More Than Brain Fog: Overcoming Cognitive Issues in Parkinson’s
As one of my sister Bev’s caregivers and a former nurse, I try to educate family members and friends about Parkinson’s disease (PD) to increase awareness and understanding and advocate for my sister. Bev was diagnosed in 2017. She’s now 83 and has stage 3 PD.
I am especially interested in learning how to deal with Bev’s cognitive issues. Her son, her daughter, and I become impatient at times and struggle with these changes in her. Although Bev has balance, walking, hand tremor, and swallowing issues as well, it seems that her decline in memory is one of the most challenging issues for her and us.
According to the Parkinson’s Foundation, “Cognitive impairment is different from dementia, which is when cognitive impairments occur in more than one area of cognition, leading to more severe loss of intellectual abilities that interferes with daily, independent living. While approximately 50 percent of people with PD will experience some form of cognitive impairment, not all lead to a dementia diagnosis.”
People with Parkinson’s may experience different types of cognitive changes. This could be caused by several factors, such as a decrease in dopamine levels or abnormal protein deposits on the brain known as Lewy bodies. Some researchers believe that changes in the chemical messengers acetylcholine and norepinephrine may also be associated with memory loss in PD.
Bev’s neurologist orders a brain MRI and cognitive assessment tests about every six months to check her cognition and look for any changes in the amount of protein deposits present on her brain.
Bev is still able to carry out daily activities, including dressing, bathing, cooking, and baking, but she struggles with memory, concentration, and some tasks.
She says, “I am forgetful, have poor memory with names and numbers, and it is difficult to remember and focus on things. This is not only frustrating for me but for my family.”
I wanted to know how we as Bev’s family and caregivers could reduce the frustration for her and us in a manner that maintained her dignity.
To offer guidance on caring for someone with cognitive issues, author and caregiver Jo Huey shared “Ten Absolutes” for the Alzheimer’s Caregiving Institute. Following are several I have found helpful. I shared them with Bev’s daughter, who lives with her, and her son.
- Never shame, instead distract.
- Never lecture, instead reassure.
- Never say “remember,” instead reminisce.
- Never say “I told you,” instead repeat/regroup.
- Never say “you can’t,” instead do what they can.
I’ve made several suggestions about how Bev can manage her memory issues but am ultimately leaving the decision up to her.
Bev writes down her appointments and daily tasks in a notebook. She says, “After I feed Izzy [her dog] and Malachi [her cat] in the morning, I sit down, have a cup of coffee, and look at my notebook to see what I have to do for that day. I also put names and phone numbers in a separate part of the notebook.”
It helps Bev to have everything written down in one place.
The following tips have benefited Bev and reduced our stress as caregivers. It’s important to figure out what works best for each individual.
- Keep things in consistent, easily reachable places.
- Use a pill dispenser to ensure medication is taken on time. Bev sorts her medications into a container with morning, afternoon, and evening sections for each day.
- When the person is searching for a word, provide a cue, such as, “The word you are looking for probably begins with ‘D.'” This has been very helpful, and it doesn’t embarrass Bev.
- Don’t finish the person’s sentences. Bev usually needs more time to put her thoughts together. It is very tempting for us to finish what she is trying to say. We are learning lessons in patience!
- When presenting the person with a list of actions to take when making a decision, it’s helpful to write everything down. Usually, when I discuss something with Bev or provide her with information, we talk, and then I have her write it all out in a way she will understand.
- Ask questions to ensure the other person understands you. Bev’s thought process is slower because of PD, so we all need to check if she is following along and slow down our speech. She once told me, “You talk so fast, I can’t keep up with what you are telling me.” Lesson learned, but I am still working on this one!
It’s important for people with Parkinson’s to maintain their dignity and be the best person they can be while adjusting to and overcoming the cognitive issues that can occur with PD.
***
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.
About the Author
Carole Martin
My Husband of nearly 60 years (I was a child bride )!!! has this awful disease. Recently he had sepsis but thankfully has made a really good recovery from that one. Nobody has told me at what stage my Stewart is at, although his speech is slow and very quiet-he's also deaf .He has been very poorly for the past 20 years or so, and I am his main carer (I have COPD) so I'm not that good. He's an amputee he's had a heart and femeral bypass and also has two stents - why him, he's such a good man. Does anybody have any answers for me please - I would be so grateful for any information. Carole
Gary Waters
After I retired from Navy/ &t teaching, I did all my research on PD, plus followed the advice from the doctor, I came up with my own game plan: 1. I have a Samsung tablet and I put all kind of apps relating to making my brain work. Plus I have apps on games like video poker/ etc...It helps plus I change my food program. I eat food that is good for me and relate to slow down PD. Hope this helps and God Bless.
