ALS walk helping to raise awareness about disease
By Lethbridge Herald on September 6, 2024.
Lorie Jacobsen, this year’s ALS walk ambassador dumps iced water on Cheryl Ross, Administrative Assistant, while Lorie’s husband Lyle makes sure she is safe on the ladder, during an ice bucket challenge to raise awareness and funds for ALS this week at Buffalo Grace Manor.
Herald photo by Alejandra Pulido-GuzmanAlejandra Pulido-Guzman – LETHBRIDGE HERALD – apulido@lethbridgeherald.com
The Lethbridge Walk Together for ALS is coming back today to help raise awareness of the disease, raise funds for research and support those who are navigating their ALS journey.
This year’s ambassador is Lorie Jacobsen, a local resident who calls battling ALS her superpower, and who despite not being able to talk anymore, has been very vocal about raising awareness through other means.
Earlier this week Jacobsen spoke to the Herald with the help of an app on her phone, that allows her to type what she wants to say with the app talking for her through a computer-generated voice.
She said her journey began last summer when she started noticing changes in her speech and decided to see her family doctor about it. And after many tests done, in Feb. 4 she was diagnosed with Bulbar ALS.
“I can no longer talk and I have a feeding tube as I can’t close my mouth to keep my lips sealed. It is hard to swallow and can’t hold liquids in my mouth,” said Jacobsen.
She said because of her ALS she now bites her cheeks, lips and tongue and can no longer eat fresh fruit because of her inability to hold liquid in her mouth.
“I can sometimes eat very small pieces of food if I put them in the back and chew them, but it is hard for me to swallow, because of my tongue, so I mostly feed myself through my feeding tube,” said Jacobsen.
Shelley Thom, ALS walk organizer and surviving spouse of an ALS patient, explained the muscles deteriorate over time and this is why Jacobsen is having a hard time using her tongue to swallow.
“There is a protein enzyme that actually blocks the messaging from the brain to the muscles, like when you normally go to lift your foot to walk it’s automatic for us, our brain tells our feet to lift when we walk,” said Thom.
She said for her husband, his ALS started in his feet as well as his cheeks and throat and he started to slur his speech like Jacobsen.
Now Jacobsen finds herself looking for ways to raise awareness about ALS, while still being able to work full-time. On Saturday she will be leading the walk as her muscles in her legs and arms are still unaffected.
“The walk makes me feel special and I am so proud to be surrounded by all the great people in my life,” said Jacobsen.
Since not everyone is able to make it to the walk today due to mobility challenges or other restrictions, in her honour and her husband Lyle’s, his place of employment raised awareness and funds for ALS research through an ice bucket challenge.
Residents and staff at the Buffalo Grace Manor gathered on Thursday afternoon to show the Jacobsen’s their support while Lyle and Lorie dumped ice water on five brave volunteers.
When talking about the importance of raising funds and awareness for ALS research, Thom said it is very important to do both as ALS is a complicated disease that so far has no cure or medications that can help those battling the disease.
“There is no direct testing for it, everything is different for each person that has ALS, there is no rhyme or reason for the disease. That’s why is so challenging for a cure to be found, because every person is affected so differently in the way that goes through your body,” said Thom.
She said a lot people think ALS is the same as Multiple Sclerosis (MS) but it is so different, as MS patients have a variety of medications that allows them to live with the disease for many years, while there is no specific medication to help those with ALS yet.
“They continue to test. My husband did five research projects for it at the time and they are on hold right now. There is one that he did that was approved last year, and what this drug does is prolong the breathing for about three to six months,” said Thom.
She said eventually breathing is affected, but that specific medication helps patients breath a little longer than they would without it.
For Jacobsen, she said her breathing is not affected as of yet, but sometimes she coughs because of it.
The Lethbridge Walk Together for ALS will take place today at Henderson Lake Park – Horseshoe Pits with registration opening at 9 a.m. walk beginning at 10 a.m. and a barbecue to wrap up the walk at 11 a.m.
There is no registration fee – those walking are encouraged to wear purple and donations will be accepted on site.
For more information or to donate online visit https://alssocietyofalberta.akaraisin.com/ui/walktogetherforals2024/g/lethbridge
25-24
I am a CALS of my 68 year old Husband who suffered from muscle tiredness brought on by chronic fatigue in its early stages. Neurologists first had difficulty diagnosing it until multiple examinations indicated ALS, for which there was no known cure other than the prescription of riluzole medications, vitamins, and therapies. More advancements in breathing difficulties, difficulty pronouncing words, and difficulties eating occurred before we made the decision to try different medications, which significantly enhanced his condition. He received treatment for ALS/MND at vinehealthcentre. com from the U.S approximately four months ago; since then, he has stopped using a feeding tube, sleeps well, works out frequently, and has become very active. Although it doesn’t cure his ALS, it has improved his quality of life. .