Parkinson’s disease – I Just Have to Say…

The logical P word for caregiving would have been “patience”, and it’s true that you need that, but there’s not much more to say about it, except that it requires some understanding. So here is another “p” word that we have been dealing with at home that makes patience more important.

Parkinsonism

It’s an umbrella term for a group of neurological symptoms that can have different causes. It’s not the same as Parkinson’s Disease (PD) but people who have PD have most of these symptoms. So do many people with Lewy Body Dementia (LBD), and there are over a dozen other conditions which cause parkinsonisms. The husband has a few of these symptoms and they are the most discouraging for him because they are so visible and he doesn’t see them improving much with his therapy. They are all movement problems. Here they are:

• Altered gait

• Tremor at rest

• Slowness

• Stiffness

• Balance problems

My aunt, who has Parkinson’s Disease, has all these movement problems as well. They are caused by a lack of a neurotransmitter called dopamine. She is able to take a drug called Levodopa to replace the dopamine and it does lessen her difficulties. But drugs like this can increase other undesirable symptoms, like hallucinations, in Lewy Body Dementia, so it hasn’t been recommended for the husband.

These parkinsonisms were some of the earliest symptoms that caught our attention several years ago. I could hear my husband walking around the house long before I could see him. He would shuffle, not lifting his feet, and take tiny steps. We teased him for walking like a pregnant lady.

Another characteristic of his walk is that he doesn’t swing his arms at all. There is a noticeable rigidity. And last week, for the first time, he mentioned that he got walking and was leaning forward and felt that he might not be able to stop easily. These are typical parkinsonian characteristics.

We used to walk often in a nearby mobile home park in Florida. That was before the difficulties began.

Last year, he had several falls and became wary of cracks in sidewalks, door jambs, stairs and any kind of uneven ground. He didn’t like to walk on the lawn, or in the woods anymore. The slightest bump or dip made him feel unbalanced.

Getting in and out of chairs became more difficult. He and my aunt used to have conversations about how the day was going and how many tries before they were able to stand up from their recliners. Now it amazes me how long it takes him to get in and out of vehicles, or even to sit down at the dining table.

And the tremor. It started in his right hand, and commonly it is one side that is affected first. I think it scared him because it started last summer and that was when he was sure stray electricity in the house was causing it. He was aware something was happening but wasn’t sure why. He is able to quiet the tremor with conscious effort or with meaningful movement, but at rest, when he’s not thinking about it specifically, his hand is always shaking. It has begun in his left hand as well.

Parkinsonisms affect how we as caregivers look at our loved one or client. They make them appear older and feeble which is distressing to them and to us. They also make the word “patience” a necessary skill as we learn to wait, to empathize, and to assist when necessary.

Mobility – did you know that being able to move around is part of the definition of a living being? It’s one of the things that distinguishes us from plants and minerals. When it is altered, disabled or gone we have problems.

So many of the issues we, as caregivers, deal with are mobility issues. When our family member/client can’t walk, or perform the activities of daily living it becomes our role to substitute our own effort and energy to make tasks possible and safe.

Sometimes we turn to equipment (See post on letter E) to provide mobility. Wheelchairs, walkers, lifts of various kinds, and braces are all useful, so it is good to know the general principles of how to use those things. As a caregiver for a quadriplegic woman, I appreciated this equipment and got to be pretty good at taking things apart and fixing them. Yes, like any piece of equipment, these things break and need maintenance regularly, but they do make moving possible for your person and less physically taxing for the caregiver.

But other times, less assistance is needed – enter the principles of body mechanics. Knowing how to help someone get out of or into a bed, or a chair, without hurting yourself is critical. Many times accidents and falls at home can be prevented by learning transfer techniques, a transfer belt, and preparation of the environment (taking up rugs and objects that could trip). Caregivers can learn all this useful stuff by going to occupational therapy or physical therapy with their person. These therapies are almost always available and prescribed by doctors for their patients.

My husband, like many people with Lewy Body dementia or Parkinson’s Disease, has trouble with his balance and compensates by moving slowly and carefully. He has fallen a number of times. He has a shuffling gait when walking and that was part of what led us to seek a diagnosis. One time when walking, his muscles locked up completely and I had to go for a wheelchair so he could sit and be wheeled back home. He also has a cane for times when he feels especially unsteady.

We were out on a walk and he needed a rest.

It’s so unfortunate that people with mobility problems are often also tired, weak, and unmotivated to exercise. Caregivers need to be cheerleaders (yes, another hat to wear). Encouraging your family member or client to do the activities that he/she can is how you help them to stay functional. My husband adopted an exercise routine that could be done to music. He calls it his “dance”, and it’s something he can do with other people when they don’t mind getting a little silly.

Movement, however minimal, also helps attitude and stimulates healing and recovery for some.