Her beloved mom took ill with symptoms baffling the medical community right up to the time of her death.
Bev Smith, Prince George nurse, died at 76 years old from ALS in 2021.
To honour Smith's memory her daughter, Kristi Francis, has organized the Prince George Move to Cure ALS fundraiser, which takes place Sunday, June 23 at 10 a.m. at Lheidli T’enneh Memorial Park.
Francis said she felt it was important to share her family’s ALS journey with the community.
Smith’s symptoms started about a year and a half before her diagnosis and the first symptom was repeated choking incidents, Francis said about her mom’s illness.
“There was a handful of times where my Dad actually had to perform the Heimlich (manoeuvre) on her,” Francis said. “Along with the choking, Mom was losing strength. My mom was always very active and she became weaker and we all noticed her gait was changing, too. There was some changes in her voice as well. They were significant changes to us but not to the medical community.”
Smith went to the doctor many times.
“She didn’t feel she was being heard so I attended with her and shared that my siblings and I thought these symptoms were more neurological and I felt that went unheard and was dismissed,” Francis said. “We all felt this was something bigger.”
“My mom ended up having a serious choking incident at my house at a family dinner where we had to call 9-1-1,” Francis said. “It was quite devastating.”
Francis’ mom was admitted to hospital as a result and that’s when they started getting a little more support for her.
It was at that time Smith was misdiagnosed with Parkinson’s Disease.
“ALS is hard to diagnose,” Francis added.
Smith’s symptoms were worsening significantly and quickly.
Already a slim woman, Smith continued to lose weight as her ability to swallow became quite challenging, Francis added.
Smith connected with the Parkinson’s support group in town and when she got to see a Vancouver counsellor over Zoom the former nurse shared that she did not believe that Smith had Parkinson’s and suggested Smith see other specialists.
During that time Smith’s symptoms kept worsening until she could barely walk on her own.
“By that juncture I was spending most of my time at my parent’s house,” Francis said. “It was heartbreaking to see my Dad wrap my mom’s arms around his shoulders and he would help her to the kitchen table that way. I just remember trying to access help and it felt like we were banging our heads against a brick wall - pushing a boulder up a mountain - and finally the doctor did make the referral to the specialist in Vancouver based on our advocacy and then time was really running out.”
Mom, dad, brother-in-law and Francis flew to Vancouver for the appointments and the first appointment they had was at the Movement Disorder Clinic at UBC.
“The doctor there knew within minutes that my mom didn’t have Parkinson’s,” Francis explained. “It was ALS and the doctor wanted to get my mom to VGH (Vancouver General Hospital) right away where we would see the specialist.”
Smith knew about ALS because some of the patients she had cared for during her nursing career had it.
“And my mom said it was a horrible disease,” Francis said. "And she was right."
Once the family arrived at Vancouver General Hospital, Smith was admitted right way. That’s when the medical staff discovered that Smith had very little lung capacity and she was put on a BiPap machine to help push air into her lungs.
But it was all too little, too late.
“It was a very scary time and my other siblings flew to Vancouver to be with my mom,” Francis said.
“The plan originally was to be there just a few days to attend these appointments and we ended up there for more than two weeks.”
The official diagnosis came March 18, 2021.
“And my mom really wanted more time and because her disease had progressed so far the treatments for people with ALS to be more comfortable – she was just too far gone to get those treatments and basically ALS is considered a terminal disease and the doctors told us we had weeks to months. We were able to bring my mom home and we were home less than a week and she passed away March 31. It just seemed so quick. She wanted to be at home and we were all with her at the end."
Francis said she would like to thank everyone in the community who supported her mom and family during such a terrible time.
Being the volunteer coordinator for the local fundraiser is a way for Francis to give back and support others who are experiencing ALS.
The Move to Cure ALS Walk is the signature fundraising event for the ALS Society of British Columbia. The fun, family-friendly event sees people celebrate hope for a future without ALS, honour those who have been loved and lost and support those with the disease and their families.
There will be a walk along the river, some music at the band shell a barbecue and some people share their own stories.
All funds raised stay in B.C. and the Yukon to support people living with ALS, patient care and ALS research through PROJECT HOPE.
People can support the cause by participating in the event or donating until the end of June.
For more information visit www.WalkforALSPrinceGeorge
