September 8, 2021 at 7:57 am #21730
My Dad used to love going to card clubs, social activities with his high school buddies, and football games. But ever since Parkinson’s entered his life, he seems to prefer a quiet lifestyle at home. But I worry that he may be losing interest in things that are good for him. Has your PWP lost interest in things they once liked?
September 8, 2021 at 1:02 pm #21813Larry RiceParticipant
I did until treatment made it possible for me to do things I enjoy again.
September 12, 2021 at 7:19 am #21834Habib nazarianParticipant
I used to spend time with old friends playing backgammon. I used to play violin and piano, and used to paint. I have lost interest in all.
September 14, 2021 at 2:51 pm #21843SandyParticipant
My husband is a introvert and I am the extrovert. He prefers to stay home unless he is with me. Sadly, he does not have any hobbies or interests in doing anything the past two years. I think once COVID and the mask thing is over, I can see him enjoying going to estate sale to find antique items to tinker with to repair. Otherwise, TV is his new friend.
September 14, 2021 at 5:54 pm #21846
Sandy, see my reply to Mary Beth Skylis, it may help.
September 14, 2021 at 5:52 pm #21845
Hi Mary Beth, the two things I’ve seen work are mannitol and the infrared coronet. Mannitol turned my husband’s life around. He had extreme apathy, caused by lack of dopamine. It improved so many of his symptoms.
The infrared coronet has worked for many PD patients, including one, as reported by his wife, who picked up his brushes and started painting again. When I mentioned it to my husband’s neurologist, he said that a number of his patients have reported that they are using it with great success. It’s made in Tasmania, Australia, is quite expensive, but it’s worth a try.
My husband is now using the coronet. Too early to tell if it helps. The mannitol has worked wonders for 18 months, but not as well now as it was.
I hope this helps.
September 30, 2021 at 12:01 pm #21938
Thank you for your response. I’m so glad that you’ve been able to find some things that work to fight his symptoms. Mannitol is something that we’ve considered trying too.
October 22, 2021 at 3:43 pm #22119Blanche GlazierParticipant
My husband never had much interest in anything other than cars, but he could always take care of repairing anything around the house, keep the cars clean, and would go places with me even if he didn’t want to. He lost interest in the normal marital relationships, including affection about 30 years ago, and refused to make any effort to discuss the situation with his physician – he would just shrug and say ” I don’t know”. His condition is complicated by diabetes, COPD, an aortic valve replacement, loss of ability to think through processes as simple as putting up a key hook. He says he loves me, but rarely shows affection, and has no empathy for my physical limitations. He sleeps 12 to 15 hours a day, and watches TV when he is up. He has lost the ability to actually work the TV. He was a professional driver, and is still able to safely. We have had nothing to hold us together while working through the Parkinson’s deterioration, and I can’t help the resentful feelings that surface several times a day. Does anyone else have this situation?
November 8, 2021 at 10:21 am #22307Kim HarrisParticipant
My husband was diagnosed last year with PD. He seems to have lost interest and I think confidence. He doesn’t want to do anything or go anywhere. Any suggestions or anyone else’s experience would be helpful. Thank you
March 2, 2022 at 1:42 pm #23322VicParticipant
I too can be resentful! But when I get really upset, I want to be by myself. He has lost interest in it seems everything.
He constantly tells me how much he loves me, but it makes me feel trapped and I feel like I can’t breathe. I had a therapist but she really didn’t help much so I stopped. He has family but they seem to be sooo busy that we only ask for help when we are desperate. I feel myself starting to resent them.
he is getting exercise, every day he alternates cardio and personal training and is feeling stronger.
this is a suck disease!
November 8, 2021 at 9:53 pm #22309fakhiuddin ahmedParticipant
My wife used to like singing and hear her own singing recorded on CDs, but now, rarely does she sing or put the CD s on. Often, she just sits not wanting to read or watch TV. She seems to require me to interact with her and not do my work.
November 11, 2021 at 1:01 am #22324Robert HarrisParticipant
Except for a few romantic disasters with girls when I was younger, I’ve always been basically a happy person. Even for years after PD hit me I was still fairly happy, helped in large part by regularly remembering how happy and blessed I was throughout my “first 50, then 60, then 70 years.”
However, in the last maybe two years, I have noticed that I get somewhat more frequent OFF periods, sometimes when one of those hits I start to play the “woe is me” tapes. Right now I am working on a book discussing the literary tropes in the Bible (example metaphor: “God is my fortress”). Usually I’m upbeat and ready to work late when I’m on a roll. But when an off period hits me (example: eating a big, fat cheeseburger with little else, causing the protein in the burger to neutralize the dopamine I just took a little while earlier) I begin an OFF period with exhaustion, tiredness, fatigue, and add despondence to that. My pity tape says, “You’re never going to finish this. Why keep on working,? It’s not that a great anyway. Go to bed, or nap all day.” If someone finds out I’m sad and asks me to go out or do something fun, I just don’t feel like it.
