My Huntington disease journey progresses (photo credit) I think it’s starting for you. I stared at my neurologist and felt his words strike me like an assault. I’m sure I would have fallen over if I wasn’t seated. Did the room suddenly get smaller? He continued after a pause. “Are you surprised to hear that?” “Uh, no, not really. I guess,” came my dry response. The “it” he was talking about was the onset of the movement disorder component of Huntington disease (HD). The time period where an experienced neurologist can observe signs of motor symptoms in a person and determine th ..read more

Feeling overwhelmed is no way to live (photo) We’ve all been overwhelmed at different points in our lives. The stress from life’s numerous pressures weighing down on our heads. The sensation we’re being pulled in a million different directions. The anxiety produced from the fear that something will slip through the cracks. Work Family Health You name it. It all adds up. For those of us with Huntington disease (HD), this kind of pressure can be a trigger for a mental health crisis. Are there strategies to help with this feeling of being overwhelmed? Absolutely. Here’s one. Let ..read more

He wasn’t hurt, but it scared me Photo by John Fornander on Unsplash Some of the earliest symptoms of Huntington’s disease are related to mobility and movement. Unsteady walking Dropping objects Falling Last week I was carrying my son on my shoulders. He’s not quite 5-years-old yet, but he’s already over 50 lbs (23 kg), so he’s no lightweight. As I was bending down at the knees to allow him to slide off my back to his feet, I lost my balance and fell to the left side. His foot was caught between the floor and my butt leaving an imprint from the seam in my jeans pocket on the top of ..read more

“8 Ways Huntington’s Disease Changed My Life for the Better” Photo by alexander bracken on Unsplash This week my Gene Positive Column post entitled “8 Ways Huntington’s Disease Changed My Life for the Better” was published on Huntington’s Disease News. Here’s the link if you’re interested in having a read: 8 Ways Huntington’s Disease Changed My Life for the Better Thank you! Steven Beatty is a writer and registered nurse. He lives in Central Ontario, Canada with his wife and two fantastic kids. He’s on Facebook and Twitter@stevenbeatty. Steve is the author of the book In ..read more

The emotional ups and downs associated with Huntington’s disease Photo by Chris Slupski on UnsplashNeurodegeneration Huntington’s disease causes cells in the brain to die. Let’s not beat around the bush, this is a depressing fact for those of us unfortunate enough to have inherited the condition. When I sit back and reflect on what HD is doing to me, and potentially my children, it sends me on an emotional rollercoaster for a number of reasons. The ride usually goes something like this: The ride Fir ..read more

Here’s what we learned from the experience Photo by Joshua J. Cotten on Unsplashhttps://medium.com/media/d513f68bb38fdf31cfae70c1b5b9dd7d/href Last Autumn, the fundraising event I was organizing with my little group of volunteers went off without a hitch, and I was quite happily surprised. We spent a great deal of time in the months leading up to the event with planning, organizing and, well, stressing out! We also spent a great deal of time learning as we went along, and boy did we learn. The event The charity that I’m involved with is the Huntington Society of Canada (HSC) and thei ..read more

“Let Me Share Some Words of Wisdom on Huntington’s” Photo by Paul Gilmore on Unsplash This week my Gene Positive Column post entitled “Let Me Share Some Words of Wisdom on Huntington’s” was published on Huntington’s Disease News. Here’s the link if you’re interested in having a read: Let Me Share Some Words of Wisdom on Huntington’s Thank you! Steven Beatty is a writer and registered nurse. He lives in Central Ontario, Canada with his wife and two fantastic kids. He’s on Facebook and Twitter @stevenbeatty. Steve is the author of the book In-Between Years: Life after a positive Hunt ..read more

Photo by Liam Macleod on Unsplash Twice over the past couple of weeks I’ve heard about the importance of being a good Huntington’s Disease role model for my kids. Once from my Psychiatrist at my recent appointment and secondly from an episode of Help4HD radio. They talked about the fact that, as my kids grow up and learn about HD, they’re going to look to me as an example for how to manage and cope as someone living with Huntington’s Disease. This is so important and I really took it to heart. Am I going to show them that once I learned of my positive diagnosis for the HD gene m ..read more

Photo by Michelle Chiu on Unsplash As I mentioned earlier this week, I had my follow up appointment with my Psychiatrist in order to review the Tegretol he prescribed for my irritability. It went well; about as I was expecting. We chatted about my symptoms along with a review about the triggers and presentation. I mentioned that I had not had any physical episodes of anger (like punching a wall or kicking something), only verbal episodes where I snapped or yelled at the kids or my wife. This is hard for me to write about, but important. He was glad to hear about the lack of physical ..read more

Photo by Antenna on Unsplash In my line of work[^one], I often encounter people who are having trouble managing their care at home. I’m not just talking about help with personal care and that kind of thing, but also with household tasks. Unfortunately, funding for home care services is a bit tight right now in my area, so often these folks have to find other help, privately pay for services or move to some kind of supportive housing or long term care. It’s an unfortunate reality of today. The government knows this and are beginning to work towards a fix, but government fixes take tim ..read more