“People with Parkinson’s frequently tell us that a lack of understanding from the public is one of the biggest challenges they face.”
This may be true for many, but it is not true for me. I have always found the public very helpful and polite. It is my family who are my biggest challenge. I live alone with my wife and daughter and feel as welcome in my own home as a turd in a swimming pool. I went through a dopamine agonist phase which I am certain blighted my relationship with my daughter while she was growing up. Whenever I speak to my wife, as politely as I can, my words are frequently weaponized and somehow used against me.
I realize this cannot be fixed, but I thought I should speak up for the public because many of them are very nice.
I would have thought this was nonsense but for the fact my husband’s sister in law has shown absolutely no understanding whatsoever, and his brother very little understanding, of his difficulties. She takes offence at the slightest provocation if he says anything though it’s never intentional on his part.
Like you, we’ve found the public pretty understanding. I think in general people are more understanding these days than in my youth. But maybe not those you live with!
What is a ‘dopamine agonist phase’?
Dopamine Agonist phase will be a reference to the horrific impact of side effects from that type of Parkinson’s drug, aka Mirapexin, Pramipexole.
The side effects are listed in the leaflet and include severe impact on
excessive gambling, with severe consequences
increased sexual interest and behaviour,
uncontrollable excessive shopping or spending
Binge or compulsive eating
A key sign is the apparent loss of inhibitions in controlling actions.
The compulsion to do things to excess.
Having a typical Parkinson’s expressionless face will only add to the tensions in a household.
HOWEVER, while a lot of the attention has been on Dopamine Agonists as the side effects would seem to appear more readily, the exact same side effects are listed in the leaflets for Levadopa based drugs like Sinemet, Sinemet Plus
So always read the latest leaflets with all your medications.