My Companions

For those who share this same journey, you know how easy it is to become lost in the grungy shadowy alleyways of daily life. Fortunately, my three companions are with me every day to help keep me focused and from becoming sucked into the world known as “Kennedy’s Disease”. They provide comfort when I need it, a pick-me-up when I am down, and a reminder of all that is good in my life.

These three companions have been with me through thick and thin times. They have never deserted me no matter how difficult the situation.

Who are these three? They are:

1. Exercise,
2. Meditation, and my
3. Gratitude Journal

For those of you who follow my journey, these companions are not new to you. In fact, I hope they have become your trusted friends also. These three are at the core of my daily life and help me maintain a positive mental attitude. I cannot imagine what my life would be like without them.

Exercise: It is ingrained into my daily routine. At the beginning of each day, I do 10 to 15 minutes of breathing and leg exercises. After breakfast on the even calendar month days, I perform another 75-95 minutes of exercises. And, every 3-to-4 hours during the day, I perform a couple of minutes of standing exercises to keep the blood oxygenated and circulating. It also keeps my brain sharp-don't ask my wife to confirm this). And, right before bed, I perform 5 minutes of neck and shoulder exercises.

Meditation: 20 minutes are set aside each day for meditation and contemplation. No matter how busy I am, I find a way to commune with the silent peaceful world that is and always will be. It is a great grounding tool.

Gratitude Journal: Several times a day I am given the opportunity to experience the good as well as the many blessings in my life. By notating these moments, I redirect and regenerate my thought process. It is difficult to wallow in the gutters of discontent when a light shines on all the beauty that surrounds me. 

Who are your companions? How do they help and support your journey?

[Photo by WhiteFire4114]

Bite your tongue!

Over the last couple of years I have started biting my tongue on occasion (about every 6-8 weeks). These bites are not like taking a nip out of the tip of your tongue. These bites are in the middle third of the tongue and when I bite into it there is a crunching sound and some excruciating pain. Most of the time I take a hunk of flesh out of the tongue and it bleeds a little.

When I checked with my neurologist about this problem, he said my jaw and tongue muscles are atrophying. My wife tells me I need to be more aware of my chewing habits. I did notice that many of these times I am chewing on a salad.

Since beginning to take Warfarin for my blood clot, my blood has thinned to a point where anything (a scratch or cut, for example) won’t stop bleeding unless pressure is applied. Well, when I bit my tongue last Wednesday, it would not stop bleeding. Pressure didn’t seem to help. Ice seemed to help a little. Finally, pressure with a tea bag finally worked. Two hours later, however, it broke open again. More ice, pressure and tea bags.

A week later the tongue is still swollen a little, but everything else seems back to normal. And, I am listening to my wife … like I always do. (Okay, my fingers are crossed)

Being someone who is normally pretty optimistic, very little gets me down for long. I seem to have a way of turning negative events into a learning experience and find something positive about it. But, this incident has me concerned. If it was a more serious wound, or internal bleeding (from a fall, for example, causing a serious sprain or broken bone), the situation might require immediate attention.

When I discussed this problem of biting my tongue with another KD’r about my age, he mentioned he is also having this problem. Now I am wondering if more people living with Kennedy’s Disease have this problem as their atrophy progresses. Please let me know if you are also experiencing this issue.