So, if I am understanding this PD thing correctly. To be a good wife to my husband I need to go without sex for the next 20-40 years. Never socialize with any friends...unless I do this on my own, so basically function as a single person. Never bother him with anything stressful (most of my life experiences). Work twice as much to make up for lost wages and exhaust myself by doing this. Become a shitty mother because I am doing above. Right?
The Good Wife: So, if I am understanding... - Cure Parkinson's
The Good Wife
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TheGimba
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My husband opted for a penile implant so we could continue to have a sex life. I suggest you find a caregiver support group for PD caregivers. I do not know anything about you or your spouse to give you specifics.
No two PD people are exactly alike. Does he have a Movement Disorder Specialist? When was he diagnosed? Please try to learn as much as you can about PD. Parkinson.org has free information available
An implant, he must be a saint. Mine wouldn't even consider such an intrusion. He is content just the way he is. Basically, my problem. I think I know to much about PD at this point. I'm sick of it.
sounds like he has severe depression and it should be addressed with his doctor
He is not depressed. I am. I totally understand depression, sadness, grief, sleep issues, eating issues, regret. My husband says he feels nothing. He doesn't feel excited, sad, happy, just kind of nothing. This is different from depression. I have read numerous articles about this. Few "get" apathy versus depression, which is my biggest problem. I can't talk to anyone about this. He went on anti depressants and never felt worse...different kinds. Says he is not depressed at all. He lacks motivation...He is apathetic, which means, you simply do not give a shit and I am struggling to live with someone who doesn't give a rats ass about anything. It is very challenging. But I know his brain isn't working right, because when I met him he had so much interest in the smallest things in life. I fell in love with that/him.
Try to approach him as you did before. Try to hold his hand, hug and kiss him. You might find that he needs you to bring it (affection) out of him. If you can’t do this, then you you’re making a choice not to try. At least he has an excuse. It’s not his choice, it’s the disease.
Yes, I have the same problem with my hubby. Difficult isn’t it. The only thing he wants to do is play bridge endlessly.
Apathy is awful and just as you describe. I have it, and it really robs you of enjoyment of anything, you seem normal mentally but have completely flat affect and only appreciate things intellectually rather than really feeling them. I have quite considerable pain and really do not react to it the way I once did, which is in some ways a blessing but not in other ways. I do not have any andwers to this except to do things I really like, but even those often wind up being more about thinking about it than doung ut. I believe it is sort of related to the physical freezing some people with PD get, and the whole thing about initiating anything, sort of a block to getting past a first response to something. As .i said I have no answers, but .i do know that I AM feeling the things I ought to feel somewhere in my being but am unable to take it further. My feeling is that your partner will still have deeply help feelings but the ones that are closer to the surace and reactive are not happening or only rarely occur. There isn't really a vocabulary for this but I call unput output problems, every thing goes in but very little comes out. It is NOT a psychological problem, it is a brain transmission thing. .try and find different ways to do things, I still feel pleasure just differently, and your partner might be like this too. Try and recreate sime of the magic, be enthused yourself, I find being in nature the thing that has remained of all things, if I can get out it really helps because really then the complexity of things is hard to not be with. My best to you and your partner, in having this difficult stuff to deal with, You obviously care, and I would like to bet he does too.
Thank you for your thoughts, I appreciate the feedback.
Did you try B1 yet?
Aren’t there apathy meds?
You're getting some bad information. I've had PD for over 10 years. Still have sex 2-3 times a week, socialize with friends and function well. Is your husband on any medication and does he exercise? He has to be proactive.
I agree and likewise. I was diagnosed four years ago maintain an active sex life and social life, and exercise daily. These activities are important for anyone to maintain health, especially people with Parkinson's.
I also continue to engage in income producing activity.
Get your husband on high-dose thiamine if he is not already.
To be honest...all you parkies on here sound amazing. My husband googled Parkinson's once nine years ago and hasn't really mentioned it since. You guys care, you feel, you try, he doesn't, or can't???. Not hopeful but will try thiamine, maybe I'll give him to whole bottle. 
