Hi, I literally just found this place. It’s a bit of a relief.
I’m in a place in my mind that is confusing, because I can’t predict what’s going to happen next, I can’t figure out if it’s him or the disease. One day it’s one thing, then a couple days later it’ll be something else.
He’s had this disease for about 20 years, he’s now 64. And I’m 39. And yep, the pregnancy turned to triplets. So that’s added on top of this disease and I work full time.
I have been journaling things about him for two years, seeing if there’s patterns, anything, to help doctors help him.
It started 15 years ago with stiff arm. And 1 pill.
Because he didn’t tell me about it.
Then 12 years ago he lost his job.
The speech issues started 5-6 years ago, and about 3 years ago he was literally about 75% frozen at night and couldn’t move. He was on 72 pills per day, it was nuts.
I found out he self-medicated.
I finally convinced him to get the DBS.. by the time he agreed, the doctor said it was almost too late. He didn’t qualify for the study because his neuro testing revealed he has 1 percentile visual memory.
After both surgeries in 2016, it was much better regarding not freezing. After the 1st one he had a 3 week grace period when he was normal. After the 2nd, he had 5 days normal.
Since, he has had major mood shifts in the last 18 months. He screams and loses it at the kids, which scares them. He is maybe 50% understood when he speaks. He falls from imbalance every other day but refuses a walker. (He has a cane which seems more like an accessory)
We had an aid for him 2 hours each morning to also help get kids to school, and would help him take walks. But we couldn’t afford to keep it after a year.
I’m a teacher, so now that I’m off for summer, it’s like he relaxed, which means he stopped picking up around the house. He leaves bowls by his chair. (We haven’t slept together in 3 years)
He wore the same shirt for 3 days despite the $2,000 wardrobe we got him.
He shows little emotion.
He refuses to go anywhere.
He won’t go to the boxing for Parkinson’s group.
He won’t go to the library for events.
He won’t go to the health club with me.
He won’t swim either.
He won’t take walks with our friends.
He won’t go to the coffee shop with me.
He stopped writing short stories two years ago.
He just sits all day.
Or does dishes by hand.
That’s it.
We rarely talk.
He says he’s okay. (Dr has him on antidepressants)
It’s as if when I went downstairs to sleep the past 3 years, and cut off sex, then he didn’t care about a damn thing anymore. But he ruined it. For 3 years straight, every night, literally, he would wake me at 2am. We have triplets, they were toddlers. And I’m exhausted. And rejecting him meant I got yelled st. So after 3 years of that, I essentially moved downstairs.
I have a psychiatrist, so at least I get to vent there. But I keep finding myself feeling alone in it. I keep looking for research to tell me where he is, what’s his choice vs not, when it might all end.
And then his mom died. And a month later his brother.
And with children in elementary, and him falling, I can’t protect assets other than buy cars. That 60 month look-back the giver does once you sign up for Medicare/aid? Was too big a risk to do those irrevocable trusts, and we want to protect our home... you know? It’s this never ending nightmare. I’m trying to save for retirement and he’s expensive.
Yeah, I think I’m done typing for now.
I’m just tired.
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3Fishies
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At this late stage, well a little may be to late. strategy that I find helpful "thiamine hcl stops the progression forever..." is the promise of Doc Costantini.
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. See my Profile.
I agree with RoyProb and Thiamine treatment. It is the best way to restore nerve system. I wish I can help you more since I have been in a similar situation before, it was overwhelming. My husband is 67 this year, which I thought there might be almost no hope for him and our future. But I can give you some short advise from my experience;
1. When I was overwhelmed, I told him that he is my comrad, and we will make it better. Whenever fear and tired attack, remember to change it to faith.
2. Take care of your mental health well not by antidepressant but Vitamin B, Lemmon blam , valerian root and those herb tea. Only relax and up beat music because you need dopamine as well☺️ For me, I took both Alinamine and Ashwagandha from my husband stack. It help a lot.
