With a Little Support
by Veronica McTiernan
For several years after I was diagnosed with multiple sclerosis in 2004, I insisted that I did not need any assistive aids in order to continue living my life as I wanted.
At first, my MS affected me minimally. I had some balance issues, and some weakness on my right side. I walked with a little hippity hop, but did not trip, was able to do stairs as long as there was a rail or a friend to lean on, and could walk a fairly good distance. These activities often wiped me out, but I could do them, and that is what I focused on. I routinely dismissed using a cane, saying I didn’t need it and was able to do just fine without it, but in reality it was pride that was playing with my head. I simply did not want others to see me using an assistive aid.
Then one day in 2006, I happened to find a cane in my closet that I had been storing for someone else. I decided to use it to walk along my uneven yard to fill the bird feeders. Then I started using it while gardening to help me get up and down and in and out of flower beds. Yes, I was self-conscious about what the neighbors would think, but I felt the freedom of using the cane immediately, and I soon started calling it my “garden cane.”
Veronica with her “Garden Cane”
However, other challenges began cropping up. While my garden cane helped, it didn’t address my fatigue when digging with a regular shovel or garden fork. I needed both hands to manage these heavy tools, which left me no arm to use to lean on anything and no strength to dig while standing. My Internet searches for “adaptive gardening” only brought up suggestions of raised flower beds. This didn’t help me with my already-established perennial beds, so I would just be discouraged and think I had to settle for a half-hearted garden full of weeds.
Then one day I thought to search for “adaptive gardening TOOLS.” I learned about ergonomic tools with extensions and cuffs for attaching to one’s forearm. Now I could successfully garden with one hand while standing (and leaning on my garden cane, of course!). The hand tools also gave me the leverage I needed, and the garden seat I ordered completed the package for me. The first day I got the tools I spent two hours in my garden, and I did so much work that I got a blister on my thumb. It was a badge of accomplishment for me: my first gardening blister in 10 years. I was delighted that what I felt when I finished was a very satisfied tiredness, not the dreaded MS fatigue. My new mantra? “I cane so I CAN.” Now, without embarrassment, I can whip out my collapsible cane from my bike bag after completing a ride on my bicycle if I feel the need. Or I can use a PINK cane to match my dress for my niece’s wedding.
I wish I didn’t have MS, and I dream of gaining back what I have lost, but in the meantime, I will continue to use my cane, adaptive gardening tools and whatever else I find I need. Where I used to see assistive aids as pointing out my weaknesses, I am now so aware of them being just the opposite. They allow me to be who I am, and to do what satisfies my soul. What else is there in life?
Veronica McTiernan works as a behavior therapist with people with developmental disabilities in Westchester County, NY. Besides gardening, she enjoys biking, adaptive skiing, and being in the great outdoors with her friends and family.
Consult a physical or occupational therapist about mobility devices that will work best for you, and how to use them safely. An OT will also be able to recommend both low-and high-tech assistive aids for various activities of daily living. Call the Society at 800-344-4867 for referrals. For more information about the range of assistive aids available, search for “assistive devices” at www.nationalMSsociety.org or browse www.abledata.com.
Seeking Self-Help Group Leaders
Self-Help Groups include people with multiple sclerosis, their families, friends, and other care partners who gather regularly to share common experiences and concerns, give and receive emotional support, and obtain information on living and coping with MS. These groups are led by people with MS and/or their family members.
- Are you interested in meeting and networking with others with MS who live near you?
- Are you seeking support and looking to learn from others also living with MS?
- Join the movement and help create a vibrant MS network in your community!
The Chapter is seeking new Self-Help Group Leaders to start and lead affiliated MS self-help groups throughout the Chapter area. Self-Help Group Leaders are very valuable volunteers for the National MS Society!
If you have any questions about self-help groups, or if you are interested in starting a group in your community, please contact Heidi at firstname.lastname@example.org or 1-800-344-4867, option 2.
Commit to Eat Well
Take control of your health, starting with a commitment to eat well. Here are some suggestions for how to do that from the Can Do MS staff and Andrea Glenn, a Society volunteer diagnosed with MS in 2003.
- Eat three meals every day and always have breakfast. People who skip meals tend to overeat later.
- Make healthy snacks and meals ahead of time so you don’t give in to temptations.
- Eat more vegetables and three pieces of fruit every day. Add leafy dark greens to your lunch. Snack on raw fruit and vegetables such as carrots, apples, or celery.
- Be aware of portion size. Many restaurant meals are large enough to feed two people. Take half home for lunch the next day, or split an entrée with someone else.
- Eat whole grains such as brown rice, whole grain bread, and whole grain cereals.
- Enjoy a couple of low-fat dairy products every day, such as 1% milk or yogurt.
- Use olive oil or canola oil (in moderation).
- Read food labels and pay special attention to saturated fats and trans fats.
- Drink plenty of water - it’s calorie free!
- Enlist a friend or family member to share your goals for better eating. It helps to be accountable to someone else.
- Keep a food diary. Writing down everything you eat will help you better evaluate whether you’ve improved your food habits.
Nutrition Tips for Managing Fatigue
- Have a small snack every few hours to refuel. Pair a protein (low-fat cheese, 1 tablespoon of peanut butter, handful of almonds) with a fruit.
- Shrink meals and eat more frequently. For example, save half your lunch and eat the rest three hours later.
- A small protein snack in the afternoon, such as a cheese stick or peanut butter, can help you be more alert.
- Avoid large portions and desserts. Both will increase fatigue.
- Avoid too much caffeine. It can lead to restless sleep and increased anxiety.
Visit www.nationalMSSociety.org/diet for links to recent research, recipes, articles, brochures, videos, and more.
Family Connections: My Sister, Our MS
By Kate Bryant
Growing up, I was never the athletic twin - the little one, the artistic one, the quiet one, but never the athletic one. My twin sister, Carrie, (known to her family and friends as ‘Bear’) on the other hand was naturally coordinated, strong, and determined. From an early age she excelled at three different sports, and created an identity for herself as the competitive, active, athletic twin. Three weeks into my freshmen year of college, and one week before she was to begin her college career, Bear was diagnosed with multiple sclerosis and would be deferring her start date. When I received this news, I remember lying in my dorm room bed, crying on the phone, begging to be able to come home and to see Bear. Bear’s diagnosis seemed so wrong. How could such a young, athletic, smart woman be challenged by such an unpredictable and sometimes debilitating disease? Why was it Bear lying in the hospital bed in Boston and not me? During those first months when MS became a daily reality for Bear and by extension, my family, I remember wanting to gain some semblance of normalcy and control that did not seem possible for us anymore. A few years after the initial diagnosis, I joined the National Multiple Sclerosis Society Marathon Strides against MS team. Running for the Society has allowed me to regain some control over my initial anger. Although the thoughts of unfairness still haunt me and Bear, I believe that every mile that I run for Bear, and every dollar I raise, brings researchers and doctors closer to finding a cure.
Twin sisters, Kate and Bear Bryant, at the finish line of the Boston Marathon.