With all due respect, (and I do love your posts), just because you can get it up does not mean that all Parkinson's men can. I think it is a pretty big problem. Besides you're a big grizzly bear.
As we age, maintaining an active sex life takes care and feeding, unlike when we were hot teenagers. For men adequate testosterone levels are important for having sex drive and drive in general. It may be that your husband's listlessness is due to low testosterone - I think would be worthwhile to check it.
That said, adequate testosterone levels are not all it takes to be able to get it up. Propionyl-l-carnitine combined with acetyl-l-carnitine have been shown in a clinical study to improve erectile function. I take these and they seem to help. Also something known as "horny goat weed" helps when an extra boost is needed. Finally, if the foregoing is not enough Cialis will do the trick. A man has got to be committed if he wants to be sure to keep a woman satisfied.
There is an additional dimension of sexuality well worth mention. The practice of Chigong, also spelled Qigong, is about the cultivation of the subtle energy called Chi. As a practitioner of Chigong, I can tell you that the feeling of sexual arousal is nothing but Chi, with the extra added spice of interpersonal romance. Chigong is about the cultivation of Chi throughout the entire body. It feels fabulous just as it is. When combined with sexuality, it becomes an earthshaking kundalini experience. My Chigong story is here: healthunlocked.com/parkinso...
I'm 50 years old. I'm prescribed sildenafil, but only use it occasionally because the Mucuna pruriens and other herbs I use aid in stamina, vigor and desire and they truly address a host of other symptoms that come with Parkinson's. You should get him on them. Look at Silvertrov and my posts, I recommend starting with a few like Tribulis terestris, mp, horny goat weed as mentioned above by park bear etc.
He is NOT proactive and I can't do a f_____g thing about it. Some PD sufferers also have apathy. This basically means that you don't give a shit, and there is no cure.
We all have apathy, but it's just one of the monsters we have to fight against. Don't give up, you're doing the right thing by yelling for help. Take whatever you could use from here and go with it as you see useful.
I don't know how long ago your husband was diagnosed, but I fully understand how scary this diagnosis is for BOTH you and your husband. All I know for sure is that you were smart to join this forum. I read posts daily and am learning a lot about exercise, diet, vitamins, supplements, clinical trials and medication. This forum has given me inspiration, encouragement, and hope. My wife and are not alone and we will deal with this together and with positivity and optimism. None of us are happy to be dealing with this, but as with almost everything in life, if you look for the good, you will find it.
Best wishes to you and your husband. You were brave to express your deepest fears. I hope you and your husband can channel that emotion in a positive direction. There's a lot you can both do to delay or possibly stop the progression of PD. You've come to the right place to learn how.
Take care,
Jim
I am no longer scared. Nine years in, I'm simply fed up. What a truly miserable existence for all of my family.
Is there a Caregiver Support Group near you? I facilitate one and my participants come expecting nothing but walk out feeling so much better. I wish I could reach out and give you a hug but a cyber hug is all I can do.
I feel your frustration and resentment and you need to "talk" to someone before you have a major breakdown. Even if you cannot change your situation, you need to find coping strategies to help you. Caregiving is very hard (I've been there) and you do not need to go it alone.
Showing your children how much you love their father no matter what is being a wonderful mother and truly teaching them life lessons that are invaluable! It’s not just his cross to carry it has been given to both of you! It doesn’t mean it’s easy, but I do believe these difficult situations in life can draw us closer if you remain a team. I’m sure my husband wishes I didn’t have PD, life would be easier in many ways but thankfully Ive noticed a softening of him in recent months and his kindness goes a long way in helping me feel physically and emotionally strong. It seems we appreciate each other more. Life doesn’t have to be horrible, but it requires good communication, outside help if you need a break, and a lot of prayer. Counseling can maybe help you too. Why does it have to be a marriage without intimacy? Its a sensitive topic and I’m not a man but could medication help him? I hope your husband doesn’t realize how you feel, would you rather trade places with him? The best thing you can do for him and your children is to love him unconditionally. Love changes everything 🌸💕
This is all one sided. He gets to not exercise, eat terrible, sleep for days, not socialize, not provide any comfort or intimacy and not go to regular doctor visits, basically do nothing to make the situation better. He has apathy which I think is a "ticket to ride free" of all responsibility because he can't motivate himself because his brain won't let him. He has brain damage!!!
