I work in medical research and, up until very recently, my long-time gig was Motor Neuron Disease. More specifically, I worked in clinic with people who had been diagnosed with Amyotrophic Lateral Sclerosis (ALS). You may also know it as Lou Gehrig’s disease.
ALS can be hard to diagnose. The early signs of the disease appear to be various other things and it isn’t until all of these other illness are ruled out that doctors begin to think of ALS. I once had a patient who, because swallowing problems were his first symptom, was scared he had throat cancer. By the time the diagnosis of ALS had been made, he and his wife told me they wished it had been cancer.
People who have been diagnosed with ALS don’t know what to expect. Every person’s progression is different and even the experts don’t know what lies ahead for the individual and their family. This uncertainty is one of the hardest things about living with ALS. The general facts we do know are never reassuring.
ALS is a progressive and ultimately fatal neuromuscular disease, which has no known cause, cure or drug therapy of consequence. Individuals who are diagnosed with ALS do not typically survive beyond 3-5 years. This devastating disease slowly robs the individual of the ability to walk, talk, and ultimately, to breathe. – ALS Canada
People sometimes have a hard time understanding this, but I loved my work. I was there for someone if they needed to be angry and I was there if they wanted me by their side in hospital as they died. I was there if they needed me and every day was an honour.
May is ALS awareness month, so now that I’ve made you aware of all the terrible things about ALS, I want to tell you something about ALS that is wonderful.
I would like to take a few moments of your time to tell you about my friends Darrell and Deana. Unfortunately, as I have alluded to above, we met under terrible circumstances.
Darrell’s first symptoms of ALS were speech related and it wasn’t too long before he lost his ability to clearly communicate vocally. This would be tough for anyone, but it was especially hard on Darrell who was in sales and needed his voice to make a living
Darrell has an artist’s eye and had always played with photography as a hobby. When he suddenly found himself without work to fill his days, his amazing wife Deana was quick to push the camera into his hands and encourage him to get serious.
This is the photograph that is on my living room wall – Lunenburg Window
Darrell has an amazing sense of beauty and has focused his lens on the splendour that surrounds us here in Nova Scotia and Atlantic Canada.
This is his website so you can look at more of his work – Eastern Light
Darrell and Deana have been dealt a terrible hand but they are still at the table and in the game. In addition to his art, Darrell focuses a lot of energy on helping people who are living with ALS. He has started a support group that meets once a month and he has become one of the province’s strongest fundraisers in the Walk for ALS. He also donates a portion of all his photography sales to the ALS Society of Nova Scotia.
My world is a much prettier place with Darrell and Deana in it!
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I have just discovered this wonderful post and want to let you know that it has reached out to me. My husband, David, has recently been diagnosed with ALS (bulbar onset). We’re just beginning to navigate the system and we’re trying to orient ourselves for the journey in the absence of any local roadmap. Yarmouth County has few ALS cases. Our family doctor told us he had never cared for even ONE ALS patient and he’s been in practice for many years now. When we go to Halifax for neurologist consults, it’s a 7-hour round trip. This disease will try us to the limit, I suspect.
My daughter and I will be doing the Walk for ALS in June. Ironically, I am also a photographer; Darrell’s wonderful work speaks to my heart.
Thank you so much for this.
Brenda
Brenda, I’m so glad to meet you, but I’m very sorry to hear that your family has been hit with ALS. In Nova Scotia, we are very fortunate to have Dr. B and Dr. G as our ALS specialists. They are both so good at what they do. You are right, however, Halifax is a long way away for many of the people they treat. Have you reached out to Kim and Terri at ALS NS? They are fantastic at providing support and may be able to put you into contact with people nearby who know exactly what you are going through.
I wish you and David all of the best. If you to talk, please feel free to e-mail me.
Thank you! Sorry for my delayed reply; your comment ended up in my Social inbox through gmail. I was just speaking with Terri this morning; she is such a positive and helpful source of support. We’re learning much. A trip to the speech pathologist this past Monday resulted in a recommendation for a feeding tube in the near future. But we’re grateful for resources such as the ALS clinic, where David will ultimately be seen by his “team”. There are many factors to consider and decisions to be made.
Your encouragement means a great deal. I might well take you up on the offer of email discussion!
I have a blog here on WordPress too. I will probably post the odd reflection on this strange and unexpected, new journey.
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Great post, Stephanie. Darrell’s photos are beautiful. I live in Texas, but once worked in Nova Scotia and love it there. Is that where Darrell lives?
Thanks for comment! Yes, we are lucky to be living in beautiful Nova Scotia. You can read more about Darrell on his webpage here http://easternlight.ca/pages/843-about
Thanks for sharing this Stephanie, the more people who are aware of ALS the sooner we can find a cure.
Thanks for letting me share, Darrell. 🙂
Gorgeous photographs.
You should be very proud of the work you do. Having a person there to assist them through a difficult, tragic time makes all the difference.
They are gorgeous, aren’t they! That’s why I had to share.
I’m still working in research, just in a different medical area, and the best part of my job continues to be the people I meet. Each one changes me for the better. Being there for them is the least I can do.
An amazing story. Thanks for sharing. My father died of ALS, and photography is my passion.
The site i run encourages people who are experiencing mental health issues (and their family and friends) to pick up their camera, and share and support each other. If Darrell is a match, we would love to publish his work in our online gallery!! I will check out more of his work for sure. I am so moved.
I also had photos in a gallery show in NYC last year called ART for ALS that was a fundraiser for ALS research. I’m sure if they do another one they would love to share his work as well. He should feel free to contact me any time about this, Broken Light Collective, or anything else.
I’m very sorry to hear about your father. I am always amazed at the number of lives that have been touched by ALS.
I was just over looking at your site and there is some amazing work there! Kudos to you for providing the forum for these artists to come together. Singularly, the work is great, but as a collection it is breathtaking.
I’m so glad you found my post so that I could find your site!
Thanks for passing on the info for Darrell.