Living With Your Parents and Parkinson’s

Your Parkinson’s disease has you back under your parent’s roof.

You had no other option but that doesn’t mean you aren’t second-guessing your decision. It feels like you are a child again. Years of independence feel as though they have simply melted away. There is probably no aspect of PD more difficult than having to return “home” after spending many years away. However, this is not a moment of personal failure but one of necessity. Making it work may be challenging, but it can be done.

The greatest obstacle to successful transition back under your parents’ roof will be the natural tendency to fall into old behavior patterns. This applies to both you and your parents. After all, your interactions emerged and began to evolve the moment you drew your first breath. There is no one with whom you share a longer history or with whom you have the most deeply established relationship roles. Roles tend to define interactions and can be very resistant to modification even when circumstances change.

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It’s A Date

I have been asked by several readers to discuss the topic of dating and Parkinson’s disease. I think it is helpful to start by thinking back to when we all first began dating.

Most of us remember well the awkwardness and insecurity the dating process produced during our early adolescence. From the multiple doubts about the possibility the person will say no to the worries that there will be nothing to talk about, dating was an anxiety-provoking experience for many young men and women. It strikes me that Parkinson’s brings back many of those fears we all shared.

Many individuals who acquire PD early in life are single. They may have been enjoying exciting careers, experimenting with life, looking for the perfect relationship or emerging from the least perfect relationship imaginable. The sudden emergence of PD can make being alone particularly frightening. All of us manage stress better when we are supported by a loving partner. The need to find that support can be a powerful drive, one that can cause a person to lose sight of why we date.

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If you haven’t, then I would recommend you stop while you are ahead. Nothing breeds guilt, unhappiness and self-directed anger so much as a broken New Year’s resolution.

It is human nature to try to turn moments like a fresh year into an opportunity to improve our lives. When such moments occur during a time other than January 1, we more typically call them goals or aspirations. I don’t think it is necessary to change this perfectly good terminology into the looming and somewhat legalistic sounding New Year’s resolution (as in “Be It RESOLVED…).

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PD and the Holidays

Ah, the Holidays!

A time for families and friends to come together in the spirit of the season. A time to relive old memories and build new ones. A time of warmth and joy. A time for grand feasts and what were once called “Kodak moments.” A time to tap into personal and longstanding cultural traditions for Christmas, Hanukkah, Kwanzaa. Remarkable, magic times! Solemn, momentous times.

And for young men and women with PD, a time of stress.

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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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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.


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