September 2016 – World CP Day

Nicole Luongo

Nicole Luongo is an author, disability advocate and a big fan of DIY fitness training. She has a message for everyone – get moving! Nicole is today’s guest blogger…

Fitness with CP

I’ve enjoyed reading health/fitness magazines, watching exercise routines, and working out for as long as I can remember. In high school, I rode an stationary bike while listening to my favorite music. By the time I enrolled in college, I’d purchased a NordicTrack. I loved “skiing” (something I could never do because of CP) indoors and breaking a good sweat. I did cardio/strength training classes at the gym for years, then graduated to working out at home. I exercised not only because I enjoyed it, but because it was good for cardiovascular health, weight loss, etc. What I didn’t realize is how beneficial — and essential — physical fitness is for people with cerebral palsy.

Why work on your fitness?

The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) defines physical fitness as “a general state of health that results in your ability to carry out daily tasks without getting too tired.” It wasn’t until decades later — when I had selective dorsal rhizotomy (SDR) surgery and became a disability advocate — that I learned the damage (often referred to as “early aging”) spasticity, or abnormal muscle tightness, does to our bodies. It can cause a decrease in endurance and walking as well as muscle and joint pain. Plus, those with CP who can walk independently with or without walking aids increasingly need wheelchairs. Did you know that we use 3 to 5 times the amount of energy that non-disabled people use when they move and walk? It’s no wonder fatigue is one of the common problems reported by people with CP as they get older!

For adults, the American Heart Association recommends “at least 30 minutes of moderate-intensity aerobic activity at least 5 days per week for a total of 150 OR at least 25 minutes of vigorous aerobic activity at least 3 days per week for a total of 75 minutes; or a combination of moderate- and vigorous-intensity aerobic activity AND moderate to high-intensity muscle-strengthening activity at least 2 days per week for additional health benefits.” There is no evidence to suggest that these requirements should be any different for people with cerebral palsy.

My workouts

My favorite workouts combine cardio and strength training. I like to pack as much as possible into 30 minutes; sometimes less or more, depending on the routine. Don’t worry if modifying is necessary— and, don’t let that stop you from exercising! It’s easy to adapt most moves to your ability and/or fitness level. For example, I use a chair to do burpees and for balance while doing lunges. Stay hydrated and remember to stretch (very important if you have CP) before and after any activity, especially if you need more than what’s included in the workout. Keep this in mind: The only form of exercise that matters is what you’ll do. If you’ve never worked out before, start slow and consult your doctor.

I recently purchased a Pilates machine. Now that I’m 43, it’s been fun learning slow, non-impact exercises excellent for core strength, increased range of motion (thru stretching) and stabilization — areas in which people with CP are usually lacking. I firmly believe that a life-long habit of consistent exercise helped maintain my high function level. It’s important to learn about your body and how exercise can help the effects of cerebral palsy as you or your loved one ages. Physical fitness is one of the best gifts you can give your body and your CP. Don’t wait until it’s too late — get moving!

About Nicole

Nicole Luongo is an author and a disability advocate dedicated to raising awareness for selective dorsal rhizotomy (SDR), a life-changing surgery for adults and children with cerebral palsy. Nicole is also on the international World Cerebral Palsy Day Committee.

Nicole’s work has been published by The Mighty and The Huffington Post. Her blog is nicoleluongo.com.

Follow Nicole on Facebook – What CP Looks Like, Instagram – @whatcplookslike and on Twitter – @green4cp, and watch Nicole’s ‘Planking for Cerebral Palsy Awareness’ on YouTube.

Blogging for World CP Day

You too can be a guest blogger on the World CP Day website! Find out more…

27/09/2016/by Alex McGrath

Quality of Life

Dan Chalcraft

Guest blogger, Dan Chalcraft, from Canada talks about how running has changed his life…

Why run?

I like to run because it is a good form of exercise and I enjoy being outdoors. I run frequently which is three to four times a week and longer runs on the weekends especially if I am training for an event.

I ran because I had never participated in a half marathon before and thought, why not run? It is something I enjoy doing and why not do it to really push your limits. I ran three to four times a week with some of those sessions being with the Running Room. In addition, I participated in a running clinic which was every Tuesday where each session focused on an aspect of training and then we’d go for a short run. Just like being part of the cerebral palsy (CP) community, you are part of an extended family with your running group.

A goal

It is good to have people there who are working towards the same goal and there to motivate you to achieve a great time in the race not just finish it. Although my cerebral palsy affects the left side of my body impacting my left hand and leg, that doesn’t affect me from being able to run and run quick.