I’m sorry it sounds very complicated, he sounds like he’s not trying at all which would certainly be frustrating. Maybe the Dr needs to be more involved and he needs to discuss ways he can help himself improve. I hope your situation gets better.
"He has brain damage!!!"
Exactly, that's called PD. 
You are not alone. I am the wife of a PWP, and although my husband's symptoms are similar to your husband's, I love him still after 46 years of marriage, and I am doing everything I possibly can to help him deal with his PD. He is the same person you married, keep thinking of all the good times you had in the past. My husband was in denial for several months and only recently has come to terms with his condition. That took a lot of time and effort on my part and at times I was ready to give it up and walk away, but LOVE endures!
He does have brain damage!!!, I need to repeat this every day. I guess I get confused when all my friends tell me to leave him, he's a loser, he showed some aggression and paranoid confusion once (super scary, friends told me to get out) even the neurologists don't seem to have much empathy. His GP told him to find a new doctor because he doesn't visit enough. So the medical community is rejecting him because he has a horrible disease that impairs his ability to "care". Just when I "get it", no one else does, and then I feel absolutely nuts!
We had five good years and he has been pretty sick for nine. I'm starting to forget who he was. The kids don't remember him, we live in a new, really shitty "normal". Sadly we lived with his mom for the first five years, she has Parkinsons! ughhhghghg!, watched her deteriorate for five years, broke her shoulder and then both hips. The same month she went into a nursing home my husband's tremor started. What are the odds? Neuro's says, it is not hereditary. I don't believe them. Worried sick for my kids.
So I'm in year 14 of my sentence. It's not how bad it is that gets me it's how long it will be bad I think. He is only 55. I can't picture the next twenty years. What about a short parole for good behavior? I miss life. Twenty years without dinner parties, movies with a friend, family and holidays and Christmas dinner, weddings, trips, everything. I miss complaining about meaningless things. I miss emotion. I miss laughing. I miss him.
Could some of the symptoms be caused by entacapone ? Could you find a sympathetic doctor or a nurse and talk to them about the drugs? Do not do anything without a doctor's supervision please.
I know the feeling! I miss him, too. It is heart breaking but I strongly believe that his B1 injections have been helping him (and me) a lot!
You have talked about Dementia with Lewy Bodies. Symptoms are: falling, hallucinations, very intelligent one day but not so the next. Has he exhibited such symptoms?
He has balance problems but doesn't fall, yet. Only once he sounded kind of paranoid, accused me of stealing his money (that he doesn't have) very odd, but no all out hallucinations like his mom. He is very intelligent one day but not the next! This is what is really confusing. The fluctuating cognition. One day he is an IT specialist helping me, the next he can't do anything. I worry about trying new drugs if he does have Lewybody...The fewer drugs he is on the better he seems to cope. I think this is why I feel truly nuts. The fluctuations, because I don't know what to expect and what to expect of him on any given day. He can fix the sink, sometimes. Drip, Drip, Drip....
Intelligence fluctuation could mean Lewy Bodies dementia. Has he had any kind of imaging tests? C/L doesn't help if it is Lewy Bodies. I have read/searched extensively on the subject. My husband doesn't have Lewy Bodies, he has Parkinson's as diagnosed by a Mayo neurologist.
I know it's very hard to accept it.
