• Mike has lived with ALS for more than 6.5 years since his diagnosis, which is a milestone fewer than 20% of ALS patients see.  We are happy that he is such a stubborn guy!

• Mike's mantra is "I get up and I show up every day". And he does. We have a very defined schedule of care and he keeps to it every day, even if he'd rather just stay in his pyjamas.

• Mike is fully dependent on others for his care 24 hours a day. We have a dedicated team of caregivers who lighten our load every day.

• We try to keep him as comfortable as we can. Managing secretions is an important part of late-stage ALS, and Mike now uses a Cough Assist machine, and a home suction machine so that we can keep his airway clear. He gets ultrasound-guided Botox injections every few months to manage saliva production.

• Mike is prone to pressure sores and has been dealing with several of them along his spine and tailbone.

• He can no longer speak or vocalize at all and uses nonverbal communication along with his eye-gaze computer which tracks his eye movements.

• Mike can no longer ingest food or drink orally. He finally gave up his morning cup of coffee a few months ago, after fighting for that cuppa joe for as long as he possibly could.  

• Mike continues to use a non-invasive ventilator known as a Bipap machine to assist his breathing muscles at night.  He can still breathe independently, without the bipap, and does so in the daytime.

We had a very busy social calendar last year and this spring. Highlights include Jonathan's Graduation from Software Engineering; Mike's 60th birthday celebration; seeing the productions "Hamilton", "Harry Potter" and a live magic show,  and a Jays game with visiting family; and The Cels' Most Excellent Rail Adventure to attend our niece's wedding in Manitoba! Mike got into the swimming pool as much as possible, and it was a fulfilling year.

• Addressed a team of people who provide critical support bymanaging the essential equipment programs for people who use such devices (like the eye-gaze computer)

• Participated in a Webinar to share our perspective on why to continue medication for chronic illnesses, even if it feels no different.  (See below)

• Addressed Major Donors at an intimate Thank you Event for ALS Canada (See below)

• Spoke to the dedicated people at MT Pharma, sharing the impact of their important work from a patient perspective.

• Were interviewed for sponsored articles at Reader's Digest and ALS Pathways (See below)

• Were interviewed by CBC White Coat Black Art on the topic of Power of Attorney (See below)

• Spoke at a webinar for newly diagnosed ALS families, sponsored by another committed team at Amylyx Pharma, in partnership with ALS Society of BC (See below)

• Lent our voices to the ALS Day of Action at Queen's Park, requesting key funding for ALS Clinics and the equipment pool in Ontario. (See below)

• We continue to contribute to the Advocacy Committee of ALS Canada by offering insights, experience, and ideas.  

• Provide support and share lived experience with the ALS community and newly diagnosed families.

• Walked in the virtual Walk to End ALS, and with your help, became our region’s top fundraiser 2020.

• Traveled to Ottawa for ALS Advocacy Day on Parliament Hill.

• Joined the ALS Plane Pull in late 2019

• Were videotaped for an ALS information/resource website so that newly diagnosed families have a resource to lean on.  Cynthia was our producer/director/videographer and editor.  

• Were quoted in ALS Canada’s Annual Report 

• Videotaped Thank You and Advocacy Message for ALS Canada Research Forum 

• Told Mike's story in a Direct Mail fundraising campaign

• Lent our support to Major League Baseball's inaugural Lou Gehrig Day via Blog and were cutout fans at the Blue Jays game that day.  

• Continued to participate in support groups to learn from others and share our experiences with new families facing this diagnosis.

• Contributed to the successful petitioning of the federal government to improve timely access to therapies for ALS – with your help.

• Graduated from the Clinical Research Learning Institute as ALS Research Ambassadors

• Helped to shape and launch ALS Canada's Learning Institute

• Joined Focus Groups to shape ALS Canada position paper on access to therapies

• Mike remains as independent as possible and in full charge of directing his own care.  His power chair has recently been modified to allow him to drive it using head movement. This is a proximity sensor set up on his head rest.

• Mike has become quite proficient with his Eye-gaze technology, which offers hands-free text-to-speech and texting capability, and the ability to navigate his computer and the web.  This technology allows him to communicate effectively.

• Mike’s ability to swallow is deteriorating and he had a feeding tube inserted last year.  He does still eat and drink orally, with assistance, and the tube is there for him when/if it becomes necessary. 

• Our hope for continued bucket list travel was grounded by COVID – our trip to Ottawa was the last time we were on a flight, or very far from home at all.  Even with vaccines, future travel for us will look very different, as more care needs require more equipment and support.

• The pandemic made Mike’s care more difficult since all appointments were now virtual.  And when Mike’s Personal Support Workers refused to return to us after we tested positive for COVID, an ongoing struggle to find in-home support began.  He does currently have a fairly stable team who provide a total of 7 hours of care per day.

• Yes, you read it correctly - we were all positive for COVID over Christmas– the whole family!  And all are fully recovered.  Mike and I have received our first doses of vaccine.

• We have met and lost new friends and fellow members of this community to this devastating disease.  We will be participating in this year’s Walk to End ALS to honour them.