Christine de los Reyes
Very useful comments. Thanks!
Tempie Berry
I am a caregiver to a 73 year old woman who was diagnosed with PD almost 20 years ago. Her cognitive issues are by far the most troublesome for her. In fact, other than a slight tremor in her foot, she had no other symptoms for 17 years. She has had two falls since her diagnosis...both were due to blood pressure fluctuation. Those were the only two times she has had an MRI. The only cognitive assessment was done when she was being considered for DBS. Because of the results, it was determined that she wasn't a good candidate.
As full of good information as this article is, I can't get past the fact that Bev has MRI's done every six months. That is amazing...and good for her. My client's first MRI 18 years ago showed a 1.2 cm, densely calcified left convexity meningioma. After her fall three years ago, the MRI showed that it had grown to 2 cm. None of the four doctors that she's had since I've been with her, seem to be concerned about it. Her most recent neurologist told me that it's not in a part of her brain where it would cause an issue. She's left handed...doesn't that mean that there is a chance that her brain isn't configured the way most people's is? Should I start stomping my feet and insisting that someone pay attention to it/her?
Sorry.. I may have vented a bit. I'm frustrated but at the same time, I am very happy that there are wonderful care teams out there, like Bev's. . Thank you Jo, for the information and for being such a great example and sister.
Jo Gambosi
Thank you for your kind comments.Having the best team of healthcare professionals is important in managing PD. I hope that your individual seeks out the best available in her area.
Laurel Rokowski
Thank you for your comments and I read it out loud at a girls weekend and we all have family that have had or have dementia and I have early stage PD!!
Thanks for the encouragement!!
Laurel
Fay Sharlotte Mitchell
My first encounter with the neurologist began about 10 years ago and was all put down to depression.
5years ago I started to have problems with balance.
Had 2 bad falls suddenly backwards, the 2nd resulting in 4 broken ribs in my back, which led to a collapsed lung, pneumothorax and pneumonia.
I was then referred to a very good and kind neurologist.
I then had ever sort it test you could think of including5 MRI’s, electrical tests, referred to different specialists.
The neurologist was baffled and sent me to another hospital in Alicante which had a Dat scanner. This involved being injected with a radio active substance, waiting 2 hours for it to circulate, and then put in scanner, which slowly crept around my body.
Result Parkinson’s. Neither I or my family believed it.
The neurologist said he would put me on a small dose of dose of sinemet+ to see what would happen.
In 24 hours I was a different person. Doing things l hadn’t been able to do for years.
Unfortunately this neurologist left. It was some time before I saw another one. This one thankfully spoke English, and he did
a test on my brain, and listened to my experience after the small dose of Sinamet,then told me that I definitely had Parkinson’s. Big shock !!
I didn’t see anyone for a while, and when I did.
He was horrible. Didn’t look at me.Examine me, and communicated through an interpreter, as I live in Spain.
He put me on a regime of Sinemet and said he would see me in 2 months, as he was leaving.
I didn’t see him again as Covid reared it’s ugly head and all appointments were canceled.
I haven’t see any one since but being an ex nurse have done s have done more research on the subject and the side effects of medication. So now understand the nightmares, hallucinations and other weird happenings in my life.
I now several years on have noticed more symptoms creeping into my life. unsteady, cognitive problems, incontinence, brain fog and loss of strength.
I am77 this year so I am lucky to have reached this age before being affected unlike some sad stories I read about.
Susan Gunn
I found all of the above comments very informative and useful. I was diagnosed with PD in early 2020 but had symptoms for the prior year. My Neurologist had me take a Dat scanner which confirmed my diagnosis. I am lucky that my husband and I have our own business and I work as a V.P and Controller within our company. I do have difficulties with my hands and also have slowed up cognitive wise and sometimes loose my train of thought. . With regard to the comment made about apologizing for venting, don't stop as we all understand what each of us is going through. I only wish 'they' could find a cure or something to stop it from progressing. It's about time!
