5 posts tagged “coping”

Going the distance for MS awareness

Posted March 6th, 2017 by

Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to cross Austria off her list. See what she has to say about overcoming the physical limitations of her condition.

You’ve run 54 marathons and 41 of those have been after your MS diagnosis. How has running changed for you since your diagnosis?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

Running has given me so much. When I was first diagnosed and depressed, running was my therapy to cope with the overwhelming sadness. However, I started tripping and falling while running. I thought I was tired from overtraining. I soon learned that I was falling because I have a common symptom of MS called drop foot. My running became laborious and depressing. My neurologist told me to lower my expectations and that ignited a fire in me to not give up. I found an orthotist and he fitted me with an ankle-foot orthotic (AFO). It’s made of carbon fiber, so it’s light and flexible enough for running. It is not necessarily made for marathons, per se, but I make it work despite the cuts and bruises. I guess that is a long way of saying that running has made me stronger.

Aside from your custom carbon fiber ankle foot orthotic, what other things do you do to help with your running?

I cross train to help with cardio-vascular fitness. My husband and I ride 20-30 miles along Pacific Coast Hwy very early in the morning (traffic scares me, especially being clipped into the pedals).

I also lift weights. My right thigh is very weak from MS and I can only lift it 3-4 inches off the ground. I do a lot of compensating with my left side when I run. I try to strengthen all of my muscles to try to keep them in balance, but I do have atrophy in my right leg.

In general, what advice would you give for someone living with MS who wants to work towards becoming more physically active?

First, I have to throw in the caveat to talk to your doctor first! Next I suggest setting small, attainable goals. For example, if you don’t exercise at all, make a goal to walk 10-15 minutes, then start increasing by 5-10 minute increments when you feel confident.

My very first running race was a marathon (because I’m crazy). That was a big goal and I attained it, but I suffered a lot at the beginning. My first training run was down my block and I walked back home crying. My husband likes to tell everyone that story! But I kept at it and in 6 months I went from one block to 26.2 miles. It was a slow marathon, but I did it! However, I should have signed up for shorter races first to keep my morale high.

Small attainable goals and small concerted efforts to make change!

Right now you’re in the middle of a big idea you had to raise money for the MS Society. You committed to running 7 marathons on 7 continents in the span of a year. You’ve already run in Cape Town, South Africa; Buenos Aires, Argentina; Honolulu, Hawaii; King George Island, Antarctica; and Tokyo, Japan. Next up are Vienna, Austria, and Christchurch, New Zealand. What’s been your favorite experience so far? What’s been a challenge?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

I’ve had a lot of great experiences. My favorite marathon so far is Cape Town. The scenery was beautiful, the people were very friendly and even though it is a large international marathon, it felt like a tight knit community. The highlight of the trip for me was connecting with the Multiple Sclerosis South Africa group. They were absolutely lovely and even though our trip was short, we bonded. Meeting people and making friends are my favorite things about my trips. People really make it more special.

The White Continent Marathon was by far the biggest challenge. I was prepared for the cold, but I underestimated the terrain. It was very rocky (from pebbles to boulders) and it was so painful on my feet. I had to walk a lot of it because my right foot kept sliding. I can feel my left foot and use my toes to balance myself. However, my right foot is numb and I cannot move my toes well. That, coupled with a rigid footplate on my AFO, made it hard to keep steady on the undulating terrain. I was sore in places that I didn’t know had muscle!

We’ll be following up with Cheryl once she finishes her final two races in Vienna, Austria, and Christchurch, New Zealand. You can keep track of her progress on her blog!

On PatientsLikeMe

Cheryl talks about having drop foot, something reported by 990 members on PatientsLikeMe. She’s had success using an ankle foot orthotic (AFO) to treat it. Here’s what members have to say:

In fact, members have a lot more to say about this – 101, 941 forum posts worth, to be exact. See what they’re saying and learn more about who’s experiencing drop foot!

What are you doing to raise awareness about MS this month?

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“The most important thing is to know you are not alone” — Member Vicki opens up about her TBI

Posted September 13th, 2016 by

Vicki (Vickikayb) is an avid gardener, volunteers at a wildlife rehabilitation center and loves to cheer on the Kentucky Wildcats. She’s also been living with a traumatic brain injury (TBI) since 2004. In a recent interview, Vicki shared how she lives a full life in spite of her condition and how it’s inspired a new interest in brain injury advocacy: “Who better to give a voice to this cause than someone who is living with a TBI?”

Check out what she has to say about discovering new coping methods and finding support from others who understand.

Can you tell us a little about yourself? What are your hobbies and interests?

I am originally from the Kansas City area in Missouri until 2010 when I moved to Kentucky to be closer to my daughter and her family. I received my traumatic brain injury in 2004 from an impaired driver who rear-ended me going 74 miles per hour while I was at a dead stop.

