Blog

The Power of Caregiving?

November is National Caregiver’s Month according to the National Family Caregiver’s Association. These individuals certainly deserve our attention and accolades. It is noteworthy, however, that the term “caregiver” often rankles individuals with young-onset PD. I don’t think this should be surprising.

Those who know me or have followed my blogs are aware that I do not like the term “caregiver,” particularly as applied to a spouse or partner who is simply following through on a relationship vow made when both were healthy. For them, “sickness and health” was a meaningful obligation. These are men and women of character who stand by their partner through the best of times and the worst of times. They do it without getting paid, often incurring a significant economic hardship due to a decreased presence in the workforce.

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Parkinson's and the Winds of Heaven

You shall be together when white wings of death scatter your days.
Aye, you shall be together even in the silent memory of God.
But let there be spaces in your togetherness,
And let the winds of heavens dance between you.
- Kahlil Gibran’s

Recently, my work with families touched by Parkinson’s has caused me think of a verse about marriage in Kahlil Gibran’s classic, The Prophet. Much of the stress and difficulty arising in the PD relationships can be traced to forgetting to “let the winds of heaven dance between you” (the partners). This failure is what therapists call emotional dependence.

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Libido Limbo - How Low Can You Go?

Hey, let’s do the limbo rock
Limbo lower now
Limbo lower now
How low can you go
- Lyrics Limbo Rock

It is always nice to open a blog with the wisdom of the great philosopher, Chubby Checker. I have always loved to watch limbo dancers. It is fascinating to see the individual differences in abilities to wriggle the body under the suspended bar without knocking it over. One of my favorite limbo performers was able to slide under a flaming bar set atop two longneck beer bottles. It is a feat I could not even imagine myself doing. Following that limbo would be an exercise in frustration.

In addition to its irresistible alliterative value, the limbo provides a nice metaphor for libido. There are tremendous individual differences among individuals when it comes to limbo, some very high and some very low. Sexual desire can be described in a similar manner.

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PD or Not, Libido Will Change

Although many people with PD struggle with decreased libido (sexual desire), it is easy to forget that many people who don’t have PD also struggle in this area. In fact, everybody’s libido can be fragile if the circumstances are right.

A feeling of sexual desire is a crucial aspect of sexuality. This means that sexuality itself can be quite fragile. The reasons for this are too numerous to discuss in one blog entry. I therefore would like to tackle this important subject over the course of several entries by asking: What influences libido?

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Do Ya Think I’m Sexy?

“I have Parkinson's. Who could possibly find me sexy?”

There is no question PD can make the physical act of sex difficult. If one makes being sexy dependent upon consummated intercourse then it would be very difficult to see oneself as sexy.

If sexuality is more than a physical act, then the question is misplaced altogether. It is not others who doubt an individual’s sexiness. Rather, it is the person asking the question.

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A Burden?

While at the recent 6th Annual Living Well retreat sponsored by the Parkinson Foundation of Western Pennsylvania, I heard a familiar refrain during informal discussions with attendees:

“I am a burden to my family.”

My Mac’s dictionary defines “burden” as a heavy load. There is also a more figurative definition for the word, one describing duty or misfortune that causes hardship, anxiety, or grief. It is helpful to look at both definitions.

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Fear, Divorce & Parkinson's Disease

"My marriage is hell but it is better than being on my own. What will I do if I need someone to look after me when my PD gets worse?”

It is a question I am asked a lot by men and women with early PD. The answer, of course, is that I don’t have an answer. However, it is a question that is important to explore.

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Wisdom

I once heard a motivational speaker talk about meeting a one-legged ice-skater. This individual had been an avid skater but lost a leg in an accident. He struggled on the ice everyday, learning to do what he dearly loved in a new way. When he spoke to the person relating this story, this man said that he wished for nothing less than to become the best one-legged skater possible. His story illustrates a profound application of what has been called the Serenity prayer:

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NOTE: Dr. Paul Short is neither an agent nor employee of ADPA or any of its affiliate organizations. The views expressed in this blog are the opinions of Dr. Short and do not represent the opinions or endorsement of APDA. The information contained on this site is for your general information only and is not intended as, or a substitution for, medical advice. You should also be aware that the information on this site may not reflect the most current medical developments, nor is it provided in the course of a physician - patient relationship. You should always consult your physician or other qualified healthcare provider or expert with any questions or concerns you may have regarding a health or medical condition. You should never disregard professional medical advice, or delay in seeking it, because of something you have read on this site.

About the Author

Paul Short, PhD

Dr. Paul Short, The Parkinson's Coach, provides Internet-based coaching to individuals and famlies challenged by Parkinson's disease and helps them develop personalized plans for coping with the disease.