Lavender 4 Lives was inspired by Debbie Damario who has worked tirelessly to promote awareness of ALS after she lost her partner, Mark, in 2012.
ALS, also known as Lou Gehrig’s Disease, is a condition that affects many people around the world. ALS usually affects middle aged adults, and many people have little or no knowledge of the disease. ALS stands for amyotrophic lateral sclerosis. It is a progressive neurodegenerative disease which affects nerve cells in the brain and the spinal cord. The name of the disease, A-myo-trophic, is derived from the Greek language. "A" means no, "myo" refers to muscle, and "trophic" means nourishment – "No muscle nourishment." When a muscle has no nourishment, it atrophies or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening ("sclerosis") in the region. The cause for it is still unknown. It affects both men and women from the ages of 40-60 years old and they usually have it for 2-5 years.
Some of the early signs of ALS may include muscle stiffness, twitching or cramping, and weakness affecting a limb. When someone is suffering from ALS, their legs start to feel heavy, and they may trip because they can’t lift themselves up. In the later stages of the disease, fingers will be bent, a patient will have to walk with a cane or other device, and won’t be able to do the simplest things such as tying shoe laces. The final stages include the inability to speak, eat, move and breathe. It is a terrible disease for which there is currently no cure.
Someone very close to me was diagnosed with ALS and before he received this life changing news, he was just like you and me. He could eat steak, go to the gym, and appeared to be in perfect health. We started to notice that he was having trouble walking. He began to trip, and it was hard to understand some words when he spoke. He was a butcher and when he was at work, he noticed he was having trouble picking things up. The first couple of times, he thought he was just tired, so he let it go. When things didn’t improve, he made an appointment to see a doctor. What came next was devastating. He was referred to the ALS Hospital in London, Ontario for testing and that was when he received his diagnosis. If you live with someone who has ALS, not only does their life become more challenging, but so do the lives of everyone around them.
The caregiver plays an important role when
living with someone with ALS. My
mother and I shared these duties over a period
of 16 months. My mom worked a full
time job during the summer, so I chose to be
the caregiver while she was at work. Each
night, he slept with a breathing machine. In
the morning, I would have to remove the
mask from his face and then prepare his
breakfast and lunch. It was also important to
ensure he did not fall unexpectedly and I
helped him with everything he needed.
Sometimes we would watch TV together or maybe just sit and talk. He then lost this ability so he used an iPad to communicate with us. My mom and I couldn’t do the things we used to because someone always had to be home with him, to keep him company, but more importantly, to keep him safe.
This is the story of a man named Mark Doan. Mark was engaged to my mother. He was diagnosed with ALS at the age of 48. The disease took away Mark's ability to talk, walk, eat, dress himself, and breathe. He lived with this disease for 16 months. ALS took Mark's life on October 23rd, 2012 at the age of 49. Mark was one of the nicest men I have ever known and it was hard to watch a piece of him being taken away each day. I was deeply saddened by his death and I still miss him every day. Remember to treasure your loved ones each and every day. Rest in Peace, Mark.
Thank you for your support. You are helping to fund necessary research and are improving quality of life for people like Mark.
- Lauren Costantini
In memory of Mark, all those who have lost their lives to ALS and those living with ALS, Lavender 4 Lives is here to make a difference.
FOR THE CURE
What Can You Do?
Every year, in 8 provinces, people are walking to raise awareness
and money for ALS. Click on the link to find a walk near you!
Donations made directly to the ALS foundation are greatly
appreciated and will go towards supporting a family in need or
to fund research. Click on the link to make a donation now!
Debbie Damario (Lauren's Mother) & Mark Doan