Problems with chewing and swallowing?

Benjamin Franklin wrote, “An ounce of prevention is worth a pound of cure.” Much of my life living with Kennedy’s Disease is focused on preventing or slowing the inevitable.

One area of the body that becomes particularly troublesome for those of us with Kennedy's Disease is often the most neglected. As the disease progresses, the face and throat muscles also weaken. Many of us begin to experience problems with swallowing, choking, dry-drowning (Laryngospasm), facial muscle wasting, jaw weakness, etc.

Some exercises will help maintain the throat, tongue and facial muscles and possibly delay or moderate several of the issues mentioned above. I practice many of these exercises several times a week (shown with an asterisk). They do help — especially with the chewing and choking issues. Try these exercises for a month and see if they help.

Stick Out 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. At first, you might find this exercise extremely difficult. Over time, it will become easier. [Strengthens throat muscles]

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). Perform this routine ten times. [Strengthens throat and facial muscles]

Pucker your Lips:* Make the sound "OOOOOOOOOOOOOOOOOOO" as you pucker you lips. You should once again be able to feel your throat muscles vibrate (stretch). Perform this routine ten times. [Strengthens throat and facial muscles]

Stretch the Tongue: Open your mouth and stick out your tongue as far as possible. Be sure your tongue comes straight out of your mouth and does not go off the side. Hold, relax and repeat several times. Work toward sticking your tongue out farther each day, but still pointing straight ahead. Perform this routine ten times. [Strengthens tongue muscles]

Tongue Darts:* Stick your tongue out as far as you can and pull it back fast. Repeat ten times as quickly as you can. [Strengthens tongue muscles]

Circle the Mouth: Swab all your teeth and gums with your tongue. First, the inside of your teeth and then the outside. Perform this routine ten times. [Strengthens tongue muscles]

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]

Hard Coughs:* Cough hard several times each day. [Strengthens the lungs and throat muscles]

Clear the Throat:* Clear the throat (um-hum) several times a day. [Strengthens throat muscles]

Big Yawn:* Take a deep breath and open the mouth wide as if you were yawning. With the mouth open wide, move the jaw from side to side. Perform this routine ten times. [Strengthens facial muscles]

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. [Strengthens jaw muscles]

If you have other face, tongue, jaw and throat exercises that work for you, please let me know.

JAWS – Not the movie

Life is a journey of self-discovery. We might have some limiting issues, but we can usually get around many of them with mobility aids, a regular exercise program, and maintaining a positive attitude.

The other day I was asked a question about jaw problems and Kennedy’s Disease..

“I wonder if you know whether other KD men have experienced problems with jaw alignment? My cousin, who also has Kennedy’s Disease, is having great difficulty eating. He has found it necessary to eat mainly smoothies, since he cannot chew very well.

I suggested he discuss it with his doctors and make sure it was not something else. We tend to blame too much on our condition in part because we can have such different acute symptoms.”

Yes, I have that problem. For me, it started many years ago. It can be very painful and often the only way you can reduce the pain is to push the lower jaw back into its joint. About 15 years ago the pain was bad enough that I had to support my jaw with my palm while eating.

I began an exercise program to help restore the jaw muscle’s strength and it has helped immensely. Nevertheless, it hasn't eliminated the problem entirely.

Something else I found that helps is supporting my jaw when sleeping.

Today, I eat steak, nuts, most anything, including bagels. However, I take smaller bites and chew with an awareness of what I am eating.

“Are those exercises part of the ones you have posted on the KD site or in your recent exercise blogs?”
 
Yes, some of them are. I do so many exercises these days that I have to think about what is posted and in the guides.

Does he have to hold his jaw in place so it doesn't pop out?

“Yes, even when he is talking.”
 
Well, everyone is different, and what might help me might not help your cousin. Have him try the following to see if it eases some of the problems:
1. Being aware of when it might happen.
2. Using a pillow for support of the jaw at night.
3. Not eating hard, difficult to chew, foods like bagels, for example.
4. Moving the jaw back and forth exercises the muscles holding it in place.
5. Performing exaggerated winks, and holding them for a count of 3, before moving to the other eye. I do ten winks of each eye at a time, several times a day.

A physical therapist is best qualified to help with this problem. Your cousin’s doctor can recommend one.

How about you? Have you experienced problems with your jaw muscles? What has worked for you to help minimize the issues of dealing with this problem?