I attended Marilyn Basham’s presentation this afternoon on “Caregiving Made Easy for Parkinson’s Individuals.” She’s the physical therapist (PT) at The Parkinson’s Institute (TPI). I picked up a few tidbits at the presentation that I thought I’d pass along. As the presentation was focused on Parkinson’s Disease (PD), not everything applied to the situations we are dealing with but there were still many interesting points that apply.
Here are the points I found interesting…. (with some of my comments in parantheses)
People with PD and Parkinsonism MUST use a walker or wheelchair to make them as safe as possible. It’s very important to have mobility and postural strategies worked out with a physical therapist and/or neurologist.
PD is evident when 60-80% of the cells in the basal ganglia have died.
The “automatic motor programs” we have are stored in the basal ganglia. One of these “programs” is what tells us that to stand up from a low chair, we need to scoot to the edge, put our feet underneath us, lean forward, and push up. PD folks must either receive cues as to the steps of these programs, or they must practice it so many times that doing it becomes somewhat automatic again.
To overcome freezing (called “gait initiation failure”), you can put masking tape on the floor to provide a visual cue. Put the tape at thresholds or where ever the person often has the freezing problem. (Of course this won’t work for those with PSP who have downward gaze palsy.)
A suggested verbal cue to give someone who wants to speak is: “Swallow.” (pause to let the person swallow) “Take a deep breath in and then, at the top of your breath tell me what you want.” (pause to let this happen) Swallowing is important because fluid accumulates in the back of the throat and those with PD are not aware of it. You can give them gum to initiate a swallow response.
Before someone with MSA (or PD with blood pressure fluctuations) stands up, give them a glass of water with salt in it or Gatoraid. This will increase the blood pressure. Obviously the person’s diet and blood pressure medication needs to be taken into account before following this suggestion.
We must give time for those with these diseases to process information! Be patient! Give long pauses. Don’t overload them. Don’t give them more than one complex task at a time. Walking is a complex task.
(Some of you know that my father and I communicate by our holding up fingers to designate an answer. Example, “do you want 1 for coffee, 2 for tea, or 3 for nothing,” and I hold up 1, 2, and 3 fingers. He answers by holding up fingers. Long after the fingers come up, he may try to verbalize the answer.) I asked Marilyn why my father could hold up fingers faster than he could verbalize a response. Marilyn said she didn’t know why but pointed out that parents of small children teach their children sign language long before the children can verbalize.
Dementia is rare in PD. (It’s definitely common in the Atypical Parkinsonism diseases.) PD folks may lose their keys but they still remember what keys are and how to use them. (I thought that was a good story for remembering what dementia is. My dad, for example, cannot remember how to use an ATM card. I see the dementia very clearly.)
A patch for Sinemet is in the works. (Some of your loved ones take Sinemet.)
The head of TPI thinks that PD is the most curable of all the neurodegenerative diseases. (Let’s hope he’s right because hopefully those diseases related to PD can be cured quickly too.)