Parkinson’s Disease, Helping Your Loved One Cope
Moving Bodies, Parkinson’s Disease
We take our bodies for granted. If our brain tells our arm to extend, it will . Our brain tells our hand to rest in our lap, it obeys. For those with Parkinson’s Disease and other movement disorders, it doesn’t work that way. Their bodies betray them.
My dad has Parkinson’s Disease. It’s a movement disorder, a progressive neurological disease. There is no cure. Medications lessen the symptoms but they don’t go away. There is no test for it, it’s diagnosed by its symptoms. First signs are usually shaking hands or arms, often noticed first in one hand. People with Parkinson’s have a lack of dopamine in the brain which affects the nerve cells. It causes tremors, uncontrolled movement at rest, stiffness, balance problems, speech and swallowing difficulties, among other things.
Dad received his diagnosis about two years ago. Since he’s already in his nineties, he may escape some problems faced by those diagnosed at a younger age, but it’s still debilitating. So far, it has affected his balance, walking, fine motor skills and his voice/swallowing. He’s also lost his sense of smell. His shaking hands are troublesome and upsetting to him. Squeezing a tennis ball helps him deal with his hand shaking. As long as he is squeezing, the tremors stop, but start again when he relaxes.
He has been healthy most of his life. Other than coronary bypass surgery twenty-four years ago, he’s had few health issues. He has a severe hearing loss, but by lip-reading and hearing aids he’s adapted. Until this diagnosis the only pills he took were for cholesterol and some OTC vitamins.
Adjusting to Changes
It’s been an adjustment for a guy who, like most guys, thinks of himself as strong–the one who could fix anything through brute strength, if nothing else. I know it’s hard for him to sit and watch as I dead-lift my mom from bed to wheelchair. He wants to help. In his mind, heavy lifting is his job. His balance and the weakness from Parkinson’s make it impossible. He has worked hard all his life, from age nine until he was eighty-five, when he retired. Sitting on the sidelines is not his style.
Dressing himself is becoming hard. He’s rigid about the type of clothing he wears. Wearing sweat pants is not his style. They would be easier for him to put on. Elastic waist pants, pullover shirts, loose socks and Velcro-fastener shoes would make his life simpler. We’ve gotten him to wear polo shirts, but he insists on jeans or slacks with a zipper and belt, tight-fitting socks and lace up shoes. Unfortunately, he can no longer tie his shoes or get his socks on. He has trouble fastening buttons and zipping zippers.
He is at high risk for falls, but insists he won’t fall, though he’s fallen more than once. Conveniently, he forgets about the fall as soon as he’s upright again. Denial is his coping strategy. We try to balance keeping him safe and giving him independence–not always easy.
Though to him it sounds loud, his voice has become so soft, it’s hard to hear. That’s a change, he’s always been a big man with a loud voice. He’s still big, but stooped. He observes choking precautions because of swallowing problems. These include small bites, not talking while eating, dry swallowing between bites to clear the throat.
Because he can’t smell, his sense of taste is lost. That can have its merits–I can give him the weird teas I’ve bought and don’t like, like decaf chocolate hazelnut (what was I thinking?). He says everything tastes like chocolate–good for the dessert course but I’m not sure I’d like chicken that tastes like chocolate.
How Can We Help?
How can we help our loved ones living with this disease?
The National Parkinson’s Disease Organization has videos on this site http://caremap.parkinson.org/
about the problems Parkinson’s caregivers face. The information is good, unfortunately healthcare professionals are speaking (we are boring) in a monotone voice with a slow speech rate. Because I’m impatient, the tips sheets they list, were easier to absorb and quick to read. This video is of caregivers sharing their personal experiences. I found it touching. It is mainly spouses talking about the problems they face caring for their mate with Parkinson’s.
There are many support groups for Parkinson’s patients and caregivers. I have a friend who takes her husband to a yoga class for Parkinson’s patients. Exercise is important. Parkinson’s patients stiffen up when they are inactive. Bed rest for those with Parkinson’s can really set them back. A yoga or tai-chi class that focuses on balance and core strength is great.
Programs for voice strengthening and swallowing are available. My dad got a one-on-one class from home speech therapist. The speech program called LOUD and accompanying movement program called BIG addressed problems faced by Parkinson’s patients. Their movements become small, tip-toe stepping, or shuffling gait, small hand and arm movements. BIG helps them extend their arm and leg movements.
Below is a YouTube clip from a news program about a BIG and LOUD class in their local area. You can ask your doctor for a referral to a LSVT (Lee Silverman Voice Treatment) BIG and LOUD therapist in your area. The help and mutual support are what gets many through the experience.
Have a good caregiving day,