I had an insightful conversation with Mike Belleville in the latest Let’s Talk, Aging interview as he shares his post-diagnosis journey living with Lewey Body Dementia. He discusses how he and his wife learned to navigate his diagnosis and symptoms together and highlights the advocacy work he’s been able to participate in since his diagnosis.
I am a firm believer that individuals living with dementia are not behaving in a certain way because of their dementia, but instead trying to communicate with us in a new way. Mike’s willingness to share his dementia diagnosis journey empowers so many individuals living with this disease, and shines a light on the fact that there is life after a diagnosis.
I’m excited to announce that his interview is now available on iTunes and YouTube, and I look forward to sharing his great work with all of you.
Listen and download Mike’s interview on iTunes: https://itunes.apple.com/us/podcast/lets-talk-aging-mike-belleville-on-living-beyond-lewy/id1447902026?i=1000427213456&mt=2
Read Mike’s Bio:
Mike Belleville was diagnosed with younger-onset Alzheimer’s disease in2013 at age 52. In 2016, his diagnosis was changed to dementia with Lewy bodies.
Prior to the diagnosis, Mike was employed as a senior technician for Verizon. His job responsibilities included maintaining network and telecommunications circuits and training new hires.
Initially, Mike began to notice changes in his memory and attention at work. Brief tasks were requiring more time and support to complete, multitasking became challenging, and several co-workers even noticed that Mike would repeat himself in conversation. He began to get lost while driving, and on one occasion, even pulled into the wrong driveway. However, the turning point occurred after an argument with his spouse, Cheryl. The next day, Mike had no recollection of the incident and was stunned by his hurtful and uncharacteristic remarks.
Mike shared his concerns with a neurologist who conducted an MRI, spinal tap and neuropsychological testing. After ruling out stress, depression and Lyme disease, Mike was diagnosed with younger-onset Alzheimer’s disease. A second opinion at Massachusetts General Hospital confirmed the diagnosis of Alzheimer’s.
For months after the diagnosis, Mike was withdrawn and isolated. He continued to work but pulled away from friends and hobbies. He continued to experience changes in personality and behavior – becoming quick to anger and experiencing hallucinations. After an additional round of testing in 2016, Mike’s diagnosis was changed to dementia with Lewy bodies – a type of dementia with symptoms that can mimic Parkinson’s disease. Mike had to finally leaving working in Aug 2015.
After taking time to grieve, Mike began to focus his energy on advocating for others living with Alzheimer’s and other dementia. He connected with the Alzheimer’s Association Massachusetts/New Hampshire chapter and began participating in early-stage support groups and social engagement programs. After attending an education program through the chapter, Mike began planning for the future and established powers of attorney for health care and property, a living will and applied for Social Security Disability Insurance (SSDI).
Mike reports that “getting involved with the Association lifted me out of my depression.” He eventually joined the chapter board and continues to participate in awareness, fundraising and advocacy events on behalf of the Association. Mike is also currently in the process of searching for a clinical trial through Alzheimer’s Association Trialmatch®.
As a member of the Alzheimer’s Association 2016 National Early-Stage Advisory Group, Mike continued to raise awareness of the stigma associated with younger-onset and give hope to others who have been recently diagnosed. Mike’s message is simple, “After getting a diagnosis, you still have a life to live, and it can be a good quality life for as long as you can make it that way.”
Mike and Cheryl live in Bellingham, MA. Together, they have three children and five grandchildren.
He has spoken at numerous fundraisers for Alzheimer’s as well as training sessions for people working in the Dementia related fields. Testified at the Massachusetts State House on more than one occasion to get bills passed to improve the lives of those living with Dementia. Also, having traveled to Washington the last 3 years in a row to advocate for more funding to the NIH for research. Most recently was a Keynote speaker at the 2018 Alzheimer’s Disease International Conference in Chicago, Il.