3. Take time, sit down and find out what is the priority in his condition that you want to solve, ie- ruination uncontrollably? , vivid night dream and screaming? Tremor? Mood? I am sure people here will support and willing to give advise.
3. You need time for yourself. Talk and love yourself. Sit and have herb tea with favorite music. 5 mind to fix your neurotransmitter before you can lead your troops. One day the baby will stand beside this strong woman and you will be proud of these difficult day. I will be around to cheer you up💪 As so many people here.
4. Priorities his symptoms and priorities your problem. Every time I face problem like you now, I tell myself we are so lucky that we do not need to prepare money to fight somebody Criminal case, it is just a small legal matter that I can handle it. I can manage it and this nightmare shall end.
5. Follow Roy and his group, B1 May take time but that is the only way to treat at the root of the problem.
Thanks Gioc , I do not write so much due to my eye sight, this is like once in the blue moon comment😁, feel like a mirror image of me, wish she overcome this hard time. Have a great day GioCas🌼🌸💐🌼
Wow, you have your hands full, no wonder you're tired! Have you tried sitting him down & telling him exactly how you feel and see if he'll go to the psychiatrist with you? You also need to talk to his neurologist, or find a new one, & tell them everything you just told us. He may need to have his meds changed, as well as his antidepressant. What I've learned on this site is everyone is different & no matter what kind of meds you're on, some will help one person & not the other. You might also email Dr Costantini & see if B1 might help your husband. Good luck!
I am so sorry to hear that you are in such a difficult place, and I'm pleased that you found this blog site, so that those of us, who have PD, may be of some assistance in helping you navigate through this period of time. Apathy is a lousy consequence that some of us face, as PD progresses. I used to be extremely outgoing, and wouldn't miss an outing. Now, I have to really talk myself into going out to most social events, even shopping and visiting relatives. My wife and daughter help me to get motivated, but it is not easy. I never, ever used to have that problem. I'd just as soon not go see a doctor again, but I need the medicine, if I'm to function somewhat satisfactory. So, in other words, I think I understand a little of what your husband is going through. Of course, this makes it extremely difficult for you, and then having young triplets to be cared for, I'm sure you have become overwhelmed at times. My suggestion would be that you talk to your husband's neurologist and/or movement disorder specialist about this. There are medicines that can help, somewhat.
Apathy, for me, is very difficult to deal with. Having support from Doctor's, family, and friends is important. Getting legal advice and counseling may help, also. The main thing, though, is to try and hang in there, and continue to communicate your needs. Good luck to you, and keep us informed, when you have time!
Thiamine is a dietary supplement rather than a medication. If you're going to mention high-dose thiamine to a neuro, you will need to do some reading-up on it beforehand.
I feel for you, and see some of me in your husband. My wife said I'm always telling at the kids. My defense after 10 times telling kids something yes I'm telling. His is different and way more progression then me.
Me and the wife have seemed to have growen apart. I moved downstairs and we haven't been intimidate for years. More her decision, I'm still wanting to be intimate. Triplets have got to be hard, and your husband seems to have given up. He really needs to get out for the boxing or work out.
Good for you going to someone for your own mental health. That is very much helpful for you.
I’m finding that the personality issues that were less apparent when healthy, have become exacerbated. Like vanity. He doesn’t want to appear sick, so he would always look dapper at appointments. He’d wear the same suits all the time. He refuses to use a walker, even a cane, until I bought this fancy wood cane, and he’ll hold onto that but it won’t touch the ground.
So I’m not a fan of vanity.
He might have given up. You’re right.
I tried walks, the boxing, paid for health club membership he doesn’t use, swimming. Nothing.
I think the remaining spouse can keep the house and a car when their spouse goes into a nursing home. Also her part of any money in both names. Basically they can't bankrupt the remaining spouse when one goes into a nursing home. The advice, of course, is to consult a certified Elder Law attorney. Here's a link to a site where spouses are discussing this very subject. (You can also repay yours and his funeral expenses and preserve money that way.) agingcare.com/questions/pro...
