Matt Eagles

@matt-eagles | contributor
I’m a positivity activist. If sharing my story can help anyone ...from any community have a better life ....then I am happy co-Founder of the mental wellness tool for people and their families who are affected by Parkinson's - Parkylife- the brighter side of Parkinson's
Community Voices

Juggling everything to only do a little

<p>Juggling everything to only do a little</p>
2 people are talking about this
Community Voices

Would any of you guys consider injecting insulin for the first time kind of virtually without going to a clinic using telemedicine /video appointment?

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A Wheelchair Isn't a Bad Thing

Why is it that so many of us as parents feel sad, and even describe it as heart-breaking to learn that our child will end up in a wheelchair? It has now been more than eight years since both my sons were diagnosed with Duchenne muscular dystrophy, Duchenne is a progressive muscle wasting disease that affects every muscle in the body. Boys with Duchenne usually need a wheelchair full time from the age of 8-13 years old, this is very different for each boy. At the time, in August 2012, my sons were 1 and 2 years old. They would celebrate their 2nd and 3rd birthdays the following October and September. The way we were told the diagnoses portrayed a wheelchair as a very sad and bad thing. They didn’t get the diagnoses on the same day. Our older boy was diagnosed first, and in that doctor’s appointment, at the very same time we are being told our son had this incurable disease, the doctor informs us this is something that can be screened for during pregnancy. I didn’t think anything more of it at the time, but as more time passed, I get angrier and angrier that this was something the doctor felt was necessary to inform us of at that very moment. What was the motive? Some sort of “Don’t worry, you can still try and get a ‘better’ child, a ‘non-defective’ one?” In the past eight years, I have learned a lot. I think that some people might look at me as being in denial, because I do not feel sorry for my boys. This is just the way life is for them, and it is our job as their parents to never let them feel like they are any less of a person because they have a disability. I have often wondered, why it is that we feel sad knowing our child or someone we love will need a wheelchair? Could it be that deep down we know how inaccessible society is for someone that needs a wheelchair and assistance in everyday life? Might it be that we know how much we will have to fight for them to get the same basic human rights as every other child their age? That somehow we know how unequally we treat disabled persons in our society? I think this is something that is worthy of discussion and thought. We tend to feel sorry for disabled people, but who benefits from that? Certainly not the disabled person, not our society, not ourselves. I think we would better spend that energy voicing what is wrong in the structure of society that puts the disabled person in the situation that makes us feel sorry for them. This situation is something man made, and therefore not permanent and unchangeable. Everyone would benefit more if we stopped feeling sorry for disabled people and instead tried to be more inclusive.

Matt Eagles

Parkinson's: What to Know When People Stare

People stare at unusual things, right? Things they are perhaps not expecting to encounter. Children too, they are the worst culprits, aren’t they? They often have to be pulled away by the hand by equally inquisitive but more refined adults. This is natural behavior, children want to learn about the world, what’s right and wrong, what’s so-called “normal behavior” and, more importantly, how to react to situations they may never have encountered before. I remember one particular occasion vividly. It was when I had relatives visiting over Christmastime. My Parkinson’s was so bad I had to crawl (this was actually a regular occurrence at this time, and even my parents’ two Labradors didn’t bother investigating as they considered it quite normal to see me on all fours) out of my bedroom to go downstairs. Walking down the landing was my cousin’s young daughter who was astonished to see an “adult” crawling down the hallway in her way. She came closer and stood, mouth agape, staring at me, her gaze barely moving from this bizarre scene she had happened upon whilst making her way downstairs to have her breakfast. Slowly she mustered the courage and asked in a very concerned manner if I was OK and why I was on the floor . I asked her if she had ever seen the film the “Wizard of Oz.” She had. I said I was like the Tin Man without his oil and my body had frozen up so I could barely move, and that once my medication kicked in I would be back to normal. Happy with my explanation she continued downstairs and went to have her breakfast. She never stared at me again and we are now the very best of friends. This encounter taught me several things: 1. Never feel you cannot explain why you look or walk like you do — be honest . 2. Be natural and try not to feel self-conscious or angry and don’t feel there is an agenda in why people stare. 3. Children always stare to try and make sense of their world. 4. People staring is a chance to educate them. 5. It’s not necessarily the information you’re delivering that will have the most impact, it’s the context with which that information is given. If people stare at you because of your condition, what would you add?

Community Voices

Signs I’m Struggling

<p>Signs I’m Struggling</p>
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Community Voices

What are the pro's an con's of the increase in telemedicine appointments for people like us with chronic conditions ?

I have Parkinson's so Im anxious that i may twitch too much and go out of view , or my internet might crash , or my voice might wear out and I might not be able to speak properly . Just wondered what anyone else thought ? #Anxiety

Community Voices

What's your best advice for someone just diagnosed with #ParkinsonsDisease?

Share what you think everyone who just got their diagnosis should know #ChronicIllness

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Community Voices

What are the most pressing issues and what worries you the most about coming out of lockdown post Covid ?

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Community Voices

My top tips for surviving lockdown #COVID19

Have a daily routine ! Dont spend the entire day waiting for updates , keep and interest in what you are doing , however humble you may feel it might be .

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