God bless Caregivers

My wonderful wife has been dealing with Kennedy’s Disease for forty years. When we married, neither of us had a clue what life would be like 20, 30 or 40 years down the road. We never imagined Kennedy’s Disease would become a major part of our life. We were two nature lovers that enjoyed the great outdoors and ranked hiking in the forest or mountains above most everything else. Life was good and it was fairly easy.

Thankfully, she has grown into one efficient caregiver.

Early on, she tried to do too much to help and my ego didn’t appreciate her over-attentiveness. During the middle years, she had to bite her tongue many times when I tried something I was no longer capable of doing—often ending up in a minor or more serious injury. When I fractured both bones in my left leg, she had to put her entire life on hold for ninety days because I couldn’t even transfer without help.

Like me, her role has changed and evolved depending upon my capabilities and attitude. There were times I thought she might want to throw in the towel, but she never did—thankfully.

What amazes me is how efficient and subtle she is. I’ll come into the kitchen in the morning and find a bowl and silverware on the counter. I open the refrigerator and notice she has cooked up a container of noodles or cut up a salad with all the fix’ns. I open the drawer in the bathroom and find a new box of Breathe Right strips. You get the idea. Somehow, almost magically, things are done and items show up to make my life easier.

Just as important, she is ready to give me a good kick in the butt when I need one. I know this news might come as a surprise to you, but I am not always the easiest person to live with. J

So, if I haven’t said it enough today, thank you for being there. Thank you for your patience and support. Thank you for your strength. Most of all, thank you for your love. I am blessed to have you in my life.

Photo:  http://caregiverscomfort.com/

One Million Page Views!

On August 8, 2009, I published my first blog post. In it, I came out of the closet and announced to ‘the world’, or at least to the fifteen initial readers, that I am willing to talk about Kennedy’s Disease (SBMA). I admitted I was a ‘rare bird’ and there are thousands of others in this world that are members of this family—many who are undiagnosed or misdiagnosed. When I wrote the article, I never considered thousands of people would visit my blog. It was meant to be a vehicle for me to be more open about this condition I live with every day.

My wife tells me that if something needs a one or two sentence answer, I can find a way to write an entire story on it. She’s right. I have always had the gift of gab. She calls it a curse.

When the blog hit a thousand page views and had dozens of comments, my head was swimming. The first hundred thousand page views seemed to take forever, but when it happened, I was flying high. Nothing could be better.

Seventy-six months and 725 articles later, another major milestone was achieved—one million page views. Never in my wildest dreams did I ever consider it a possibility.

According to Google Analytics, the blog averages 15-17,000 page views every month from readers around the world. And, I continue to receive 2-3 comments or emails every day–many of which require an answer.

To all who have supported my efforts to make Kennedy’s Disease something to talk about, I thank you. You have blessed my life in many ways. Thank you also for forgiving my spelling and grammar errors. By reading my posts, you told me the message meant more than the mistakes.    

Below is an excerpt from the original post. If you want to read the entire post, follow the link.

Okay, I admit it …

“I have Kennedy’s Disease. There, I said it! Whew ... That wasn't so hard.

Kennedy's Disease is an X-linked, adult onset, progressive muscle disorder. I often refer to it as the poor man’s version of ALS. Kennedy’s Disease does not show up until later in life and it gradually erodes your strength by killing off the muscles and motor neurons in your body. Doctors classify it as rare disorder and estimate that 1-in-40,000 men have it. There is no treatment or cure for the disease. Living with the disease reminds me of the paradigm, “Is it more difficult to face life being blind from birth or to lose your sight later in life?” I realize that neither are good options, but is one worse than the other? Is it more difficult to lose something that you had or never to have experienced it in the first place? Realistically, what does it matter? You are still blind ... or, in my case, physically handicapped.

Several people have asked why Kennedy’s Disease is called a “disease” when it is actually a defect in our DNA. When I looked up the word “disease” in the dictionary, it provided a clearer understanding. A disease is “an impairment of health or a condition of abnormal functioning.” Well, that explanation does fit pretty well. Kennedy’s Disease is a condition of abnormal functioning of the androgen receptors that fire the motor neurons. I still like the scientific name of Spinal Bulbar Muscular Atrophy. Now that is descriptive and it does not sound like something contagious. Does my being bothered by the word “disease” just show an increased level of frustration? Why should it matter what it is called? All I know is that I am still a “man,” but I no longer feel manly. I feel emasculated because something was stolen from me that I prize. …”

Happy Holidays

I will be traveling for Christmas again this year and will not be posting any articles for the next few days.

I have much to be thankful for this year including your support over the last three years of this little venture.  This blog has become bigger than I expected.  Your comments have been meaningful and helpful.

May you and yours have a safe,  healthy and happy holiday season shared with family and friends.

Merry Christmas and Happy Holidays