Support Barb in her battle with ALS

UPDATE

As my ALS continues to progress I find myself with very little hand strength, no longer able to stand up from a seated position, and having difficulty breathing.

The good news is that in 2.5 weeks I begin my trial in Montreal!

My story

Hi, my name is Barb and I'm fundraising to offset the costs of my battle with ALS. This devastating disease is often referred to as the "bankruptcy disease". It not only ravages your body and your mind, but causes your family and caregivers to be burdened with the substantial costs of care and accessibility along the way. Your donation will enable my family to prioritize time together as we process my diagnosis and provide relief of the financial stress associated with accessing proper care.

MY STORY:

As a quick introduction, my family was a wonderful family of four with a collection of rescued animals. Eight years ago I lost my daughter to a rare form of brain cancer. As my family continues to grieve and heal, we now face another traumatic cycle: In May of 2023 I was diagnosed with ALS.

Amyotrophic lateral sclerosis (ALS), formerly known as Lou Gehrig's disease, is a neurological disorder that affects motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. As motor neurons degenerate and die, they stop sending messages to the muscles, which causes the muscles to weaken, start to twitch (fasciculations), and waste away (atrophy). Eventually, in people with ALS, the brain loses its ability to initiate and control voluntary movements such as walking, talking, chewing and other functions, as well as breathing. ALS is progressive, meaning the symptoms get worse over time.

Because of my physical decline I'm no longer able to continue working. I'm looking for financial help to offset costs. The average family spends $250,000 battling this terrible disease - leaving families emotionally and financially devastated.

My CURRENT MONTHLY EXPENSES include:

1) Drug costs - there are three medications available to try and slow the disease. My share of the costs exceed $5,000

2)Therapy : to keep the muscles from atrophying (weakening and shrinking): $1650/month

.......Physical therapy

.......Osteopath & Massage therapy

.......Mental, physical, & emotional support

3) There are approximately 3000 individuals at any time in Canada living with this disease. As some are diagnosed, others pass away. It is important that those of us living with the disease work with physicians to participate in trials to find a cure for ALS. Travel to various ALS centers to participate is not covered by anyone. I am looking to participate in a trial where the only Canadian location is in Montreal (I'm in western Ontario). This means I must travel weekly. The costs for me and a caregiver are $2,400/month.

In the FUTURE I will need help to offset the costs of:

1) A caregiver....someone to help me get dressed, eat, and conduct daily physical hygiene. Estimated costs for 10 hours a day: $15,750/month

2) Home alterations: Friends are building a ramp to my front door but I'll need to cover the costs of adapting my home so that I can get into the washroom and shower in a wheelchair, get to my medical appointments in a vehicle that accommodates a wheelchair, and perhaps even a stair lift so that I can reach my bedroom: Costs $55,000

If you have it in your heart to support me with this battle, I would greatly appreciate it!