Yes, there is no cure, but …

After, “Is there a treatment or cure?” one of the most frequently asked questions that the Kennedy’s Disease Association receives is, “What can my husband (or friend, or father) do to help ease his symptoms?”

There are some commonsense principles that can help minimize the impact of certain symptoms as well as maintain, or improve, your quality of life. Some of these are also good for your general health. A few examples follow:

• Stay active – This is the best way to maintain your quality of life. Keep engaged in activities that stimulate your mind, spirit and body. Look for new activities and hobbies that will be interesting and keep you active.
• Stay engaged – Maintaining a support system is critical to your mental and emotional health. Family and friends help keep your mind stimulated. A good laugh is one of the healthiest activities you can participate in.
• Maintain a healthy weight – The more weight you carry, the more difficult it is to remain active and mobile. Excess weight also impacts your heart, lungs and joints.
• Exercise regularly, but smartly – Some exercise is good, but too much can be detrimental. I have found that performing light exercises every day minimizes or eliminates joint and muscle pain. It also stimulates my heart and lungs as well as my motor neurons and muscles. There is a ‘Smart Exercise Guide’ on the KDA website you might want to review. Ask your doctor to recommend a physical therapist who is familiar with progressive motor-neuron diseases. There is also a six-part series on easy exercises that can improve your ‘quality of life’ as the disease progresses.

The second best advice I can give is:

If you aren’t already active or engaged, “don’t try to add too much into your daily routine all at once.” Habits need to be changed over time.

 

• Discuss and prioritize the above opportunities with your family and friends.
• Select the highest prioritized opportunity. 
• Transform the opportunity into an activity that you feel you would enjoy doing.
• Develop a plan on how to implement the activity. Write the steps down – visualize them. Note: If you have other health issues, check with your doctor before implementing any exercise program.
• Ask for support from those who are willing to help. An exercise partner, for example makes the task more fun.
• Implement your plan.
• Track your results and review weekly how you are doing.
• If necessary, adjust your plan.

After thirty days, start the process again with the next highest prioritized activity. Thirty days later, add another one in. Within no time, you will be active, engaged, have more energy and feeling better.

The best advice I can give is:

“Stay safe." 

• Pace yourself
• Don’t overdo
• Try to make it fun.”