David Hooper
I had deep brain fog when I was 16 years old. It has taken me 30 plus years to be able to clear most of it. My brain fog appears to have been due to systemic yeast overgrowth--perhaps several different kinds. In consultation with his doctor, you may want to try a keto diet or other yeast friendly diet and see if it helps or not. One theory is that Parkinson’s is at least partially caused by the Malassezia yeast. In addition, PWP have a higher incident of some other yeast conditions like athletes’ feet and seborrheic dermatitis. This may indicate a weak immune system. I take D3 daily and it appears to have helped to boost my immune system and reduce my symptoms. Of course, check with his doctor. Oils like in avocados, mixed nuts and seeds can help provide the energy needed for memory. The Malassezia yeast can feed on some oils, but I’ve found Almonds works for me to help me think clearer. May be helpful.
kathy provorse
This disease is so very difficult to deal with. My husband is 79 and has all the symptoms stated as above. He does not have a neurologist that seems to care at all.
I am in the process of finding a movement disorder specialist in my area,but the wait list is very long. I am his wife and caregiver,which requires my care for him 24 hours.
Wish after all the years and research,a plan and cure would happen. We seem to be left behind.
God Bless each and everyone
MARTIN STEVENS
Hello, I'm 79 years old and was diagnosed with PD when I was 70 although now that I know the symptoms of the disease, I've had the disease at least 10 years prior. I was a pilot in the Air Force flying cargo jets worldwide. I had the ability to overcome some of the non-motor symptoms and completely was without tremor. I was diagnosed when I saw a Neurologist (she happen to be a movement disorder specialist working at a is an hours drive from my home. When I saw her, I reported a slight tremor in my right hand when I put down the spoon I was using to feed myself, I being somewhat of a hypochondriac suspected PD but was hoping it was something else. She asked me to go for a short walk as she observed me from behind. When I returned she told me that I had PD and prescribed Sinemet 25/100 3 times per day. She acted like it was just another diagnosis not telling e that this was the start of a new life for me. Luckily I already retired from the military so I didn't have to work. I started my homework about PD and my research brought me to one of the top hospitals in the country, Shands hospital in Gainesville, Florida. It was there that I met and was examined by a movement disorder doctor named Dr. Hess. I made an appointment to see him and 2 months later I received my first examination by his team and dr. Hess. He confirmed my diagnosis and prescribed Sinemet. There was little to comment about my symptoms other than no arm swing and a slight tremor of my right hand when eating. Fast forward 5 years, I now have almost every symptom of PD with the exception of a slight tremor. About 3 years ago during a visit with Hess, he recommended I think about getting Deep Brain Stimulation or (DBS) due to the fact that symptoms would be getting worse and cognitively I was in good shape (you need to meet a standard to qualify for DBS which I met at the time but he couldn't guarantee that in the future I would be able to meet that standard. I read about the pros and cons of DBS and decided that would be a way to delay the bad things that might await me in the future. There was a 2% chance of complications during the surgery but that seemed low enough to make it reasonable. Unfortunately, I was one of that 2% that suffered a small brain bleed during the procedure which resulted in a cognitive loss for about a year. Meanwhile, other symptoms of PD started to appear slowly mostly in the non-motor area. I was a bodybuilder prior to the onset of PD and have noticed that I have suffered a loss of strength which could be age-related, muscle coordination, and urinary incontinence. During all this time, I never was put on any other medicine other than Sinemet and had no side effects from drugs. Memory is ok, not great but ok. I'm thinking that when one gets PD, he or she gets the disease that is tailored to your biochemistry. What I wanted to mention is the availability of Dr. Hess by e-mail. I don't know if it's peculiar to him and his team members but his availability is noteworthy, since he's a4 hour drive from my home.
David Robinson
I attended a lot of Lunch and Learn meetings at Emory Brain Health Center in Atlanta. I’ve been diagnosed with Parkinson’s for about 6 years. What I learned there was Exercise isn’t the best thing for Parkinson’s, it’s the only thing. And exercise with cognitive emphasis is life changing. I don’t have, and haven’t seen any clinical evidence of this, but I’m sure there is some. I attend a PD boxing class three times a week, 90 minutes each. That’s probably the minimum for useful benefit. I took a similarly PD afflicted friend to my boxing class, and he declined to continue, because he wasn’t in the “mood”. So this is a plug for exercise if Parkinson’s is in your life, and specifically for PD boxing with its emphasis on cognitive ability. Just Do It. Mood isn’t a consideration, but quality of life sure is. I’m almost 80, and know it’s possible for everyone to do.