Real Science, Real Hope for ALS2
September 28, 2013 by kittynh
I am proud to call myself a skeptic when I read about the work of really great skeptic leaders such as Dr.Rachael Dunlop. Her work is helping us find out more about the horrible disease ALS, or Amyotrophic lateral sclerosis . Her work, involving the connection between exposure to blue-green algae and the disease gives us all hope for a possible future treatment, or at least recommendations for human exposure limits.
This touches home for many skeptics, as we recently lost a dear friend, Michael Strieb (known on the JREF forum as Nobby Nobs) to ALS recently. He touched everyone with his courage and determination to live a life of dignity and meaning despite having ALS. He attended TAM (The Amazing Meeting) and flew by himself. He insisted on cutting up his own food (he was the last at the table, but it was wonderful as it just meant more time for those of us sitting with him to enjoy his company). He lost his ability to speak clearly early on, but he wrote notes and thanks to the wonderful skeptic community donating, he shared his thoughts and feelings via his computer that he controlled with his eyes.
He was thrilled to pass the 5 year mark from his diagnosis, and spent his last years in a full time care facility. He was not forgotten by his skeptic friends, he was delighted one year to receive hundreds of post cards from skeptics attending TAM. He noted his nurses were also delighted and had fun reading the cards to him. Other skeptics made books, or send lessons and videos and songs. I was never more proud of the skeptic community than through Michael’s illness where so many atheists and agnostics all never forgot he was one of us.
Now I’m thrilled that Dr.Rachael Dunlop’s work may help one day with a cure, treatment or in prevention of this disease that took Michael away from his young family and his friends far too soon.
I first read about a possible connection between the toxin in the blue green algae and ALS when I was up at Dartmouth Hitchcock Medical Center. My first feeling was one of “well that’s probably just some odd statistics. It doesn’t seem that much of a connection.” However, I do have a cabin home on a lake in New Hampshire, and I spend hours enjoying the antics of young people jumping off the rock in front of the cabin. They jump, and often the water shoots right up their noses and they come up sputtering. My own daughter knows to hold her nose! Holding your breath isn’t enough.
While Franklin Pierce Lake is considered a “clean” lake, as it is drained every winter as part of flood control, I have seen plenty of blue-green algae over the years. Also lakes are frequently closed in the state when it is felt that levels are too high. Still, no one really enforces the closures. While the public beaches may have “no swimming” signs people ignore them on a hot day. Boats still launch and people launch themselves off the boats into the cool water. Swimming, and jumping from the high rock, never stops.
I considered telling my one neighbor with a young son, who almost every weekend jumps off the rock over and over again with his friends, that perhaps a nose clip and eye protection might be a good plan, but right now there isn’t enough evidence. I would have to really convince the family, and so I hope soon there will be guidelines. Meanwhile, if a lake is closed, it’s a good plan to not swim there. At the very least, simple precautions can soon be suggested and I look forward to making sure the word gets out at least on our lake. A sign on the island where the jumping rock is, maybe it could save a life? Or perhaps science will find that the simple pleasures of jumping off a rock is still fine.
Also, it should be noted no one is saying this is THE cause of ALS. Or that everyone exposed will get ALS. Diseases are complex, but this could be one more key in ending a disease that is especially cruel.
- Australian scientists find out new link between blue-green algae, fatal MND (english.cntv.cn)
- Link between algae and MND (sciencealert.com.au)
- Waterfowl Hunters Cautioned About Blue-Green Algae (wibw.com)
- Two Alberta lakes plagued with blue-green algae (calgaryherald.com)
My wife knew Michael Strieb (Nobby Nobbs) in high school, and has kept in touch with him and with his family. On Sunday (October 6th) we went to see him.
The last time Michael was able to use the computer with his eyes on a regular basis was late August. It’s now extremely slow for him to move his eyes and blinking is difficult.
On Sunday he asked me to give his thanks to everyone at the JREF Forums. I’m waiting now for my account to be approved by a moderator. (I neglected to sign up until today, Tuesday the 8th)
This morning, we heard from his wife that he wants to be taken off the respirator; that was scheduled to happen half an hour ago. From then, it could be a matter of hours or possibly even days.
I just got word that Michael died this morning after being taken off the respirator.