I hired an attorney. In the U.S., if kids are under 18, living in the house, you can keep the house and put money into it, up to $550,000. You can also put the money in vehicles and the govt can’t touch it. Other than that? You have to spend down. We’re in a weird place because everything will be ok if he doesn’t take a major fall in the next 4.5 years. If he does? Then I am assuming they’ll take his half. The attorney suggested a special needs trust, that means anything in the trust after they pass, goes to the govt.
The vanity is something he needs to have therapy and go to a Parkinson's group or see if for the first time if one from a group come see and talk with him. Go to a group yourself as a care giver there is much insight I feel you will get also. One I went to caregivers were there also and they help support and you can trade stories and learn.
Mine won't go but I feel it may help with his vanity. He is an older generation and losing his job and feeling depressed. I'm only 45 now lost my job at 40, but it took me a while in my head to get over it. My head may be like his a bit where bread winner, bring home the bacon to not able to hurts. No consoling will help. He needs to get over it and only talking to another guy in the same situation may help other then licensed therapist.
Once he gets over the vanity a bit, I think you'll find things a bit better.
Looks for a Parkinson's support group and contact see if maybe they can have a group meeting there since he won't leave. It may bring some enlightenment to him or they can advise maybe. But definitely go yourself.
I’ll try again. Maybe sign him up and tell him we’re going for lunch and just take him. Because I’ve been trying to get him to go to a group and he refuses. He says he doesn’t want to see other people worse than him and envision his future.
It is very difficult for a person with PD, who can still reasonably get around, see others with PD who are advanced, and extremely dependent on others.
Yes my Mom says that all the time. I realize it’s scary for her but maybe we’re mossing out on the support and knowledge.
I think the vanity is a sort of anxiety or even borderline paranoia that people are judging the tremor. My Mom says she worried that people will think she’s a drug addict. People don’t think that at all but there’s no telling her. I suppose it’s really hard when your body is shaking, I feel for her.
First go to the group yourself and listen and talk. There support for a reason. Everyone's different the disease affects us different. But there's one good thing, those with the disease understand. One of them can relate, another will relate to something else. And slowly maybe suggestions from them will be more helpful than a doctor. Because the doctor only knows so much. Is worth the disease know as a group more then them usually. Because we aren't just one voice.
One group I went to I was taken back how hearing how bad some of them were and older but doing things I wouldn't think. One guy build his own fishing lures and sells them. Definitely some fine details but he found his nitch that he does not have problems from Parkinson's during that time. Now that's just a hobby but still. I honestly haven't found mine yet.
I even opened up and saw the preverbial light in their eyes as they understood what I was saying.
If the group can get him out of his slump, maybe he'll start exercising and get movement back and start feeling better.
I will say your health and those kids are important too. I know you said for better or worse and still love him so very much. I loved and still do kind of my wife and my kids but the stress she puts me under, is worse. I made a decision to separate and get space for my health. I figure better to distance and live longer then miserable and less.
Wow! What can anybody say, other than, "You need a medal'. That will not do either of you any good, but it will at least let you know that others care about what you are going through.
It is impossible to offer you any meaningful advice unless he changes his attitude.
Let me tell you where I am coming from. I have had my Pd symptoms since 1963. I had to give up my job running a large company employing 1600 people, which my late wife and I established in 1970. Since giving up my job to get rid of the stress, and starting to do regular FAST WALKING, I managed to reverse many of my symptoms to the extent that I was able to come off the medication in 2002 and have managed to stay off it since then.
I am now nearly 84 and am still doing the fast waking, being able to still walk for 7 kilometres in one hour. The biggest benefit is that it COSTS ME NOTHING!
If your husband wants to help himself, and you, and he are prepared to learn how to do the fast walking, AT NO COST TO EITHER OF YOU, then contact me by going to my website - reverseparkinsons.net and I will send you all the information, at NO COST.
