What I Learned While Visiting My Sister, Who Has Parkinson’s Disease

Jo Gambosi avatar

by Jo Gambosi |

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My sister, Bev, has stage 3 Parkinson’s disease (PD), which causes her to experience balance and short-term memory issues, along with hand tremors. While visiting her in Ohio last month, I noticed Bev’s PD had progressed. She was having more difficulty with balance, memory, and chronic fatigue, and I definitely noticed her decreasing cognitive function.

But another significant change I observed in Bev, 84, was her increased irritability with me and others. She also seemed to be anxious about almost everything.

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After much thought and prayer, I decided to ask Bev if we could have an honest and open discussion about how she was feeling in regards to both PD and her life in general. I tried to communicate compassionately that I had noticed some changes in her mood.

Mood changes and increased anxiety are not uncommon in PD and can result from either psychological or biological factors. According to Rachel Dolhun, MD, the vice president of medical communications at the Michael J. Fox Foundation for Parkinson’s Research, “Parkinson’s decreases brain chemicals that impact mood, which means anxiety and depression are rooted in a biological basis.”

During my discussion with Bev, I focused on her irritability, anxiety, and balance issues.

Bev said, “I know that people care about me and are just trying to help when they make suggestions, but I am tired of hearing them repeatedly. I sometimes just want to be left alone. I can still make my own decisions.” My sister has always had a stubborn streak!

I told Bev that I couldn’t fully understand her frustration toward PD and her cognitive changes, but that I respected and loved her. I promised to suggest to other family members and friends that we allow her to be as independent as possible, let her make her own decisions when reasonable, and avoid repeating our recommendations to her. Lesson one noted!

While I was in town, Bev was surrounded by far more activity and people than she’s used to. I’d thought getting her out of the house to go to a restaurant for lunch or visit a local friend might help lighten her mood, but it was actually overwhelming for her. A second lesson learned.

I also asked Bev if I could contact her neurologist about possibly trying a different medication for her balance issues and tremors. She agreed, and her doctor prescribed something else: carbidopa/levodopa, the generic for Sinemet.

After I returned home to Arizona, I called and asked how she was doing with the different PD medication. Bev said, “At first it made me really sleepy, but now I think it’s helping my tremors and balance.”

Thanks, sis, for sharing your insight and helping me better understand your experience.


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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

jean mellano avatar

jean mellano

HI Jo, I can also say, as my PD has progressed, my depression and anxiety are worsening as are my bradykinesia, balance and debilitating fatigue. In addition, if I plan more than one thing per day, i also feel totally overwhelmed. I was diagnosed in 2015, so I guess I have been lucky it took this long to get to this point. I was talking to my fellow boxers in Rock Steady Boxing and we all agreed never to ask each other how we are doing. That is a loaded question to ask a person with PD. I have friends, and I know they really care about me, asks me on a regular basis how I am doing. Just about all the time now, I feel horrible and knowing it is only going to get worse as time goes on doeesn't makes me feel any better. Bev is lucky to have such a caring, perceptive sister like yourself.

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jean mellano avatar

jean mellano

Hi again, I forget to ask , what was Bev taking before she switched to C/L? I understand if you prefere not to share this information.

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Lloyd Ford avatar

Lloyd Ford

I’m quite surprised that Bev wasn’t taking Sinemet. Perhaps a dopamine agonist like Mirapex, at least?

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Michele Mohrmann avatar

Michele Mohrmann

Hi Jo and Jean ~ Thank you both for sharing your experiences. I was diagnosed in 2016 and am experiencing several of the symptoms you both described. I am a Christian and believe the Lord is providing for me. I do not suffer from depression or any pronounced cognitive changes. I do take supplements, though, and feel that they are helpful in maintaining a more calm and upbeat demeanor. One of the supplements is N-Acetyl-L-Cysteine 600 mg, one capsule twice a day. Another is Lithium Orotate 120 mg, one tablet once before going to bed. Another supplement I take to help me sleep is Ashwaganda Extra Strength 3000mg, 2 capsules before bed. I order the N-Acetyl from Life Extension, and the others I order from Amazon. As for people asking me how I am doing (this is constant when I am in church), I just tell people that I am too blessed to be stressed. It works!

I pray that I have been of some assistance to you both. Blessings ~ Michele

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Wanda Kim avatar

Wanda Kim

Dear Jo,
I reacted to your post in two different capacities: first, as the daughter of a PD patient (Dad was diagnosed in the mid 1990s); and secondly, as a PD patient myself (diagnosed in 2012). My father‘s PD had fairly light symptoms until about 15 years ago. As his tremors and balance worsened, so too did his mood swings. It was very hard for the family to handle the mood swings and we put it down to an emotional response to his worsening physical symptoms. The same trio of events began to happen to me in the last 2 years. My angry outbursts were always directed at those closest to me (my husband) and the triggers were almost always when I felt that my autonomy or ability to live my life as I wished were being challenged. Despite having the example of my father‘s behaviour, it took a while for me to see that the anger was not necessarily a rational response. It took me even longer to accept that my behaviour was most likely part of my PD symptoms. The anger always came when my symptoms were worse.

I spoke to my husband and asked that when I lashed out in anger, please try to just listen and not react. Don‘t react to the anger or the words but just let me be. This was a big ask but it worked. He gave me the space to calm down and regain equilibrium.

The first thing I do each morning is to ask myself how I am. If I feel out of kilter - physically, emotionally, mentally - I try to do something that can restore a balance within myself. It doesn‘t always work but at least now I feel like I can recognise when I might fly off the handle and try to take positive steps to feel better. That in itself is empowering.

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Jean mellano avatar

Jean mellano

Thank you Michele. Be careful with the lithium,
. Even though the dose was very low, my endocrinologist told me to stop taking it as it could be elevating my PTHLevels in my blood which along with high calcium levels could be a sign of hyperparathyroidism

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