My time for my first half marathon (the Scotiabank Charity Challenge) was 2:09 and for my age category it was in the lower section of finishers, but that just means I need to run faster this year to improve my time and train harder. Despite the goal of trying to improve my time, I didn’t participate in the half marathon this year due to a strained Achilles tendon injury; instead I walked the 5 km course while raising money for cerebral palsy.

I think that it shows people regardless of the severity of your CP, you can achieve anything. I can drive, run a half marathon and despite the fact that I have never been in a relationship; it gives me hope that others like me such as RJ Mitte and Nicholas Hamilton have girlfriends so why can’t I. I would like to have a wife, family, house and be able to provide for my family by having a well-paying job. I am certainly on the right path.

Discovering your strengths

Another community I am a part of is the disability community. I work at the Cerebral Palsy Association of British Columbia. I like working at the Association since it is giving back to the disability community and it is showcasing people’s abilities with CP that can really open others’ minds and demonstrate what they are capable of. Everyone with CP has strengths; it is just about unlocking that potential. The Association has helped me tremendously since it’s provided an outlet for me to express myself.

This World CP Day, I want to share my story to inspire others to enjoy their quality of life, join communities and use their voice to be part of a change and greater awareness. I want to keep participating in running a Half Marathon and aim to run in the Scotiabank Charity Challenge next spring. I want to start running and training early and take extra work to hit my goal of 1:50. Getting back into the rhythm of running will be tough, but I am up for the challenge. Do the best with what you have, keep a positive attitude and a smile on your face.

27/09/2016/by Alex McGrath

Quality of Life

Romeo Riley

The day the writing appeared on the wall was the day…Romeo was born!

On August 31st we celebrated Romeo’s birthday! That was the day he was delivered to me by my publisher. (I told her she was also now an obstetrician!) But the idea for him, and the beginning of the book actually happened at school one day.

I’d been writing silly stories about some of my students (many of whom have CP.) The kids loved hearing the stories I made up about them. Also, we’d been reading a popular funny book in our class. The students enjoyed the humor—but I wondered how much they could identify with a character whose life was so much different from theirs.

I began looking for funny books that had characters who were like my students–but I didn’t find many. So I wondered if I could create one. I didn’t want it to be a teaching tool; I just wanted it to be fun. I wanted my kids to have a hero (even if he’s a comical one.) And I wanted the world to see that kids with disabilities are still kids who have fun and live fulfilling lives.

The character of Romeo is sort of a mixture of students I’ve known over the years. Fellow staff members have also shown up in the books. But in a way, I think Romeo represents all of us. People identify with him because he makes goofy mistakes. And like most of us, he really tries to do the right thing.

I’m just starting my 20th year of teaching this school year. The majority of those years, I’ve worked in the exceptional student environment, and particularly high medical risk. Most of the kids I’ve known and loved use wheelchairs for mobility and eye gaze or simple signs and/or communication devices to express themselves. Fortunately, I’ve been able to keep some of the same students for several years, which is valuable because sometimes it takes a while to know someone. It takes time for students to open up and time to develop relationships with families.

I think trust is the biggest issue. I may not always do the right thing for you or for your child, but I hope I can be an encouragement. I’m so impressed by the courage of parents and grandparents who give so much of themselves in the care and well-being of their children. And I can only guess at how hard it must be to walk away and leave those precious kids in the hands of someone else to care for them each school day.

Or, if you, yourself have a disability, I hope something like the “Romeo” series can bea positive and bring more acceptance to our communities. When “Romeo” first came along I was worried I might offend someone. I didn’t want to make light of someone having a disability. What I really wanted to express was this “joy” in living—a thing so many of our kids possess in spite of their problems. I wanted to express that “thing” that keeps us laughing and keeps us coming back for more. I know my kids understand a lot more than they can tell me. And when they laugh at the punchlines, that’s when the sun breaks through!

Over this past summer I worked on a project I hope will become a new series. It doesn’t have a special needs hero this time; instead, it has animal characters. This series will be for all abilities (just like The Romeo Riley Series.)

But if people keep enjoying the series, I plan to do a new “Romeo” book in the future. It is my hope that Romeo will continue to have birthdays and keep making people smile. And if Romeo can bring a bit of adventure-or invite a distant world to into his for a moment—then Romeo has done what he set out to do. After all, he’s Private Eye, Romeo Riley isn’t he? And there will always be mysteries for him to solve, and loved ones he’ll want to protect.

WEBSITES

Romeo Riley website
Romeo Riley on Amazon (USA) (First book of the series)

20/09/2016/by Alex McGrath