[Linda Skon]

I’m thinking both about downsizing/ moving in the future and also about remodeling our current house for eventual resale. The $64,000 question is how to predict when we will no longer be able (physically and mentally) to empty a house we’ve lived in since the 1980’s without prematurely giving up the benefits of a paid-off single family residence. The second question is how to prepare for an unexpected crisis that requires us to move.

Unfortunately, my husband and I have had the experience of caring for my father, my mother, and my stepfather in their final years, which included moving them long after they should have moved and cleaning, repairing, and selling their houses. And arranging for their care in assisted living facilities. I do not want to burden my children to the extent I can avoid it.

I am 71 with PD. My husband is 74. We have a one-story house with remodeled bathrooms. We are gradually updating indoors and outdoors. We are making progress on clearing out closets. What we need is a crystal ball.

[Linda Skon]

Thank you all for sharing your experiences. Mine might be somewhat different, but hearing from you helps me remember I am not going crazy. It is the disease or the medication and will pass soon.

[Linda Skon]

I am 71, was diagnosed with PD 3.5 years ago, and had many non-motor symptoms for years before that. My mother died in 2004 from PD, and I thought I knew a lot about PD from her lengthy experience. I was so wrong!

But I did learn that she would cry every evening, which she attributed to her daytime sinemet wearing off, and very stressful events interfered with the effectiveness of sinemet for her. She learned to predict her moods and to time her meds so she could enjoy lunch with friends. She learned to redirect her thoughts from tragic events (such as my brother’s suicide) to focusing on how she could help (such as his children) despite her limitations. She still cried every night, but it helped to know it would pass. Although my experience is different, it has helped me to be aware that my fluctuating emotions are influenced, and perhaps caused, by my fluctuating dopamine levels.

For example, at times I get anxious about committing to a future event because I don’t know how I will feel or how well I will function then. I worry about things that are very likely not to happen (like a possible car accident). I can have a very dark perspective on the future. But I also have periods of being unrealistic and overly optimistic during which I make plans I can’t complete. I have warned my family that my temperature fluctuations and fatigue can make me very irritable. I used to like change, but now I want predictable routines.

Sometimes I have told my husband I cannot discuss a decision because I am feeling too anxious to think about it. If the decision is minor, I tell him to just choose something. If it is major, we wait till I can think about it without panic or frustration.

Everyone agrees that PD affects each person differently, but I haven’t found much explanation re how PD causes psychological or cognitive effects. I can tell you, though, I function much better when I acknowledge that I am getting upset or stressed and remember that the conflict is not personal. Perhaps you can avoid “corrosive” and “toxic” harm to your relationship by accepting that keeping your husband’s dopamine level high enough to relieve his motor symptoms requires tolerating his periods of cognitive impairment (similar to that caused by cocaine). Even better would be adjusting his meds to smooth out the ups and downs if possible.

[Linda Skon]

John and Debbie, I am sorry your friends and family have treated you this way. Not understanding another’s limitations is no excuse for being rude. I do have some ideas though about why people don’t understand those of us with PD.  Even if you have a noticeable tremor or shuffle, they don’t know or forget that you might have trouble adjusting to temperatures (I am too hot or too cold most of the time) and/or have non-motor issues (like my anxiety). I can keep up with my active toddler grandson for a period, and then I feel like collapsing from fatigue but my husband and daughter can’t tell unless I tell them. My closest friend has said that I appear “completely normal” and she forgets that I have PD. Almost daily I say to myself, “Now I understand why my mother with many years of PD was so grouchy!” I hope you find more supportive friends, but remember you need to tell them what you experience because they can’t understand unless you do.

[Linda Skon]

My father’s mother had PD (“shaking palsy” back then) and died in the late 1950’s from pneumonia after falling in a nursing home. When my mother was diagnosed with PD in the 1980’s, we often heard that you might die “with” PD but no one dies “from” PD.  That certainly was not true for my mom who died in 2004 after about five days of no food or liquid. For more than 25 years, she did everything recommended, took multiple meds, attended a monthly PD support group, saw her neuro every 3 months, maintained strong relationships with family and friends, danced with a broom during ON times, and pulled weeds in her garden even when she had to crawl wearing knee pads because she couldn’t push her wheelchair up a grassy hill. About six weeks before she died, she suddenly developed severe dementia with hallucinations. So, it was not surprising to me to be diagnosed with PD myself in 2019 (after several years in denial). My symptoms remind me daily of my mom, and although I still feel grief, more often I feel admiration and long-overdue empathy.

[Linda Skon]

Hi Rob,

Thank you for providing the link to the Mayo Clinic doctor’s article. It explained and summarized so much of what my movement disorder neurologist has told me. It also is very consistent with my experience and my mother’s experience with PD and PD meds.