This Chef Won’t Let His Diagnosis Cripple His Career

Whenever I come across stories of others living with Kennedy’s Disease, I feel compelled to share their stories. Everyone deals with the news in different ways, but everyone goes through many of the same steps that I did forty years ago. This is why my blog is titled, “Living with Kennedy’s Disease.” After the shock, after the ‘no way’ denial, and the first moments of ‘oh my God’, we begin the process of learning to live with this condition.

This is another man’s story. The article, written by Sarah Freeman, is in Muchies, an online service from VICE. A short excerpt is found below.

“The 38-year-old chef’s symptoms started less than a year ago with difficulty walking up and down the stairs. A visit to a physical therapist led to another with his sister-in-law, a neurologist at the University of Chicago. There, he underwent a battery of painful tests, including having needles inserted into every major muscle group on the right side of his body, from his hand to his chef’s knife tattoo-covered calf, and then getting shocked. “Everyone was talking about it in excited voices, but not good excited, and not telling me what the f…’s going on.”

In February, a blood test confirmed a diagnosis of Kennedy’s Disease, an inherited motor neuron disease that disrupts nerve cell transmission signals from the brain to the brain stem and spinal cord. Due to its rarity—about one in 40,000 people have it, according to the Kennedy’s Disease Association—it’s a difficult disease to peg and is often misdiagnosed as amyotrophic lateral sclerosis, or ALS. Unlike the latter, there is no treatment for Kennedy’s Disease, aside from pain management for the muscle cramps that are an early and continuous symptom. His brother and niece were tested shortly later and also diagnosed. Women, however, are typically only carriers and rarely symptomatic.

“This sealed the deal on me and my wife not having kids,” Jacobs says.  … ”

Managing Pain

Most of us living with Kennedy’s Disease experience pain. Whether it is a deep muscle ache or a severe cramp, one thing for sure, it can be uncomfortable and sometimes “really painful.”

One thing that I found that helps is my daily exercise program. Since I started exercising daily four years ago, I experience a lot less painful moments. This experience made me want to read the article on “Find your path through pain” by Amy M. Avery in the current Humana Active Outlook magazine. Ms. Avery did a nice job of explaining pain as well as providing examples of ways to better manage pain.

“Researchers have found that chronic pain shrinks the brain by as much as 11 percent – equal to the amount of brain lost in 10-20 years of again. People with chronic pain have constant activity in their brain neurons, the message cells that send information to different areas of the brain. That can wear out neurons and damage connections, which can affect mood and decision making, and lead to depression.

The good news is your brain can also help you with pain. Exercise and meeting with friends cause the brain to release hormones that make you feel good. That trains the brain to remind you to do those same activities again. Meditation, tai chi, therapeutic massage, and similar activities can also help calm tensions and ease pain.”

“Movement is the treatment of choice and should a part of almost everyone’s pain management plan,” says Paul Abott, Humana Director of musculoskeletal strategies. “Activities that help stretch and strengthen muscles allow you to mover more easily. They get the joints flowing smoothly – and that leads to more pain-free motion.”

Overpowering Pain

“ … try a mix of exercise and other ideas. Experts say exercise is one of the most important pain-fighting steps you can take. Below are some tips that help take control of pain.

• Ask for help. A personal trainer can help you choose the right activities.
• Choose activities you enjoy.
• Find a distraction. Example listening to music while exercising.
• Record your progress and how you feel before and afterwards.

Other ideas to consider:

• Lose weight. It can help with joint pain.
• Stop smoking. Cigarettes can raise your chances of developing chronic muscle and joint pain.
• Have a good laugh. It releases endorphins that are natural painkillers.
• Try relaxation, like deep breathing and meditation.
• Spend time with a pet. Animals can help lower our heart rate and blood pressure.
• Listen to music you love. It will help take your mind off of your pain.

Eat to beat pain: (Story by Maggie Green, RD, LD)
Instead of popping a pill, try these foods that may help lower pain and inflammation.

• Fresh or canned salmon is rich in omega-3 fatty acids that reduce inflammation. Other sources include herring, sardines, anchovies and walnuts.
• Extra-virgin olive oil can also help remove inflammation.
• Sweet potatoes have beta-carotene that may lower pain. Other sources include cantaloupe, winter squash, carrots, pumpkin, papaya, apricots, and oranges.
• Broccoli is rich in vitamin C that helps build healthy joints. Also try bell peppers, grapefruit, oranges, cauliflower, and pineapple.
• Turmeric might lower pain. Try ginger, also.
• Green Tea might stop the body from producing certain inflammatory chemicals.

What works for you in managing your joint and muscle pain?