I spend my time volunteering for Kentucky Wildlife Center in Lexington, KY. We take in all kinds of wildlife babies and rehabilitate them so that one day they can be released into the wild again. I helped them with a vision that they had to raise a vegetable garden with no pesticides which has been successful. I am also helping with a garden at Neuro Restorative where I attend therapy sessions. I find working in the dirt and growing plants, vegetables and flowers is a successful coping skill, which is helpful when I become emotional.

I also volunteer with Brain Injury Awareness of Kentucky. Just this past summer I helped distribute bicycle helmets, bringing awareness to the safety of riding a bicycle with proper equipment — a helmet — no matter what age. We fitted the helmets to children, teenagers and adults.

When it comes to watching sports on TV or at a stadium, I am there supporting my team, the Kentucky Wildcats. I am always eager to learn about different topics, especially brain injury, which is close to my heart. At the end of the day I am working towards being an advocate for any type of brain injury. Who better to give a voice to this cause than someone who is living with a TBI?

What was your diagnosis experience like?

Getting my diagnosis was the easy part for me; the difficult part was finding the right help I needed to start my journey to healing. At the time I was still living in Missouri and my daughter was living in Kentucky. So everything was left up to my doctor and me to work on my deficits, which at the time I didn’t view as severe. I participated in physical therapy and speech therapy until I hit the amount of units you were allowed per year on Medicaid. My daughter found out from other people that I was not doing as well as I was portraying. I was broke because of my impulsivity with money and I was sleeping on other people’s couches here and there. This is why at the end of 2009 I moved to Kentucky because my daughter was expecting her first child and I wanted to be close by.

Even in Kentucky I continued the downward spiral till I hit bottom, not taking my medication when prescribed, sleeping at odd times of the day and not eating well. That is when my family said they didn’t have the education or knowledge to be able to help me. That is how I ended up at NeuroRestorative in Georgetown in 2011. I started in the residential program where during the days I received occupational therapy, behavioral support, counseling, and speech therapy. Since that time, I have graduated from speech therapy and moved out on my own in November of 2012. I am fortunate that Kentucky has a waiver program that covers the cost of these services. I wish more states would have this option as well. This is when my journey to healing started!

In your profile you talk about writing down your thoughts as a form of therapy. How has it helped you manage your TBI? Do you have any other coping methods?

When I came to Neuro I had no idea what coping skills were, let alone how to practice them. First of all, I learned about the Coping Skills Triangle which consists of thoughts, behavior and emotions (pictured).

At first I started journaling for my sessions with my counselor so I wouldn’t forget to talk about certain topics. That’s when I started seeing that writing was a way to express myself. At the time they had a newsletter at NeuroRestorative in which I decided to write each month entitled, “Just My Thoughts,” where I would write about my struggles, coping skills and any issues that I was going through at the time. My purpose was to show other participants that they were not alone and that other people were struggling just like them. I have everything that I have written since 2012 and recently have put them all into a blog called “Learning Vicki.”

Furthermore, I have a big list of different coping skills that I use to help me when I feel overwhelmed or I’m not thinking clearly. I had them written down at first so I could pull them out when needed but today I find myself just doing them without thinking. Some of these coping skills are taking pictures of nature, walking my dog and visiting with my neighbors. At home I even turn up the radio and start dancing in my apartment. I do whatever brings enjoyment to me and takes my mind off the situation until I am ready to handle what is bothering me.

You’ve mentioned that “education is the biggest tool you can give other patients.” What’s the most important thing you’ve learned in your journey with TBI?

First of all, I have put myself out there to others to let them know that they are not alone on this journey. I feel the most important thing I have learned in this process is to share my experience. When I first found out that I had a brain injury, my thoughts were all over the place and I wondered what my next step would be.

I found out that a few of the people I went to high school with also had head trauma. So, I contacted them personally saying that I also had a TBI and maybe we could support one another. I kept talking to one friend in particular to see how he was doing and gave him an outline of how I began my treatment — who diagnosed me, how to talk to his doctor and how to receive therapeutic rehabilitation. That was a year ago, and I am happy to say that friend is now back at work and starting to regain some of his life back.

If I can’t answer a question for someone, I will see if I can find out the answer and get back to them. The most important thing no matter what disease or injury you might have is to know you are not alone and there are others who are either going through the same battle or have beaten it. We all need to be each other’ cheerleaders, to encourage each other to hang on because tomorrow is going to be better and we will get through it together.

How has it been connecting with others on PatientsLikeMe?

It has been a wonderful experience being able to talk to other people who are going through the same illness that I’m experiencing. It helps because you realize, “I am not the only person going through this or that feels like this.” It has also taught me to be thankful for what I have. It has been a tool to educate myself on what some other people might be trying or what didn’t work. I love being able to keep track of my moods, my emotion charts and how I’m feeling overall, and to read others’ messages of encouragement.

I also like sharing my data with researchers to help them with clinical trials, and being able to find articles that help me better understand my condition. It is great to be able to go to one site and find everything that you need. I wish I had known about PatientsLikeMe back in 2004. Every chance I get I tell people to go check the site out!

 

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