I'm old, overwhelmed, tired, angry, filled with grief.
My husband of 51 years has PD--diagnosed July 2020. The PD and the drugs are confusing him. He has daily hallucinations. Periodically, his eyes sparkle. He sounds like himself. I see the old him. I think I can let him have autonomy. Twenty minutes later, he's seeing people, thinking slowly, eyes dead, can't speak or walk, he falls. We are living with family, having sold our house to seek medical care in another state. Now the market at home has escalated to the point I can't find anything suitable we can afford. It's hard taking care of him here, though our family is just wonderful. All the other things that go with moving are also a problem--insurances, car stuff--the normal things a person has. Insurance has been a problem--all docs out of network. Big bills wracked up before I realized it. Changing insurances. The anxiety of how I will pay for it all.
To top it off, I have problems too. I came from an abusive family and have C-PTSD--unresolved, therefore, I have a load of my own to carry. The triggers that present themselves from the people he sees, and the fact that he doesn't know me sometimes or thinks I'm some other woman, are just horrible. We have had a long, happy marriage. I don't want his last memories of me to be the angry shrew I feel like I am becoming.
--Essie
If you watch the videos, you can see how chair exercise has been adapted for sitting or standing movements.
Videos are also available for home use.
I feel for you and your husband. PD is an awful illness. I really don't have an answer for you, but if there is a place that offers the Rock Steady program, you might want to look into that. My husband participated in it until the Corona virus shut down the gyms. My husband too has PD. Well, let's just say it seems my husband being going down hill with being in hospital twice last year for UTI's and sepsis. Anyway, anytime you want to talk, feel free and shoot me a private message. God bless you.
We all (patients and caregivers) get mad or frustrated with PD now and then. The trick (and that’s a HUGE trick!) is to soldier on anyway, empower yourself with knowledge of PD, get to grips with whatever PD throws at you, adapt, overcome and get on with life.
Acceptance seems to be a daily activity instead of something you do at one point in time.
The ‘wolves’-metaphor comes to mind:
Indian grandfather to grandson: Inside me two wolves are fighting.
One is evil - he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, self-doubt, and ego.
"The other is good - he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith.
"This same fight is going on inside you - and inside every other person, too."
The grandson thought about it for a minute and then asked his grandfather,
"Which wolf will win?"
The old chief simply replied: "The one you feed.
When you are going through toughest of times, click on the link and watch this video https://bit.ly/30iaHU9 it empowers, is knowledgeable and gives full info on how to help yourself and live with PD.