Ya, I miss my husband too. I think we all do. I went to a counselor about my husband's cognition and how to deal with it. The first thing she said was you have 2 options stay or leave. We all deal with PD any way we can. Your choice. I choose to stay, and try to be more compassionate. I have also gone on anti-depressants for me. There is a lot of anger in what you are posting. I was told anger is a form of depression. I would yell and scream at him because I was so angry. The antidepressant helped a lot with that
What finally did it for me was when we had a incontinent issue at 3 am. I realised then how bad he would feel, how embarrassed if he was himself again. By the way when this happened my husband acted like it was a normal thing. He has been seeing a urologist for years for other issues and they always ask " any incontancy. He always says no. I thought he was just embarrassed to admit it but he believed he is fine. One of the criteria for PWPD to have cognitive problems is for them to never admit it is a problem even though other people see it. You can't change him, and being angry doesn't help. You can only change yourself. Get some help, I did and I am glad I did.
Contact the Fox foundation and get them to send you the spit tubes for DNA analysis. For Your husband and kids, to see if there is a genetic mutation in his line or not. I did and am waiting the results.
Also, because there are studies that say pwp can be low in certain nutrients, get him checked for aneamia, all,p kinds, faolate and b12 deficiency, and vit d deficiency. if they are close to the low borderline talk to your doctor about supplementing.
You have said many things here I agree with!
It is normal to feel like this and the future can seem daunting, especially when you are raising a family. It is a lot of pressure being the support person. You have done one thing right, finding this forum so that you will not walk alone. Research Dr Costantini and his Thiamine treatment. It will be a lifesaver for you and your husband.
I have no idea where you got that impression. If this PD thing is new to you both, then this is a reaction that some have. It doesn’t have to be that way for the next 20/40 years at all. Check out the forum. Talk to doctors, and medicine can help with many symptoms, to help lead a more ‘normal’ life! My wife and I have made some adjustments, but basically we try to keep a relatively normal routine. I have moderate progressive PD, and Ataxia, and have had it for a number of years.
Maybe it’s because my husband isn’t a caretaker, I still take care of everything and the kids. I can understand being concerned about the future but I don’t think a loving spouse reacts this way. I’ve watched my mother lovingly take care of my dying father and my sister took care of her sick husband for many years with kids never did I hear this kind of talk. This post is truly sad and sounds very selfish to me. I hope for her husbands sake she gets the help she needs. This kind of attitude could truly worsen her husbands condition. Like it or not it is a mind /body disease. Hopefully she’s just having a bad day, we’ve all had those.
This is not new. This has been going on for nine years and clearly I have had enough. He doesn't want to talk to doctors, seek out new medical treatments, exercise, eat well, none of it. He has apathy, so it is a little like living with a plant. He has opted out of most of life. Doesn't do chores, etc. And no he is not depressed. He tells me this often. He is fine. Antidepressants put him to sleep and almost cost him his job. So, I can either suck it up OR break up my family and let kids suffer the consequences. Nice options! Parkinson's sucks!!!
So he’s still working, with all the symptoms you described? If so, he is probably using all the energy that he has to hang onto his job. Unfortunately, nothing may be left over for being the spouse and father that his family deserves. Men in my experience prioritize their breadwinner role over everything else. It’s extremely sad that you have lost the support, intimacy, and former personality that he had before PD. Sadly, if you split up things might be even worse economically, if he lacks the comfort of a family he could spiral down and lose his job. Please think things through and consider the suggestions from everyone here, and do what is right for you and try to get away some with the help of family and friends. You need some brightness and cheer!
Apathy is a not often talked about and huge problem for the 'other person' suffering from Parkinsons. No amount of growling or angry words changes the apathetic one. I feel your pain. Feel free to vent here and no one will judge you. We, the supporters are the silent able sufferers that get landed more on our plate than we think we can manage.
Try to encourage hubby to try B1/Thiamine. You can find all the info on this forum. Apathy with be gone and you will be happier. How old are your kids?
Thank you. Sounds like I have already been judged by others, but I get it. I sound really bad. I am not having a bad day, I am having a bad nine years. I've tried so many things, I guess I'm just really discouraged. He already takes B vitamins but will get high dose I guess, not hopeful. My kids are young, under 13.
