Wife of Parkinson's Patient
Last updated: June 2023
I think my husband has had Parkinson's for more than 10 years. Unfortunately his multiple doctors did not communicate with each other and no one would take my concerns seriously. I am a well educated, knowledgeable woman, but my observations and concerns were brushed aside.
Sadly, his medical care was through one of the top ten medical schools in the US. Eventually I switched his care to a smaller, less prestigious facility. The care was phenomenal and they were quick to assess him with Parkinson's... as I had suspected for awhile.
So my advice is to shop around if you are concerned. I have been told that major medical centers are less interested in "ordinary" ailments than unusual medical conditions. I don't know if this is true, but the government is more willing to fund unique ailments. Sadly Parkinson's has become a run of the mill ailment.
Managing Parkinson's dementia
My second concern is that on the multiple Parkinson's advice and help websites Parkinson's dementia is rarely addressed. Physical ailments, such as involuntary movement, difficulty swallowing, difficulty moving, inability to drive, or speak are problems that have various solutions.
The patient is still the person that you know. You can discuss the problems, talk about solutions, etc. But when someone has Parkinson's dementia the concerns are more difficult to deal with. I wish I could discuss whether or not we should get our roof replaced, where to order dinner from, whether he will be able attend our granddaughter's college graduation. I can't.
Parkinson's dementia has removed these common discussions from my marriage. Instead I have to explain and explain and explain the situation. Sometimes it penetrates, sometimes not. It is heartbreaking to see a smart, vibrant, and accomplished person slowly fade away.
Why is this horrible problem never addressed on the multiple Parkinson's websites???? Is it because it is a problem with no workable solutions?
Do you experience issues with spatial awareness?