22 March 2012
My husband has Parkinson’s disease. When our neurologist, Dr. Sullivan, first said so back in May of 2010, my first thought was, Damn, he was right. Richard is a bit of a hypochondriac and has a tendency to exaggerate. He’s thought he had bone cancer, skin cancer, and on and on, and when he said he had Parkinson’s, I didn’t believe him. But there was definitely something wrong, and our friends who didn’t see him much noticed it more than I did.
Even back in 2009 and 2010 he was already starting to have trouble with his golf swing. His hand would shake slightly when he placed his ball on the tee and when he was holding his fork at the dinner table. He said he felt little twitches in his arm. He started acting out his dreams, which I just learned is due to a REM sleep behavior disorder; one of the strongest pre-diagnostic symptoms of Parkinson’s, along with a lost sense of smell and subtle changes in cognition.
He saw phantasms by his bed at night. He would lose his train of thought, losing words and finding him- self unable to complete sentences. I’d find things in strange places, like his cell phone in the cupboard. He had panic attacks that sent us to the emergency room for hours and hours.
In 2011, he got so paranoid that someone was plotting to get him as part of a sting operation that he would arrive at the airport to pick me up hours before my flight was to arrive. He was afraid to stay in the house by himself. If the doorbell rang, he would hide. “It’s just a kid asking for money for his baseball team,” I said. This was of no consolation. I thought he was developing a mental illness.
Now he’s less productive by the day. No ambition. No gusto. Meanwhile, I continue to work my ass off. Not a good balance.
It might sound like I don’t love him. But I do. More than anything. More every day.
18 April 2012
Today is a scary day. Richard wanted to transfer some money from one bank account to another. He should have transferred money from our personal savings to our personal checking. Instead, he transferred money to my business checking. “No problem,” I said. “Just transfer the money from the business checking account back to personal checking.” But there was a problem. Richard couldn’t follow the logic. His mind got frozen. He needed help. But he couldn’t under- stand it even with repeated explanations. And he was frustrated. “I used to be good at math.”
And now I’m scared. Scared that he won’t be able to keep up. Scared that I will lose him and that he will lose his mind. And how will I pay for his care? How much will it take? Can I do it?
1 September 2012
It’s all gone downhill a lot since then. He never transfers money. Won’t ever again. It’s sobering, really. He’s very depressed today and has been a lot lately. He started working with Susan, his cognitive therapist, a few months ago, and the brain apps she recommended seem to help, but not enough. He does work on them for hours every day though. That’s to his credit. His writing is eloquent when he writes. But he’s not writing nearly often enough. He’s trying, but I don’t think he’s trying his hardest. His body hurts all the time, mainly from the peripheral neuropathy, I think. I massage his feet and legs almost every day.
Maybe he is trying his hardest, but it might be the first time ever, except for basketball and golf. “Dickie, why don’t you try?” That’s what his grade school teacher said. Richard is one of those annoying people who is good at everything. He didn’t have to try hard, and he’s still better than almost anyone. This will be the time when he is going to have to try hard, and he still won’t win. These are formidable invaders. I remind him that he has to try his hardest this time, but it’s not helpful.
I really don’t have anyone to talk to about this. Maybe I should find someone. I think of myself as a strong person, but I’m not sure how strong I can be or for how long. It’s going to be a lifelong commitment. I love him so much. But it’s different now.
I don’t think I’m going to be able to travel for my work for very long. I’ve been a road warrior organizational development consultant for years. It’s what I know and what I’m good at. So how can I make a lot of money without traveling? I must get serious about writing and finding another way. I wrote a book on meeting management skills back in 1995, and it did well. I can update and republish that as a start.
I think I should keep a better journal of what hap- pens. I’m surprised to read that it was only April when the confusion over the bank accounts happened. It seems like a long, long time ago.
We’re in London now for my work and have been since the end of May. It’s good, but it would be better if Richard were home and getting more help, especially from Susan. Her help with memory and communication seems essential. It’s the biggest challenge. Please don’t take his brain, or mine either. If I were home, I’d smoke a big hit of pot. It’s hard to cope.
24 December 2012
So much has changed this year. Richard’s memory is a real challenge for him. He can’t remember the date or year very accurately, even though we repeat it several times a day. The apps and writing exercises that Susan gives him are essential. They’re good for me too. We’ve learned a lot about the brain; that’s one benefit.
I worry about money more now. I know I can’t keep traveling for too many more years, and I have to find a different way to make money. I really must start working on my book. I’ve been talking about it for almost a decade. I used to be much more laid-back about finding work. But I’m worried that we’ll need to have a lot more money if Richard needs more care. Parkinson’s is very expensive, even now. I don’t know what we would do without health insurance and money for everything it doesn’t cover. I’m grateful we can pay.
We’re at the age when our friends are dying already. Shawn’s husband, Doug, dropped dead of a heart attack. She’s heartbroken. Our friend Sal tells us he has some rare form of bone marrow disease. This is sobering.
I don’t feel angry with Richard anymore. I used to be frustrated about his lack of productivity. He is a great writer and was doing well writing stage plays after he sold his real estate appraisal business. But then he stopped. I thought it was because we moved back to the United States from London, where the theatre scene is awesome and where he was becoming well connected. But now I understand better. His diseases were in their early phases, but we didn’t know.
There are times I see Richard sitting on the couch with a serious look on his face. When I ask what he is doing, he says, “I’m trying to figure out what is going on, but I can’t.” He knows his brain is changing. This is heartbreaking.
I cherish our time together. We don’t know how long we’ll have. He doesn’t feel good often, and his communication is frequently unclear. I can usually decipher what he is talking about, but others can’t all the time. But it’s important to get out and try. He started taking the Exelon Patch for memory, and we’ll see if that helps. Our neurologist tells us things will only get worse. This is very sobering.
You will find my book Parkinson’s: A Love Story with Dementia for Dessert on Amazon. https://www.amazon.com/Parkinsons-Love-Story-Dementia-Dessert-ebook/dp/B07K4RLC2D/ref=sr_1_1?ie=UTF8&qid=1542135434&sr=8-1&keywords=Parkinson%27s+A+Love+Story+with+Dementia+for+Dessert&dpID=41xS3edPH0L&preST=_SY445_QL70_&dpSrc=srch Your feedback and reviews are most welcome.
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