Specific muscle weakness results from disuse, not usually as deterioration of the muscles specifically. The inability to organize movements with lack of coordination can look like weakness. It also causes rigidity. Arms hang close to the body and no longer swing in tandem with the movements of the feet. This shoulder stiffness and lack of coordination away from the center of the body makes it difficult to put the hands into the sleeves of clothing the same way as was done in the past.
Watching someone with LBD struggle with coordination tasks is like watching someone try to tie a bow while wearing cooking mitts. This may be easier to understand if you think about trying to fit a car key into the lock of a car when the fingers inside big mittens are very stiff with cold.
Whether because of weakness or incoordination, my husband, Dean, would drop the milk carton onto the floor as if it were a bowling ball, even though he could squeeze my hand with very good strength. I modified to allow him the best chance of success. I bought small containers of milk and gave him his liquids in sippy cups to prevent spilling or burning himself with hot liquids. Of course, caregivers may need to assist completely on a bad day.
Exercise really can make a difference.
Lifting a weight can help retrain muscles to be more coordinated. It does not need to be the maximum amount of weight that trainers in gyms teach to attain power. It only needs to be a minimal weight but lifted 30 times in each direction. The movements of the legs away from the body sideways and backwards helps balance reactions. The movements of lifting the arms over the head, out to the side and backwards helps flexibility with all daily activities. If lifting any weight is too difficult, just moving the arms and legs away from the midline of the body will help keep flexibility. It should be done several times a week. Exercise tapes can be a good activity to help remember movements. Many support groups provide exercise classes to help people maintain flexibility.
Practice tasks that are difficult, to help the tasks get easier. These are some simple tasks that I gave my husband to do on a regular basis. Dean would practice wringing out a wet dish cloth standing at the sink. This builds muscles while working on movements of the wrist that are needed to open door knobs. We did activities at the table: picking up pennies and putting them into a container, screwing lids on and off empty jars, coloring pictures with markers or crayons, writing notes in longhand, and writing the grocery list. None of these tasks was easy, but Dean felt he needed to persevere. He especially got a workout modeling soft clay with the granddaughters.
I could get more arm motions if he was “playing a game”. While sitting, he would
throw and catch soft balls or bat balloons back and forth to me. I would sit in a chair about 10 feet away from him. We would each hold a big soft ball. Initially we started throwing one ball back and forth. On our adventurous days, Dean and I would toss our balls at the same time to the other person. Sometimes the balls would crash together and fly all over the room. But with practice we got fairly good at keeping the tosses going. He became so talented at our throwing game that we were able to toss two tennis balls back and forth. More often than not, we ended the session with some good laughing as I went around the room retrieving stray balls.
One of the very best exercise activities that he did was practicing on his old trumpet. Holding up his trumpet and working the fingers helped the stamina in his arms while building his breath control. His voice projection was actually normal during the year and half that he practiced on the trumpet. Working the keys helped his finger dexterity and remembering the old music seemed to enhance his memory. When he started, he could only play for 3 minutes. That increased to 15 minutes. It never became beautiful music, but it was beneficial and he enjoyed it.
Each person will need to find what hobby or activity is motivating to exercise the arms and hands. Working the remote control on the TV doesn’t count as an exercise.
This article is an edited except from Ms Jennings book: Living with Lewy Body Dementia, One Caregiver’s Personal, In-Depth experience. The book is available from all bookstores or in digital formats such as I-Book.
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