Anecdotes
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Stiffness and slowness in thinking
“Our abilities can vary from one moment to the next. The severity of the problems can vary per hour, per day or per week. For example, one moment we can walk, the next moment we are literally standing still. One moment we take the initiative and the next moment we stare into space. Unfortunately, this is sometimes interpreted as unwillingness or a demand for attention. But that’s not the case. Do you see us doing something and a moment later we suddenly are unable? That’s how Parkinson’s works.”
Person with Parkinson’s
Apathy and depression
“A wife told me: ‘My husband always took the initiative in making decisions and he was very attentive, for instance by giving me little presents. That has completely disappeared. This makes me sad, and I miss it.”
Diana – Parkinson’s nurse
“An acquaintance with Parkinson’s was being treated by a psychiatrist for depression. In her case, the psychiatrist’s medication was counterproductive and addictive. A specialized psychologist determined that the symptoms were off-phase related. She used cognitive behavioral therapy, which helped. However, it was still quite a process to get off the medication.”
Paul – acquaintance
Sensory overload
“When my husband turned 50, our daughters and I organized a surprise party. Beforehand we were busy planning everything. At the party itself, I was already busy in my head tidying everything up, moving the furniture back and thinking about what I had to do tomorrow. As a result, I was unable to enjoy the moment and enjoy my husband and all the lovely people who were there.”
Jose – person with Parkinson’s
“My mother has become much less flexible. She has become very attached to a fixed daily rhythm. For example, when we visit in the evening, it can really upset her. She prefers it if we come for coffee in the morning or afternoon.”
Robert – son and informal caregiver
Slower movements
“When I was still working, I regularly received comments from colleagues such as: ‘Party’d hard, didn’t you?’ Or ‘Were you drinking again?’ And now, when I’m in a store, I hear comments from people behind me that I’m too slow or that I must be tipsy. I try really hard to hurry up packing my groceries, but that increases the stress and makes me even clumsier and slower. I was so done with that! I now wear a little sign on my jacket and when I get comments I point at it: “I am not drunk, I have Parkinson’s”. That stops them in their tracks.”
Jeannette – person with Parkinson’s
Stress
“The wife of one of my patients became irritated when her husband moved quite smoothly during his session with me, while he often fails to do so at home. She asked me: “Why can he move well here and not at home?” I heard a tone of anger in this question. I explained to her that her husband is always involved in multitasking at home, not a strong point for people with Parkinson’s. During his therapy session he can fully focus on movement, which is why it is easier for him.”
Carla – physiotherapist
“Stress is difficult to reduce and avoid. We often see a temporary increase in symptoms when people go on holiday and need to fly. It’s good when people discuss this with us. We can temporarily provide extra medication for these types of moments.”
Annemarie – physician assistant
Chewing and swallowing
“Sometimes I have difficulty swallowing medication. Ironically, it is precisely the levodopa/carbidopa tablets that cause this problem because they stick to my palate due to their powdery structure. And on top of that, they are also in a bottle with a child-proof cap. Very understandable, but difficult to open for someone with Parkinson’s.”
Gert – person with Parkinson’s
Bowels
“Chronic constipation or diarrhoea due to inflammation of the bowel. I can’t go or I must make good time to avoid being late. A stomach valve that no longer closes. Delayed gastric emptying. My stomach and intestines are causing me misery.
I find it worst when people make comments like: ‘You should eat whole wheat products, linseed, lukewarm water with lemon…’ etc. I passed that stage many years ago.”
Janneke – person with Parkinson’s
Communication
“Word-finding problems… I usually find my way around it. I’ll say: ‘I’ll just grab the cloth’, when I actually meant the kitchen towel. Or I’ll describe: ‘The brown treat, my favourite.’ Meaning chocolate. It’s annoying, but still manageable.
And although talking is my job – I have been teaching all my adult life – I notice how I start to stutter and stammer more often. I recently had a 3-second blackout, staring into the distance. That is a long time, when participants are listening to you. I could, for the life of me, not find the word ‘windowsill’. I ended up describing it.”
Monique – person with Parkinson’s
“The standard greeting in the Netherlands is: “How are you?” and the standard answer: “Fine.” I now have great difficulty saying “fine”, but I don’t want to complain to everyone…”
Jan – person with Parkinson’s
Fatigue
“As the day progresses, around five or six o’clock, the symptoms become worse. Typing messages on WhatsApp, making phone calls, going somewhere, is no longer possible or becomes very difficult. Therefore, I try to plan as much as possible in the middle of the morning. Because wobbling in a dentist’s chair or at the hairdresser’s is really not pleasant, even if the other person tells me not to worry. Yes, I would probably say that too, but yet, I do worry.”
Terry – person with Parkinson’s
Your anecdote on this page?
To give the reader an idea of what we as a person with Parkinson’s or as a caregiver encounter, the book contains anecdotes. You can find some of them on this page. If you would like to add your own anecdote to this, I would like to invite you to send it to monique@parkinsonbasics.com. I may put your anecdote on this page.
