My fight against ALS: a Bermudian woman's story
A brave mother-of-four has told of her battle with ALS to raise awareness of the condition and help others afflicted by similar illnesses.
Marilyn Dickinson was diagnosed with Amyotrophic lateral sclerosis, the progressive condition that affects mobility and speech, earlier this year.
Her courageous decision to tell her story comes as thousands across Bermuda have taken on the Ice Bucket Challenge to raise funds to fight ALS. And, it provides a very human insight into a condition very little is known about and for which there is currently no cure.
Mrs Dickinson, said: “I can honestly say I have a strong faith, and without God I don’t know how I would be doing.
“I would be crying a lot more. I am not afraid to die, I’m just not ready to die.
“The hardest thing is looking at my grandchildren and knowing I won’t be there to watch them grow up.
“I may not even get to know them. My children have been amazing through this whole thing. They have been so supportive.”
The physiotherapist, who continues to work from her offices on Point Finger Road, added: “I wanted to share my experience with other people who may not be going through this necessarily, but something traumatic and frightening.
“To see the way the Ice Bucket Challenge has taken off and that feeling of support was overwhelming.
“But it’s also important that people understand why they are doing it and what ALS is. The amount of money that has been raised is astounding.”
Mrs Dickinson met her Bermudian husband, John, while the pair was studying at the University of Toronto and they returned to Bermuda in 1976 to live.
They had four children, Jennifer, Laura, Robyn and Mike and are about to celebrate the birth of their fourth grandchild.
The 63-year-old first noticed signs of the condition last year when she felt crampings in her left leg. She said: “It was like the perfect storm.
“I had been going backwards and forwards to Boston at the beginning of 2013 because of trouble I had been having with my eyes.
“And then in March or April I started having a cramping in my left calf and foot; sometimes up to seven, eight times a night.
“But, I did not really think about it as I was so preoccupied with my eyes.
“After my eye surgery in mid-September, I began to notice that after I went walking I would walk with a limp on my left leg. There was no pain, just a limp.
“Then I started noticing that my speech was changing too, it got slower and more slurred. My family did not really notice it, but I did.
“When I finally decided to check out my foot and ankle, I realised there was quite a bit of weakness and I had started to limp more.
“By October the limping had got worse and I realised that I might have neurological problems, so I got referred by my doctor.
“My eldest daughter, Jen, and I did a lot of research on the internet.
“I kind of hung my hat on it being ALS before I had seen the specialist in Bermuda.
“He did all the tests and basically said ‘you’re right’.
“I cannot explain that moment. It was almost like you are walking in a fog. I went to the parking lot and I just lost it.”
Mrs Dickinson went to see a neuromuscular expert in Boston in mid-November 2013.
And after further tests and IVIG infusions at the beginning of 2014 it was confirmed she had ALS.
Mrs Dickinson told the Gazette: “I gradually accepted what it was. It was very hard, and it was hard for my family too.
“ALS is progressive and it has progressed with me. I am lucky it has not progressed as quickly as it could.
Generally speaking, you are looking at between three and five years.
“It’s mainly my left leg and my left arm that has been affected, although I am quite functional and still manage to work.
“Energy is a problem. I get tired quickly.
“But, I love my work. I am trying to do as much as I can and remain as normal as I can.
“It’s hard with my speech, especially on the phone and at the end of the day if I have talked a lot, my speech is not good.”
She added: “Eating and drinking can be difficult.
“I have to choose carefully what I eat and pills are really hard to take.
“I get a tickle in my throat and I can choke on my food or my drink.
“I take lots of supplements and they have really helped with my energy.
“I tried some medication, but there is no cure for ALS and the pills are only supposed to lengthen lifespan by a couple of months.
“I had a really bad reaction to them so I stopped taking them.”
Mrs Dickinson recently visited the ALS clinic in Massachusetts General Hospital in Boston.
She will continue to receive guidance and help to cope with ALS in the coming years.
She said: “I want to stay active and independent for as long as possible, but there will come a time when I am not able to get around as I would like.
“I cannot predict the future, so I don’t know when that will happen. But, they will give me the tools to help with that.”
*Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig's Disease”, is a progressive neurodegenerative isease that affects nerve cells in the brain and the spinal cord
*ALS is not contagious.
*It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.
*Approximately 5,600 people in the US are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
*Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more.
More than half of all patients live more than three years after diagnosis.
*About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years.
There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
*ALS occurs throughout the world.
*ALS can strike anyone.
*The onset of ALS is insidious with muscle weakness or stiffness as early symptoms.
Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
