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.” 

Part VI - Exercises to improve your quality of life

This is Part VI of the series of exercises to improve the quality of your life as Kennedy’s Disease progresses causing lifestyle changes. Consider adding at least two-or-three of these exercises and practice them daily. As always, consult with your doctor before beginning any exercise program.
 

Feet and Leg Muscles

Because I sit a lot more these days, the potential of a blood clot increases. Two things can help minimize the potential of developing a clot.

First, MOVE every two hours. Sitting for longer than two hours increases your chances for a clot.

Second, EXERCISE these muscles every 30-to-60 minutes and especially if you have to sit for longer than two hours for some reason.

1. Knee Lifts: Works the quads and hip flexors. This exercise further strengthens the leg muscles. Sit in a chair. Lift the left knee as high a comfortable and hold for a count of five. Relax the left leg. Lift the right knee as high as comfortable and hold for a count of five. Relax the right leg. Perform 10-12 lifts with each leg (or whatever is comfortable).
2. Straighten the Leg: Works the quads. This exercise further strengthens the leg muscles. Sit in a chair. Straighten and lift the left leg out in front of you as high as comfortable. Hold for a count of five. Relax the left leg. Straighten and lift the right leg out in front of you and hold for a count of five. Relax the right leg. Perform 10-12 lifts with each leg (or whatever is comfortable).
3. Heel Raises: Works the calves, ankles, and feet muscles. This exercise further strengthens the lower leg muscles and develops greater flexibility and confidence. Sit with your feet directly below your knees (at a 90 degree angle to your thighs). Raise your heels as high as possible while keeping your toes on the floor. Hold the position for a count of two and then return your heel to the floor. Perform 15-20 heel lifts (or whatever is comfortable).
4. Toe Raises: Works the ankles, and feet muscles. This exercise further strengthens the lower leg muscles and develops greater flexibility and confidence. Sit with your feet as far out in front of you as possible while still keeping the feet flat on the floor. Raise your toes as high as possible while keeping your heels on the floor. Hold the position for a count of two and then return your toes to the floor. Perform 15-20 heel lifts (or whatever is comfortable).
5. Curl the Toes: Place a dime or penny on the floor in front of you. Pick up the coin with your toes of your left foot and drop it in your hand. Switch to the right foot and pick up the coin. Note: Even if you can’t pick up the coin, just trying to pick it up will stretch and exercise these muscles.
6. Write the Alphabet: Works the quads, calves, ankles, and feet muscles. This exercise further strengthens the leg muscles and develops greater flexibility. While sitting, use the toes on the left foot to write out the alphabet. Point with your big toe like you are writing in the sand. At first try to write ‘A’ through ‘H’ (or whatever is comfortable). After you finish your letters, switch to the right foot and begin again.

Part V - Exercises to improve your quality of life

This is Part V of this series of exercises to improve the quality of your life as Kennedy’s Disease progresses causing lifestyle changes. Consider adding at least two-or-three of these exercises and practice them daily. As always, consult with your doctor before beginning any exercise program.
 

Neck, Shoulder and Back Muscles

I wrote about ‘dropping head syndrome’ in August, but felt I need to include exercises for this important muscle group here. Neck braces, in my opinion, should be a last resort because they only support the head and do nothing to improve the muscles. That doesn’t mean you shouldn’t wear a brace if your doctor recommends one. What I am saying is that you should exercise the neck, shoulders and back muscles to help maintain their health and your quality of life.

1. Touch your Chest:  Works the neck and shoulder muscles. While sitting, place your palm against your forehead. Slowly lower your chin down to touch your chest, while having your palm apply resistance (holding your head up). Perform 10-12 reps (or whatever is comfortable).
2. Pull the Head Up:  Works the neck and shoulder muscles. While sitting, clasp your hands behind your head and slowly lower your chin down to touch your chest.  Raise your head up to the normal upright position, while having your hands apply resistance (holding your head down).  Perform 10-12 reps (or whatever is comfortable).
3. Side Turns:  Works the neck and shoulder muscles.   While sitting, place your left palm against your cheek and temple. Slowly rotate your chin 90 degrees to the left while having your palm apply resistance (keeping your head from turning). Perform 10-12 reps (or whatever is comfortable). Switch to the right hand and perform the same exercise rotating to the right.
4. Bend to the Shoulder:  Works the neck and shoulder muscles.  While sitting, place your left palm against your temple. Slowly lower your head towards your left shoulder (go about half way or 45 degrees) while your left hand applies resistance (to hold the head upright). Perform 10-12 reps (or whatever is comfortable). Switch to the right hand and perform the same exercise by slowly lowering your head to the right.
5. Bend to the waist:  Works the back and neck muscles.  While sitting and with your hands at your side, slowly lower your chest to your knees while curling your chin into your chest.  As you slowly raise yourself back up to a vertical position, curl your neck up until you are looking at the ceiling (or sky).  Perform 10-12 reps (or whatever is comfortable).
6. Shoulder Curls: Slowly raise and roll your shoulders to the front, to the top, to the back and back down to the starting position. Perform 18 rolls. Reverse the direction and perform another 18 slow rolls.
7. Bend Down and Up: Place your hands on your hips. As you exhale, slowly bend to the left side as far down as comfortable. Straighten up and slowly bend to the right side. Straighten up and slowly bend down to the knees. As you slowly straighten up, bend you neck back and look to the ceiling. Perform 9-to-18 of these reps.

