Parkinson's Disease Dementia Timeline

By Louise Holland

The experiences described in this book attempt to fill a gap in the information available to the Parkinson's disease / dementia patient's caregiver. It is an account of a single patient and the progress, both physical and cognitive, which might serve as a guide to those about to embark on this journey. It follows the changes in one patient, from the first sign of illogic through the increasing frequency of evidence of cognitive inability. Normal routine was maintained throughout the decline, but physical and mental changes made it necessary to adapt new strategies. This synopsis points out these changes, both minor and significant, and shows how the caregiver coped. The combination of illogic with the increasing inability to move or speak presents a challenge to the Parkinson's disease / dementia patient's caregiver. The "progress of the disease" frequently cited by physicians was opaque. This account tries to shed light on how that progress is manifested.

• Language: English
• Publisher: Page Publishing, Inc.
• Release date: May 29, 2018
• ISBN: 9781642144857

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Parkinson's Disease Dementia Timeline

Louise Holland

Copyright © 2018 Louise Holland

All rights reserved

First Edition

Page Publishing, Inc

New York, NY

First originally published by Page Publishing, Inc 2018

ISBN 978-1-64214-484-0 (Paperback)

ISBN 978-1-64214-485-7 (Digital)

Printed in the United States of America

In writing this book, I hope to fill a gap in the information available to the Parkinson’s disease patient’s caregiver. Many publications tell the caregiver/nurse what the disease is and how the medical community handles the patient.

The role of the caregiver/nurse seems to be of secondary importance. The most frequent advice is do your own research and take care of yourself first.

This is good advice, but if one asks what to expect in the progress of the disease, the answer is usually each patient is different.

Support groups discuss various concerns, first of the initial symptoms like softness of the voice, difficulty with balance, tremor, low blood pressure, and when to take away the car keys. We are all curious about the causes of Parkinson’s, what medications work, and finding a good doctor. As the disease progresses, we become more interested in discussing the need for a lift chair, a walker, a scooter, or a wheelchair, then the change in personality, hallucinations, incontinence, constipation, and dementia. Finally, hospital, emergency, and estate planning, in-home care, respite care and facilities, and hospice concern us.

Through all of this, the caregiver/nurse is playing catch-up, dealing with symptoms after they occur, not knowing what to expect next, and trying to maintain a sense of equilibrium.

To paraphrase from the National Parkinson’s Foundation publication Caring and Coping, on page 78, it states: People who care for Parkinsons dementia patients provide an average of 14 hours of care daily, and had greater levels of physical and emotional strain that people caring for an Alzheimer’s patient.

What follows is an account of a single patient and the progress, both physical and cognitive, which might serve as a guide to those about to embark on this journey.

This record was started because I couldn’t believe what was happening. I wanted to be able to describe my PD sufferer’s actions and symptoms accurately so we could get help.

One medical professional asked if the patient was acting a bit loopy. Where is that definition in the Medicare code book?

Impaired Thinking and Dementia

Over time, more than 50 percent of persons with PD may experience some degree of impaired thinking. While the majority of people with PD will develop some degree of cognitive impairment, many will not progress to severe disability.

People with PD many experience difficulty with speed of mental processing; attention/concentration—losing train of thought; problem-solving, decision-making, multitasking, and planning; short-term memory; language production.

In most cases, the impaired thinking associated with PD is not Alzheimer’s disease, so the severity of the cognitive or thinking deficits and the effect of those deficits on day-to-day functioning are not as disabling.

Dementia in Parkinson’s disease (PD) occurs when the specific deficits in attention/concentration, problem-solving, and memory are severe enough to interfere with the person’s ability to function appropriately at work and/or in social situations. PD dementia is differentiated from other forms of dementia by additional distinguishing characteristics such as fluctuation of awareness and attention span, visual hallucinations, and altered spatial orientation. Fluctuating awareness refers to periods of mental clarity alternating with periods of confusion, distractibility, sleepiness, and psychosis (usual visual hallucinations).

Paraphrased from Parkinsons Medications, pages 28–29, Houghton, Hertig, Metz, Brandabur, National Parkinson Foundation.

Years One through Fourteen

Patient was diagnosed with Parkinson’s following his noticing a change in his balance. He was put on a small dose of Sinemet and continued his normal life. His doctors monitored his condition and increased the Sinemet dose gradually over the course of several years and tried other medications like reprinerol. There was no tremor, but a feeling of being on and off. He was able to work, travel, and exercise without hindrance.

He enrolled in medical trials, took Big and Loud voice therapy sessions, and participated in chair yoga and tai chi programs, all with the goal of maintaining his abilities.

About the tenth year, patient had three or four episodes of syncope, or nearly fainting from low blood pressure, but none at any other time.

In the fourteenth year, patient moved from New England to Florida, to a single-level open-plan house with wide hallways. Handrails were installed in the hallways.

In the fifteenth year, he joined a Parkinson’s support group in a joint program with the Alzheimer’s Association. The Parkinson’s patients’ programs included chair exercises, tai chi, Qigong, a vocal strengthening exercise called TrembleClefs, and exercises at an indoor saltwater pool provided by a local retirement and assisted living establishment.

Year Fifteen

The daily routine during this period was no different from that of the last ten years. Patient used a stationary bike and a rowing machine for exercise every day before shower and breakfast.

Normal activities at the beginning of this narrative included attending church, walking along the seashore daily, an exercise class twice a week and a singing class once a week at the Alzheimer’s/Parkinson’s Association facility, being board members of our homeowners’ association, visiting the local art museum occasionally, and going to movies. Patient wrote a monthly column for a magazine he used to manage.

The physical symptoms of Patient’s Parkinson’s started to be more noticeable.