3Fishies said: "Maybe sign him up and tell him we’re going for lunch and just take him."
I don't think that this is a good idea. I know that I would be pretty annoyed if my wife did this to me.
3Fishies said: "He says he doesn’t want to see other people worse than him and envision his future."
I think that this is something we can work with.
He needs to be made aware that his future need not be that way. Around the world there are thousands of research scientists working on Parkinson's disease. Every week there are approximately 120 PD-related research papers published. I personally believe that, not just one, but several major breakthroughs are likely to occur within the next couple of years.
The following webpage lists some of the research published in June. See if you can get him to scroll through it.
NB: He doesn't have to understand any of it, he just needs to get the message that an enormous amount of research is being done every month.
The second thing that he needs to understand is that, to best position himself to benefit from those upcoming breakthroughs, he needs to slow the progression of his disease as much as possible.
It is widely accepted that, at this point in time, the best way to slow disease progression is to engage in aerobic exercise (e.g. fast walking, high-cadence cycling, etc. etc.). The following recent paper confirms this.
Have you researched the possibility he may have LYMES disease mis diagnosed as parkinsons . Please do your homework and at least find a Lyme literate DR or send some bloods to a Lyme literate pathology IGENEX USA or similar in GERMANY . Start taking liquid CATS CLAW as it kills those stealth bacteria cheers
My heart goes out to you and your family, but especially to you. I've had pd for ten years and an a retired teacher. I see your concerns especially if your husband ends up in a care facility and much of your funds being taken away. There is no Insurance policy big enough to cover some of those expenses. Elder lawyers like doctors can share some similarities with their advice for: nursing home solutions. And some difference advice. You may want to Google to better Inform yourself. Emotionally I feel your frustrations and exhaustion. You are important!. Dont beat yourself up. Your husband's original personality may be clouded by his Illness. Like he is there, but not which can be so hard. Choose your battles. Give yourself peace by forgiving him which is so hard to do, but the peace will go to you. I'm sending this with my care and peace.⚘
I feel for you and I’m sending positive thoughts your way.
I have a preschooler and it’s a lot of work. Having 3 small children is a lot of work at the best of times.
Can YOU get a break? I realize your husband is the one with PD but caregiver fatigue is a big deal. Maybe family members or friends could step in and give you some time to yourself. Sometimes just being able to walk around Target by yourself can feel like a little holiday.
My Mom has PD and lately she’s been aggressive and paranoid. It’s hard to be the one who is always at fault.
Anyway I just wanted to reach out to show you support and let you know that you’re not alone. Best wishes from one Mom of threenagers to another 😉
That is certainly a terrible load to bear - you shouldn’t have to withstand such stress.
I wonder whether you could try a Ketosis Diet on him? A PWP called Colin Potter reversed his Parkinson’s Disease by going low carb, high fat and although I’m only a fortnight into it, I am pretty sure it’s working for me. The last 2 days are the first zero drug days since my diagnosis 7 years ago - and I’m barely shaking:). Although I first noticed the tremor in 2009, I’ve had several of the symptoms since I was a teenager i.e. 50 years ago. I think my addiction to exercise is what delayed the progression. I’m presuming that you buy all the food so just read up the foods with carbs (that’s nearly all of them!) and just go for high fat and moderate protein. It will be easier if you are on the same diet too because you’ll feel better and there won’t be any way for him to access carbs. Takes around 3 days to get into ketosis - you can buy ketostix for about $5 for 50 to check.
I wish you the very best of luck - keep us posted!
I have no idea how you are coping with all this. You are stronger than me. I am living in a similar situation but not with triplets!!! I am sure that they will bring you great comfort in time. My prayers are with you.
I’m seeing better days ahead much less dyskinesia almost non existent bradykinesia or cramping and all thanks to Dr C and his team including everyone here. Love you all 😊 Get in touch with him asap.
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Just a bit of advice please 
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