A little sceptical about the ALS Ice Bucket Challenge? It's normal to have questions and I had a ton for Stefanie Lee of ALS Society of BC as well. Stefanie was so kind and gave me a beautiful Blue Corn Flower pin, the international flower of hope for ALS. The Blue Corn Flower's able to stand up all the elements of nature, symbolizing the strength of the people living with ALS, having to cope with the changes to their muscles and life.
Thank you James Ra for nominating me in the ALS Ice Bucket Challenge and let this be my small part in supporting the cause and spreading awareness.
1. What is ALS?
“ALS is not a disease that affects one person, it’s so big in what it affects individually, that it’s a disease to the friends and family around them as well.”
Stefanie: Lou Gehrig disease or Amyotrophic Lateral Sclerosis (ALS) is a neuromuscular disease that attacks the muscles, where the muscles eventually atrophy and die - causing you to lose control of your muscles.
It could be in your vocal cords, speaking abilities or your arms. People discover it in different ways, and there are no sure-fire signs to tell what the reason is.
It's a very difficult disease. A lot of people are living with it globally. In BC, we have over 300 patients, which is quite a bit for a province in Canada - one of the largest. However, we are able to take care of all the affected people in different ways. We either provide support so they don't have to go to a care facility or hospital so that we could keep them at home as much as possible.
ALS is not a disease that affects one person, it's so big in what it affects individually, that it's a disease to the friends and family around them as well. There's so much that the caregivers and family have to do for them. It's bigger than what I initially thought it would be.
2. Who can be affected by ALS?
ALS is one of the most tragic of the diseases.
ALS actually hits most people, on average, at the prime of their life when they're 20-30 years old. It's scary as that's the age when you just graduated from highschool or college or maybe starting your career and all of a sudden you can't lift up that basketball that you trained so hard to use, you can't lift up that pen for the job that you studied to do. There are no signs, no cause or cure. It's unknown if it's genetic. Sometimes a whole family could be affected and other times, it could happen once and never again.
Once diagnosed, the person will have between 3-5 years to live but again, it's very individual as we have no idea what causes it and how it progresses. A patient could be diagnosed with 5 years to live, but they could also outlive it. There's one patient, the longest living survivor in BC , she's been living with it for 26 years. She actually had a very traumatic pregnancy and birth and who knows if it was triggered or not but immediately after giving birth, she developed ALS and it progressed so quickly that she was never able to hold her own child. Her child is now 26-years old and has never heard her mother speak, because for this specific case it happened that it affected the mother's vocal cords.
3. How does ALS Society of BC support patients like her?
She's breathing through a ventilator and she can speak through a computer system, and our organization helps to provide those patient services to the patients who wouldn't normally be able to afford it themselves. On average for a patient, the medical technology that a patient would need on average costs about $137,000 plus the nurses and the doctors is ten times that amount usually. So there's this huge medical bill that the family and friends are left paying, after seeing all these terrible things happen to their friends or family that are really close to them.
It's really hard because you never know when it's going to strike, if at all, or if it will progress. It's per case that it is always different. I think that's why it's so difficult to find the cure because they don't know where to look first. It could affect your whole body at once, and we don't know if it's triggered by anything.
4. Other than medical technology, what other ways does the ALS Society of BC help to support the patients?
With our society specifically, we have a Patient Services Director. She looks after pairing up and supporting the patient with nurses and therapists. Also, supporting the caregivers, who are the hands and feet for the patient. Even if they're able to move on their own, the caregivers are doing so much for them.
We're having Caregiver's Day soon, which is acknowledging and giving a space for the caregivers to speak and to share how they feel and what they're going through. It's a difficult time for them because as a caregiver, you're always going to feel joy but you're also going to feel a lot of pain.
There are also equipment loans because of the high costs involved. Sometimes the ALS progresses really quickly, a patient would have to go through one wheelchair to another that get higher and higher in technology. For example, some wheelchairs will be able to, by an eye flicker, be able to speak, so that they are still able to have a voice, be able to write a book, write an email. So electronically, you'll never be able to tell that this person has ALS because that equipment helps to support them.
At my department, we initiate volunteers so we recruit and manage volunteers, who are really the life and blood of the society. They're the ones promoting the ALS walks, fundraising events, and many of them are actually holding their own fundraising events.
