• Mike has lived with ALS for more than 7.5 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 schedule of care and he keeps to it every day, even if he'd rather just stay in his pyjamas.

• Mike still gets out of bed most days and spends a few hours sitting in his power wheelchair.  Otherwise he spends most of his day in his new hospital bed. He continues to receive visitors, or he might watch TV or listen to books.  Or take a nap!

• 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.

• Mike has had at least one bout of aspiration pneumonia which he fought off with antibiotics.

• In December, Mike mouthguard went missing.  We X-rayed him, and determined that he had not swallowed it, since he wasn't choking or uncomortable.  Guess what!? We recovered it after a remarkable 6 full days when he expelled it using his Cough Assist Machine.  We don't use the mouthguard anymore!

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

• Mike has ongoing pain, either from stiffness or pressure sores, or other issues that arise.  He is taking hydromorphone to help with pain and breathing.

• He can not speak, and relies primarily on eye movement to communicate with us.  His ability to use his eye-gaze computer has been diminished.

• Mike's only way to intake food and medicine is via his stomach tube.  He takes nothing orally anymore.

• Mike continues to use a non-invasive ventilator known as a Bipap machine to assist his breathing.  He has used it 24 hours a day since about January. In addition to declining respiratory function, Mike also uses a Cough Assist machine, and a home suction machine so that we can keep his airway clear. 

• Late last year, we had our first ever elevator incident and Mike was stranded downstairs for several hours before we could get him upstairs.  We were not trapped in the elevator, and it was fixed the next day, but it was a minor adventure.

This year, we stayed close to home.  Mike was thrilled to have so many friends and family come to visit us.  Your visits made our day and we are so grateful to have so many loved ones, both near and far.  Here are some of the visiting highlights.

As Mike's ALS progressed, it became more physically more difficult for him to advocate,  but we added our voice wherever we could.  

We are very proud of the following accomplishments:

• Top Fundraiser for the Halton 2024 Walk to End ALS.

• Hosted our MPP Effie at our home to highlight the needs of ALS patients living in the community and underline the need for dedicated funding.

• Spoke directly to Doug Ford, Premier of Ontario, who responded to a text request for imperative funding.   He promised the requested $6.6 Million, and ended up allocating $13.6 Million to ALS Society of Canada and ALS Clinics in Ontario.  This was a first-of-its-kind commitment in Canada and we are proud to have played a part.

• Mike was awarded the King Charles III Coronation Medal for his role in ALS advocacy for the past 7.5 years.

• We were interviewed for a Readers Digest article.

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

• Lend our voice to various surveys, clinical studies and interviews as asked. 

• 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.