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Intimacy Can Be Challenging with Parkinson’s Disease

intimacy

Sherri Journeying Through

The other day, my husband told me he felt alone. Then he said he felt distanced. How could that be? We are together almost every day, 24/7. But being together and being together are very different, especially when it comes to having Parkinson’s disease.

This disease has many symptoms, of which tremor is the most prominent. Other symptoms are not often discussed, particularly depression. Another that I will discuss in this column is intimacy difficulty. 

Most people with Parkinson’s are aware that intimacy can be an issue for many reasons. One may be an unintentional lack of interest the person with PD may not even be aware of. Another may be pain or discomfort. Yet another may be the inability to “perform.” Any of these reasons can disrupt the relationship, sending messages of rejection or appearing to indicate the partner is undesirable and even unloved. 

First, let me say that, whether you’re the person with PD or the partner, you are not alone. I, too, struggle with this subject for many reasons. I can feel inadequate in many ways, but I didn’t realize I was inadvertently making my husband feel distanced and alone until the other day when we had a heart-to-heart talk.

According to the American Parkinson Disease Foundation, “From lack of sexual desire to low libido to difficulties with orgasmic functioning, this chronic, progressive, neurological disease can impair your sexuality in one way or the other.” The Michael J. Fox Foundation adds that “as many as 70 to 80 percent of those with PD experience sexual dysfunction.”

Dealing with bradykinesia, or slowness of movement, and rigidity can become an issue in a relationship. Symptoms such as tremors and dyskinesia also can contribute to dysfunction and leave one or both partners feeling inadequate.

This also plays out in everyday signs of affection such as hugging, kissing, or holding hands. The person with Parkinson’s can appear aloof to the need for affection and leave a partner feeling more distanced with each day. Before long, both are wondering why the other has stopped finding them attractive and don’t want to be with them sexually anymore. I can’t help but believe that the sad stories I have heard about spouses who have left their partners with Parkinson’s disease are more likely due to a lack of communication than just having the disease.

It’s hard to overcome feelings of inadequacy when they are kept bottled up and aren’t talked about. The first person to talk to about how you’re feeling is your partner or spouse. A frank and honest discussion about the effects of Parkinson’s on intimacy and how to overcome it in everyday life is critical. It might mean an intentional hug in the morning or time set aside only for conversation. (This does not include talking while watching the television.)

Speaking of television, the other day, I was watching a show and at the end, a man proposed to his girlfriend. Of course, she said yes — it was a Hallmark movie, after all. Then the guy said, “I hope the magic never fades.” 

None of us wants the magic to fade, especially if we have Parkinson’s. It’s taken so much already. We need to keep communicating with each other, no matter how hard it may be at times. It’s those times that bind us together more tightly, and the tighter we hold each other, the greater the magic will be. 

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Intimacy Can Be Challenging with Parkinson’s Disease appeared first on Parkinson’s News Today.

The Grouch and T.O.O.T.S.: Dealing with Irritability

irritability

Years ago when I was first diagnosed, my partner asked the neurologist, “Is there something we can do about his irritability?” The doctor responded, “I wish I had a dollar for every time a partner made this request.”

It seems this is a prevalent issue. In past columns I have addressed scenario looping breakdowns, exaggerated emotions, deep fatigue, bad days, and ugly days. All of these contribute to the occurrence of irritability. Add to this “off-periods,” which also increase irritability.

The grouch rears its growling snout, and to keep the relationship protected, T.O.O.T.S. is the necessary muzzle. T.O.O.T.S. stands for Time Out On The Spot. It means that you “time yourself out” — zip the lip and take a trip. Walk away and return when calmer moods prevail.

As a therapist and professor, I have lots of practice monitoring my internal emotive state and taking actions to prevent it from affecting my ability to help others. But with Parkinson’s, it became more difficult. The first time the grouch barked back to a student in class and “put her in her place,” it happened on one of those bad days that overlapped with high irritability. But it was a shock to me that it happened, and I went to the department chair to explain it. He shrugged it off.

I told my neurologist that it was as if the normal filters I use to screen my emotions were not working properly. The emotions just spilled out and this grouch took over. Now further along with the disease, not a day goes by when I don’t have to muzzle the grouch.

PD irritability can bring other exaggerated emotions. Every little thing becomes blown out of proportion. Example: I’ve asked my partner not to smoke in the house and even hung a no-smoking sign. (Yes, inside the house!) Yet, a cigarette still gets lit indoors prior to my partner walking outside. The smoke makes me nauseous and triggers the grouch.

How many little things occur in a relationship that are annoying? With the grouch, it is not like a-fly-in-the-room annoying, but more like someone stole-your-lunch-money annoying. Smelling smoke in the house after numerous reminders is sickening and close to infuriating. I put T.O.O.T.S. into action, calmed down, and later planted a gentle reminder — again. Doing it this way prevents an argument or fight and saves the quality of the relationship. Zip the lip — save the relationship.

Dealing with the irritable grouch not only requires T.O.O.T.S., but also the following

– The 1-to-10 rating system of how bad the day is, which can be a grouch warning.
– Exercise, which can decrease grouch problems.
– Realizing that deep fatigue, if not attended to, will increase grouch problems.
– Understanding that ruminating on something annoying makes it worse; the key is to find a way to move past it.
– Telling people what you want from them. If you wait for them to read your mind, you will be disappointed — and annoyed.

Stress, lack of sleep, not eating or hydrating properly, and disruptions in the daily routine all can act as triggers for the grouch. Self-monitoring all of this as a way of keeping the grouch muzzled is not something that happens with perfection. The grouch still barks at family and partner, but the rehab plan decreases the frequency.

Even more than that, the plan gives reassurance to those who love you that you are doing all you can. Zip the lip — save the relationship.

Does the grouch arrive at your home?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post The Grouch and T.O.O.T.S.: Dealing with Irritability appeared first on Parkinson’s News Today.