The ALS Centre provides more of the hospitalized clinic therapies. This is where a patient can find the equipment, book appointments, talk to a therapist, or go for physical therapy.
5. Where do the donations from the fundraising events and ALS Ice Bucket Challenge go to?
40% of all donations provided to the ALS Society of BC goes directly to Canadian ALS research. Within Canada, it's all funnelled into one pot. The other 60% stay within the province, if donated to ALS BC, to provide patient services, caregivers,and equipment loans.
Our Annual Report and Financial Statements are made public on our website for more details.
6. How has the ALS Ice Bucket Challenge help to raise awareness?
The ALS Ice Bucket Challenge has brought so much more awareness. Beyond that, it has brought a feeling of inclusion. Especially in BC, our province is so vast and large that a lot of the patients that we treat and provide support to live in really rural towns where nobody else in their town have any idea of what ALS is and they are just known as the person in the wheelchair. Whereas now, even in rural areas, they feel the support worldwide. Seeing all the support globally, makes each patient less alone and also to their caregivers.
Also, to be able to come together as a global community - Ice Bucketers - we're assimilating information to where social media can get it to, where it couldn't before. This would've been unheard of before Facebook, Twitter and Instagram.
The Ice Bucket Challenge has also encouraged a lot of people to want to become a volunteer. We're getting more calls everyday because a lot of people want to donate their time to the cause.
7. How do we sign up to become a volunteer?
You can fill out a volunteer application on our website, submit it, and it will go directly to me. Or to get a better idea of the past and upcoming events that we sponsor and lead, you can go on to our events page. For anyone interested in holding their own fundraising event, they can get more information on our 3rd Party Fundraising Events page, contact us and we can provide donation envelopes, blue corn flowers and donation boxes.
8. The Ice Bucket Challenge has raised some eyebrows and questions. What do you think about the criticism?
Because this was a grass-roots movement, started by a former athlete with ALS (Pete Frates), this isn't a marketing ploy - we were taken off our course of everything planned once this hit. I think the one thing that keeps me going and staying positive is what one of our patients had told us. He thinks of the Ice Bucket Challenge as how someone who is told they are diagnosed with ALS feels - they are hit with this cold, hard thing to swallow but there's no stopping it. It just comes over you and you have to live with it.
Another story I was reading, written by a son to his dad who has passed away to ALS, talked about how special the challenge was to him and how social media has changed the impact and the reach that ALS education can make. ALS patients lose less and less of their abilities to fend and do things for themselves. If we were to dump ice on ourselves and just sit in that until we froze cold, that is how an ALS patient feels.
If it is a ridiculous thing, then that's fine, we should be able to laugh at ourselves sometimes. It's also about bringing joy to the people that live with ALS. It's a fun thing and the challenge is not meant to be political.
9. It's actually really nice to hear about the feedback that you are getting from the patients. So they are generally supportive about the challenge?
It is and we actually receive dozens of emails from our volunteers and patients sending us their ice bucket videos, which we post to our Facebook Page. This really illustrates how impactful it is.
10. Where do you think the Ice Bucket Challenge will go from here?
We have no idea where this will go. Maybe this is the last push that ALS research needed. Maybe this excess money is the last push that we need to find that last little bit of an answer for the cure. Or maybe this is what will push the last research project to the edge and we'll find a cure and we won't need another Ice Bucket Challenge.
But to be able to have this kind of response is amazing. The optimism gained this year for this specific disease that many knew nothing about, only means positive futures for future charities as well as other health organizations.
You never really know what would be the next thing in social media, it could very well be just another cat video, but until that happens people are really into this and it has inspired inspiration.
Thank you Stefanie for answering the questions that I had in my head for the past couple of weeks.
For those of you who want to participate in the challenge, here are some ways to help re-purpose your Ice Bucket Challenge water:
- Do the challenge in the tub and plug in your bathtub drain stopper. Use the water for a nice cold bath - perfect for a summer day!
- Do it outside on the lawn so that your grass is absorbing the water
- Use toilet water like Matt Damon did
- Do it in a kiddie pool, and collect the water to water your plants or use it as drinking water for your dog or dogs if you're Cesar Millan
There are many ways to show support. You can participate by doing the Ice Buck Challenge and / or donating, volunteering, or just spreading the word. This also goes for any other organization and charity that you would like to support.
Thank you for reading and congratulations for a job well done to all the Ice Bucketers!
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