Part IV - Exercises to improve your quality of life

This is Part IV of this series of exercises to improve the quality of your life as Kennedy’s Disease progresses causing lifestyle changes. Consider adding at least two-or-three of these exercises and practice them daily. As always, consult with your doctor before beginning any exercise program.

Wrist, Hand and Finger Muscles

Picking up or grasping objects becomes more difficult over time. For me, it seems like I drop a lot of things these days. And, as the muscle between the thumb and fingers weakens, you might find it more difficult to cut up meat, open a jar or pick up a glass, for example. The exercises below will help keep daily functions requiring the use of your hands easier.

1. Wrist Curls: Works the wrist muscles. Sit with your back straight and your feet directly below your knees (90 degree angle).Holding a cane (a broom, light metal bar or light dumbbells) in both hands with your palms facing up and your forearms flat on your thighs, curl the wrists up as far as possible without raising your arms from your thighs. Perform 15-20 reps (or as many as comfortable. Repeat the exercise, but this time have your palms facing down while still curling the wrists up. To increase the difficulty, increase the weight of the object being lifted.
2. Wring Out the Towel: Works the wrist, hand and finger muscles. Using a wash cloth or small towel, roll it into a 3-4” ball. Grasp the wash cloth in both hands and begin to wring it out using your wrist and fingers. Perform 15-20 reps (or as many as comfortable. Repeat the exercise, but this time wring the towel out in the other direction.
3. Make a Ball: Works the hand and finger muscles. Place a wash cloth or small towel flat on a counter. Place your hand over the towel so the heel of your hand is resting on the edge of the towel. Keeping the heel of your hand on the counter at all times and using your fingers, begin to pull the towel into your wrist to form a ball. Once you have a tight ball, reverse the process by trying to flatten out the wash cloth using just your fingers while keeping the heel of the hand still on the counter. Repeat the exercise using your other hand.
4. Finger Scissors: Works the finger muscles. Take your left hand with the palm down and fingers extended out straight. Place your index finger from your right hand in between the first two fingers. Squeeze your fingers together and hold for a count of two then relax. Perform 10-15 reps (or whatever is comfortable). Repeat the exercise using each set of fingers until you have worked all the fingers on both hands.
5. Thumb Pull: While sitting, grab the left knee with your left hand. Hook your right index finger around your left thumb. Pull on back while gripping with your thumb and finger. Pull as hard as you can while still holding on. Continue holding as long as you can for up to one minute. Grab the right knee with your right hand. Hook the left index finger around right thumb and pull once again.
6. Squeeze the Racket (Ball): Works the wrist, hand and finger muscles. Using a tennis racket, exercise putty, or a rubber ball (like a racquetball), squeeze and hold it for a count of five and then relax. Perform 15-20 reps (or whatever is comfortable). Repeat the exercise using your other hand.

Part III - Exercises to improve your quality of life

This is Part III of this series of exercises to improve the quality of your life as Kennedy’s Disease progresses causing lifestyle changes. Consider adding at least two-or-three of these exercises and practice them daily. As always, consult with your doctor before beginning any exercise program.
 

Jaw, Mouth and Face Muscles

I work hard to keep my facial muscles stimulated. I especially am concerned with mouth droop and weak jaws (creating problems chewing), so I work those muscles every day.


 

1. Large Smile: Make the sound “EEEEEEEEEEEEEEEEEEEEEE” as you stretch your mouth muscles into a large smile. You should be able to feel throat muscles vibrate (stretch). Hold the smile until you have to take a breath. Perform ten of these each day. This exercise also works the lungs and throat.
2. Say ‘AH’: Make the sound “AAAAAHHHHHH” as you stretch (exaggerate) your jaw downward. This exercise also works the lungs and throat.
3. Wink: Exaggerate a wink with your left eye (really squeeze the eye closed) and hold for five seconds. Release and now exaggerate a wink with your right eye and again hold it for five seconds. Perform ten winks with each eye each day.
4. Push out the Cheeks: Expand your cheeks as if you are holding your breath. With your tongue, push out on your left cheek and then your right cheek. Perform this routine ten times.
5. Jaw Pushes: Place the palm of your hand against the bottom of your jaw. While pressing up with your palm, open your jaw as far as possible. Relax the jaw. Perform this routine ten times.
6. Big Frown: Close your eyes tight and frown. Raise your eyebrows as far as possible and hold for a count of ten. Perform ten of these.

