or at work, she requires help getting in and out of the house because of the steps up to her kitchen. That role is being primarily filled by her mother, Carol Parker, who carries the walker in and out of the house and drives her to and from work every day.
A fundraising effort by family and friends has enabled Angie to purchase an adjustable bed and plans are in the works to construct a deck and wheelchair ramp at the front of her house.
“Once that’s done I won’t be using the stairs anymore,” she says. “I can’t wait. Even to just sit out front in the fresh air will be great.”
Eventually, however, Angie knows she will require a wheelchair-accessible van in order to maintain a degree of independence for herself and her daughters.
To that end, a Gofundme page has been established with a goal of raising $75,000 for a van and whatever other alterations may be required in her home. At some point there is also the likelihood of nursing home costs.
“I’m really lucky to have the support that I do,” she says. “Now that I’ve told everyone, the support has been overwhelming. That helps me keep positive knowing that there’s people I can depend on.”
Eventually, she would also like to have a motorized wheelchair to make it easier to plan outings with her daughters.
“It would be nice to have the power chair for a little more independence as far as going to the mall or going outside with them and not having them have to push me,” she says. “I don’t want to be in a wheelchair right now full time because I don’t have to be.”
But she is certainly preparing herself for that eventuality.
“If I’m in a wheelchair for years I’m fine with that as long as I have my other capabilities,” she says.
Life is short, eat dessert first.
Anyone wanting to support Angie’s effort can do so by logging onto: https://www.gofundme.com/Angies-Battle-ALS .