A Caregivers Perspective

I read the following article (Chew Chor Meng's wife: His disease a blessing in disguise) with interest.  In the United States, we do not hear of any celebrities that have Kennedy’s Disease.  Chew Chor Meng is a celebrity in much of Asia and the announcement that he had Spinal Bulbar Muscular Atrophy a few years ago was news that hit most of the major newspapers and magazines over there.  Occasionally, I would see a follow-up article on his life and condition.

This article in AsiaOne Women came at the disease and Chew’s disabilities from the perspective of the caregiver.  When something like this happens, what so often we find out about ourselves is that after the initial shock, life goes on.  It is different, and it will never be the same, but life does go on.  And, just as important, the role of a spouse takes on a new role. 

The caregiver role is a difficult one


Not only must she continue to be the mother and supportive spouse, the caregiver must now wear a dozen more hats. And most of these new responsibilities have no training course or handbook.  It is most often “OJT” (on the job training).  Faith and strength of character become even more important at times like this.

And, believe me when I say that men with Kennedy’s Disease aren’t the easiest people in the world to live with.  Men, if you haven’t done so in the last few minutes, take a moment to thank your spouse or significant other for all that they do and for all that they are.  We are truly blessed and we don’t show our gratitude often enough.

Tis the season ...

I just received a call from a friend. He had a triple bypass and a stent implanted a week ago. He now has three weeks of rehab before he can go home. From the sounds of it, he is fortunate to be alive.  

His call reminded me of how we can become caught up in gift giving, decorating, parties, and the far too often stress associated with these events, and forget about what is truly important.

Why does it take something like the above incident happening to a family member, or friend, to force us to take a step back and examine our priorities? Health and happiness, mixed in with a lot of love, has to be the greatest gifts we could ever give and receive.  

From our house to yours,

Oh Yeah!

My annual wellness checkup went well. Heart, lungs, blood pressure, pulse rate, cholesterol, etc. were all very good. Everything compares well, and in some cases better, to the last few years. My doctor, who proclaims he my cheerleader, commented that I shouldn’t change what I am doing because it is working. He feels my daily exercise program continues to pay dividends. Of course, I added this milestone to my Gratitude Journal.

Of course, seeing the waiting room of the doctor’s office filled with people, many coughing or sneezing, doesn’t give someone ‘healthy’ a vote of confidence. The flu this year has affected so many.  Some offices and schools have closed in our area. My nurse said she has never it seen it this bad this early in the season.  Of course, I was trying to be extra cautious.

I added something to my journal this morning that I never thought would happen again. I filled up my car this morning and the gas only cost $1.93 a gallon. This is a real gift for those traveling this coming week. My wife and I were trying to remember the last time gas was this cheap. I Googled it and it was the summer of 2008 and before that the spring of 2005.  I thought it had been longer.

Happy Holidays

It’s that time of year again

My annual doctor’s visit seems to come around a little quicker every year. Fortunately, I have an excellent doctor who listens well, discusses options, and allows me to help decide the best course of action should any be necessary. Of course, I always look forward to reviewing my blood panel analysis. 

Yesterday, I started my “what has happened over the last year” list. My health journal is the basis for this list. It is my observations and comparisons to one year ago. The list gives us an opportunity to discuss if these issues are related to Kennedy’s Disease, aging, another health issue, or a combination of any of these.

This year’s list is interesting and I thought I would share a few items. As usual, there is some good mixed in with the bad. 

A.     Noticeable loss of strength:

·         Arms, shoulders, hand and fingers (More than normal over the last few years)

·         Nasal passage muscles (I am much more nasally sounding)

B.     Little or no difference from last year:

·         Leg strength (Quads, knee, calf, ankle and hip)

·         Neuropathy in the feet (Doesn’t appear to be any worse)

·         Choking and swallowing

C.     Having greater difficulties with:

·         Taking showers and drying myself afterward

·         Holding things like a glass of water, a plate, etc. (I am dropping more things these days)

·         Getting dressed and undressed (i.e., putting on socks and pants - especially when it is cold)

D.     Unchanged Routines:

·         I still exercise every day - odd days are 90-100 minutes of exercises and even days are 15-20 minutes

·         Every 3-4 hours each day I perform 36-50 standing leg lifts

E.      Changes in Routines:

·         I eat a large salad every day for lunch

·         I quit eating ice cream (After six decades of this daily addiction, I found out I don’t miss it)

·         Bread consumption is now a rarity (I don’t miss this either)

F.      Medications:

·         Dutasteride (Avodart) (I believe this has worked well for me)

I look forward to another stimulating conversation as we lay out my 2015 health care plan. And, hopefully, I won’t have to see him again until December of next year.

I am thankful for ...

This is the third and last blog post on the thankfulness meditation that helps a person realize what is important in his/her life. Today, I will focus on the last two questions.

4.      What advantages do I have, or have been given, in my life?  This can be a long list if you let your thoughts go. Some answers could include health insurance, Social Security or SSD, a pension, a good job, an education, and a strong support network. 

5.      Who are the backers in my life? 

• Who is always there for me? 
• Who always ‘has my back?’ 
• Who loves me, no matter what? 
• Whom can I always count on? 
• Who has helped me get to where I am today. 

For those of us with a disability,
this list can be substantial and include my caregiver.

(Wow, when I started this list, I was amazed how many names there were)

I hope this has been an interesting exercise. It always amazes me how we tend to become ‘stuck in the muck’ when something goes bad or in a different direction than expected. When that happens, the gratitude journal (notebook) is a wonderful resource. Just reading a few pages will help redirect your thoughts.

Gratitude is the best attitude

From my house to yours …
peace–love–health –happiness today and always

Happy Thanksgiving