Part II - Exercises to improve your quality of life

This is Part II of this series of exercises to improve the quality of your life as Kennedy’s Disease progresses causing lifestyle changes. Consider adding at least two-or-three of these exercises that you are comfortable with and practice them daily. As always, consult with your doctor before beginning any exercise program.

Throat and Tongue Muscles

Swallowing issues are something that many of us experience later in life. The thought of not being able to comfortably eat the foods I love bothers me.

And, choking is always a concern for me and my wife. For that reason I practice the following exercises daily … and they seem to really make a difference in my life.

1. Bite your Tongue: Bite down lightly on your tongue to hold it in position. Swallow ten times (or more) while holding the tongue between the teeth. Perform this exercise every day.
2. Pucker your Lips: Make the sound “OOOOOOOOOOOOOOOOOOO” as you pucker you lips. You should be able to feel your throat muscles vibrate (stretch). Continue until you have to take a breath. Perform ten of these each day.
3. Stick Out your Tongue: Stick out your tongue as far as it will go. Pull it back inside your mouth fast. Repeat as many times as you can and as quickly as you can.
4. Vibrate the Throat: Say “MAH-MAH-MAH-MAH” as quickly as you can. Be sure there is an M and an AH each time. Then say “LAH-LAH-LAH-LAH” as quickly and accurately as you can. Perform this routine five times alternating between the sounds. [Strengthens throat muscles]
5. Clear the Throat: Clear the throat (um-hum) several times a day by exaggerating the process and sound.

Exercises to improve your quality of life – Part I

As Kennedy’s Disease progresses, my exercise program has also had to change. Heavy weights and the use of a treadmill are no longer part of my routine. Lighter weight and more repetitive exercises have replaced several of the routines that I was performing in my 30s and 40s. When I perform standing exercises, I use a grab-bar or countertop to support me. All of my other exercises are performed while sitting down.

Even more interesting are the exercises that I have added over the last ten years to stimulate muscles and muscle groups that most people will never have to perform. Yet, these exercises become more important every year.

I have often been asked how I find the time to do all these exercises. Well, I add many of these exercises to my daily routines. For example, when I sit on the ‘throne’, I do a few of the breathing and swallowing exercises. When I let the dogs out in the morning and they are doing their business, I do some of the other face, swallowing and neck exercises. When I take the beagle for his walks, I do some of the other exercises. And, while watching the news or reading the paper, I do some more.

Over the next week or two I will publish five more posts giving examples of exercises you should consider adding to your daily exercise routines. Find at least two-or-three within each category that you are comfortable with and practice them daily. As always, consult with your doctor before beginning any exercise program.
 

Lungs and Diaphragm

As you become more sedentary, your breathing becomes shallower and the lungs and heart suffer. You might find yourself ‘huffing and puffing’ with the littlest exertion (bending over to tie your shoes, for example). Or, when you come down with a cold or the flu, you might find it difficult to clear your lungs of phlegm. For these reasons and many more, it is very important to practice breathing every day. Why practice something that you do naturally every day? Just because you are breathing, doesn’t mean you are getting enough oxygen into your blood and exercising your diaphragm.

1. Sniff: While sitting upright (straight back) breathe through the nose and exhale through the mouth. Take a long and strong sniff. Focus on the sniff – breathing into the abdomen (diaphragm) – so that you can feel your abdomen expand. Exhale … expelling all of the air using your diaphragm muscle to empty your lungs. Practice this exercise at least once a day for about five minutes. I recommend early in the day because your muscles and mind need the oxygen.
2. Cough: Use the sniff above to fill your lungs and then cough hard trying to expel everything from your lungs at once. Practice this for about two minutes, twice a day. This is a great exercise that will help bring up phlegm if you get a cold or pneumonia. It is also helpful in clearing out your throat should food become stuck.
3. Abdominal Breathing: When in bed, place your hands on your stomach. Spend a few minutes inhaling comfortably through your nose focusing on expanding the stomach (stretching the diaphragm as you fill the lungs with air). When the lungs are full, hold your breath for a few seconds. Slowly exhale the air through your mouth until your lungs feel empty. Breathe this way for five to ten minutes. This exercise is especially good in the evening and will help you relax.