All this to say if I were you I would ask my neurologist if (a) I am in need of a raise in my daily dopamine load or (b) I should chew half of a CDL 25/100 as a “booster dose” when I feel down or uncaring about life or (c) if my medication regimen needs addressing. (Example: add a COMT to your CDL.
I would not, without further discussion with my neurologist and research, ask my neuro to add an antidepressant to my chemical load. That might be an option down the road, but I wouldn’t jump to any hasty actions.
Final note and disclaimer: I am not a medical doctor and my experience is limited to my own 15+ year experience and observing other Parkies.
November 11, 2021 at 8:10 am #22327
Robert, thank you for sharing your experience and your thoughts. I find it particularly of interest that you notice OFF periods in relation to food. Is that something that has caused you to make adjustments to your diet?
November 11, 2021 at 6:59 pm #22334Robert HarrisParticipant
Yes, it didn’t take long to make the association between protein and OFF periods (in other words, “Eat a cheeseburger, feel like zero.” So the remedies are (1) mix your protein with low or not protein food: hamburder and rice, hamburger and noodles, beef soup with lots of vegetables, etc. (2) increase your meals to five or six a day, with lower protein (and overall calories) per meal. When I was single I ate a lot of Marie Calendars and other TV dinners. They all list the amount of protein on the carton: 15 grams is a winner. My formula is 15 grams or less of protein, your body’s a winner; 25 grams or more, you’re going to be sore.”
The rule works pretty well, though I still try to keep the protein down.
But then there are those six-inch chicken and bacon ranch melt sandwiches from Subway, with 38 grams of protein, which is as close to certain death as I ever want to be. *
*Fact Check: This claim is exaggerated. If you are as healthy as a horse, there is a possibiolity that you can eat most of a chicken-and-bacon sandwich and recover completely (Parkies, well, I wouldn’t push it.)
March 2, 2022 at 5:04 pm #23323
My husband had extreme apathy before he was diagnosed with PD. He was initially treated in hospital for depression. He was then rediagnosed with Lewy Body dementia. Levadopa appeared to do nothing. Fortunately he was attending the Movement Disorder Clinic at The Royal Melbourne Hospital, here in Australia, where a number of neurologists saw him. One suggested trying the Neupro Patch. Within a few weeks he was back to normal mentally and out of bed, where he’d been spending most of his time. He was rediagnosed with Parkinson’s.
The patch worked for a number of years, till 2019. Then he returned to the bed. On the HealthUnlocked Parkinson’s site I read about research being done in Israel on mannitol, supposedly a diabetic sweetener. I had our pharmacist check it out, sourced it here in Australia from an importer of diabetic foods and off we went.
It was amazing. Within a week he was off the bed, communicating, doing crosswords, reading newspapers. We even went to friends for dinner, where he talked all night. The improvements went from there. His dizziness and fogginess disappeared, his Parkinson’s mask also went. He started a Parkinson’s exercise program twice weekly. I have detailed all of this and more in a post on the HealthUnlocked Parkinson’s site.
I discovered later, when he was in hospital, that mannitol is used in hospitals for brain injuries. When I mentioned it to our local doctor, he said that when he was training in the late 1970s in one our major hospitals, they used it for brain operations.
From what I’ve heard from others on the site, mannitol seems to work very quickly for non motor symptoms like my husband’s, and can help other symptoms as well, but takes longer. But, like all meds and supplements, doesn’t work for everyone.
Mannitol can cause gas, so needs to be started slowly. The recommended dose was 1 tablespoon, but I’d start with a teaspoon.
My husband’s neurologist was surprised and delighted when he saw him. He immediately checked the research, and in fact, sent us more information on the research.
We have just bought the Wellred infrared coronet and Therapad, which has helped other PD members. The Therapad helps with the gut.
I’m using them too. They might help my poor little brain. The neurologist says some of his patients tell him they are using them and he sees improvements.
The recent research done here in Australia was, according to our neurologist, done by highly thought of researchers.
I hope our story helps someone.
March 4, 2022 at 9:10 am #23330GregoryParticipant
I know everyone is different, but for me personally, I find that I relish quiet alone time in my home office or in a park with nature, perhaps because I had such a social lifestyle as a youth. I am in sales and talk to people a lot throughout the week, so I don’t feel like I am missing a social life. I do get very aggravated when people who know nothing about PD tell me I spend too much time in my office or not enough time out doing social activities and criticize the amount of time I relish being alone, especially when I am in PD pain and just want to chill in my office – I hope that makes sense without sounding too arbitrary or aloof. Appreciate hearing everyone’s opinions –
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