Early in July, Patient started rolling over in bed, throwing his arms and legs around.

In August, Patient started falling and freezing on walks. At an exercise session at Silver Sneakers, Patient froze.

Actions taken: We engaged a physical therapist to help with balance, walking, and to improve strength.

In September, Patient froze when we were walking along the waterfront and couldn’t move. A kind woman gave us a lift to our car.

In October, Patient froze on a walk around the neighborhood and needed a lift in the car to get back home.

In early November, we were able to walk on the beach, but later in the month, Patient started falling a lot.

Also in November, Patient began the habit of taking a nap after breakfast.

Actions taken: In anticipation of further freezing, we purchased a wheelchair.

Cognition: Patient seemed to have no problem with thinking clearly enough to continue writing for publication.

However, in December, Patient and Caregiver had the following exchange:

Patient had made reservations to go to Europe in December, but decided it would be too difficult.

I asked, Is there a deadline for cancelling?

Patient: We have to cancel before we get there, we can’t cancel after we arrive.

I then asked, Do we have to cancel ten days or so before?

Patient: We have to cancel before we get there, we can’t cancel after we arrive.

The third time I repeated the question, he understood and said there were no restrictions.

Year Sixteen

Normal activities during this time period were the same as year fifteen, including attending church, walking along the seashore daily, an exercise class twice a week and a singing class once a week at the Alzheimer’s/Parkinson’s Association facility, being board members of our homeowners’ association, visiting the local art museum occasionally, and going to movies. Patient wrote a monthly column for a magazine he used to manage. Patient used an exercise bike and a rowing machine every day before shower and breakfast.

JANUARY

Physical symptoms: For two or three nights, Patient tossed in bed and fought with the covers. One night, Patient left bedroom, and slept the rest of the night on the living room couch.

Patient fell quite often in the house, so he started using a stick or cane.

Actions taken: Patient had been taking reprinerol, but decided to discontinue it as it gave him hallucinations and interfered with sleep.

Cognition: Lack of spatial judgment—Patient tried to force his way between a love seat and its side table, but there was no room.

FEBRUARY

Physical symptoms: Mid-February, Patient started experiencing pain from a hernia, and surgery was scheduled for mid-March.

Actions taken: Neurologist scheduled an MRI and artery scan at the end of the month, which found deterioration, but no brain cancer. Doctor suggested to Patient that he should turn everything over to me.

Physical symptoms:

Sunday, 2/14. Patient in some pain.

Tuesday, 2/16. Patient had a bad night, and slept on the sofa.

Cognition: Sunday, 2/14. When dressing, he tried to put on a white piece of paper instead of his socks.

Tuesday, 2/16. Without his cane, Patient found he couldn’t walk. Patient wanted to put his pants on to go out, so he took off his pants and shoes, then put his undershorts and shoes on. I suggested he take his shoes off, then put his pants on. He told me to let him do it.

Sunday, 2/28. After lunch, Patient walked out of bathroom with an empty toothpaste box, and fell. He said he was taking it to the trash, but walked into his office instead.

MARCH

Physical symptoms:

Tuesday, 3/2. Patient spent the night sleeping on pillows on the floor.

In mid-March, Patient had hernia operation. When he was on painkillers, he was not making much sense. Until he was back to normal, we used the wheelchair to get around.

Actions taken: We bought a reclining/lift chair and ordered a scooter for use when walker or cane was not enough.

We also exchanged our king-size mattress for two twin mattresses on the king platform in order to separate occupants and make it easier to control the results of Patient’s restlessness. We erected a pillow barrier between the two mattresses.

Cognition: Friday, 3/26. At breakfast, Patient wiped his mouth on the place mat instead of his napkin. Immediately after taking the 8:00 a.m. dose, Patient dropped the pillbox on the floor. When it was picked up, Patient was going to take another dose. He didn’t remember he’d done it already.

APRIL

Actions taken: Thursday, 4/9. A scooter was delivered.

Cognition: Monday, 4/25. Patient put his pills into his empty yogurt cup instead of taking them. Patient tried to put his shoe on heel first. He wanted to leave early to go get gas.

Friday, 4/30. We had a heated discussion about how to make a bank deposit.

MAY

Physical symptoms: Thursday, 5/27. Patient fell onto his exercise bicycle and broke two ribs.

JUNE

Actions taken: We traveled by air from Florida to New England. Alerting the airline that Patient required a wheelchair made travel easier.

Cognition: Friday, 6/4. When we came back from a walk, Patient hung his cane up on a hook, instead of his cap.

Wednesday, 6/23. Instead of dressing after his shower, Patient got back into his nightclothes. At breakfast, he reached for my teacup instead of the milk, and finished with both his tea and mine at his place.

Saturday, 6/26. Patient was a little slow in the morning. When he got up after breakfast, he used the scooter to go over to his chair, sat down, then got up onto the scooter again.

Caregiver: Are you going to brush your teeth?

Patient: No, toast—oh, I’ve already had toast.

JULY

Cognition: Wednesday, 7/21. Patient walked from his recliner into the front room holding a shoe and looking for his other shoe—both had been next to his recliner.

Tuesday, 7/27. Patient had a semi-good night, slept a little late, and after exercising, forgot to shower. At breakfast, he nodded. Acting out of habit without focusing, he reached for his teacup with no tea in it, didn’t finish his cereal, reached for a spoon to put jam on his toast, but there was no jam on the table.

AUGUST

Cognition: Sunday, 8/8. Acting out of habit without focusing, Patient emptied his bowl of fruit onto his cereal.

SEPTEMBER

Cognition: Tuesday, 9/7. Patient was confused about the order in which to put on his brace and slipper.

OCTOBER

Cognition: Saturday, 10/16. Patient