Yes it is a terrible disease , maybe you could talk to him about B1 and how much it has helped many on this forum. If you told him some of the success stories maybe he would have hope again, it seems like he’s giving up.
I apologize I certainly don’t judge you and you certainly have every right to be angry. Your post didn’t tell the full story. I do think there are many on here that could help you out of the darkness and into the light. You wouldn’t be on this forum if you didn’t love him a great deal. He needs to own his illness and work with you, I can understand you are at your wits end. Anyone would be! I really think that looking into dr. Constantine’s protocol could be life changing for your entire family. He must be willing to put the work in and he should be also on this forum trying to make the best life for his family. Please forgive me I didn’t understand the situation you’ve been living in. Reading the post it sounded like he was the victim and it made you sound unloving.Clearly he’s the one who isn’t trying , now I get the picture! Apathy is no excuse for his behavior!
No worries, but the medical papers that I read suggest that apathy is a medical condition that some Parkinson's patients experience that is not improved with antidepressants. But how do you get help for apathy when you don't care that you have it, get me??? He will not be sitting in a doctor's office explaining to them that he doesn't care about anything, because he doesn't care! I know that Parkinson's, depending on where the brain damage occurs, can impact impulse control, motivation, and apathy seems to be on that spectrum. This is why I am making myself nuts. If it is a medical condition that cannot be cured I need to be a loving, forgiving wife, that does the laundry, dishes, pays the bills, child care, etc (I just burned dinner by the way, ughgh!) but if he has some control over this (which everyone suggests) than I need to be angry, and you caught me on an angry day when my sink is leaking and my husband could fix it in 15 minutes if he was motivated to do so. Sorry!
Luck of motivation is another PD symptom as well as apathy, I know first hand. . .
Another thought just occurred, don't give up the activities you could have at home and outside together, like entertaining, having friends round, keep things lively if it is too much he will find a quiet spot but if not others will be there to help stimulate and engage him. That will help you and the rest of your family, too.
But if your brain is broken and it causes extreme apathy, how can we expect anyone to snap out of it? How can I blame him? Deep down I fell like he is just really sick but then everyone else tells me he needs to "own" this disease and help himself. I just get so confused. His presenting symptoms were brain fog, sleepiness before the tremor, maybe he's got Lewybody? I don't know. It feels like he just doesn't have the mental ability to love, to care, to connect.
I wish I knew more about Apathy but I really don’t. I know high dose thiamine can improve overall mood, energy, and I’d like to think if he began to see improvements in his physical condition it might snowball into improved mood , less apathy etc . It’s worth a try. Everyday people keep posting new success stories. It might get him living instead of just existing. Is there someone he would be willing to listen to, a close family member or friend that could open his eyes that things need to change and things can’t continue the way they are.
It’s very frustrating when husbands won’t try to help themselves and would rather just complain about their issues and assume you will be there for them.
He really does sound depressed- even if he says he’s not. It takes some people a while to find the right anti depressant.
I think you should try him on mannitol. He doesn’t even need to get off his butt and go to the dr - you can order it on line.
Alternatively you could leave him. You have a right to a happy life and it doesn’t sound like this one is making anyone happy. I’m sure people will try to guilt trip you, but it’s your life and it’s the only one you’ll get.
Hi, thanks for this note. It means a lot. I had a recent breast cancer "scare", I'm already on antidepressants because I couldn't stop crying, and now I guess I am feeling selfish and worrying about my health and how I am interacting with my kids. The focus has been on him for so long, everyone else is suffering. I don't want my kids to be from a broken home, but I think they already are in one.
Mannitol, worth a try. Thank you.
I agree with what Astra7 said about you having the right to a happy life. It sounds like you are essentially a single parent already. Are you frustrated enough to leave him? if so, does he know this?
This would create new stress, mainly financial, but of course I think about it. I used to have a sense of humor.
I used to call myself a married single parent.
If he is unwilling to even try, and you have given him your all, then you have done all that you can, and you deserve to be happy. Time to start planning your exit strategy. Maybe then he will take some action. The point is he doesn't even try. He is using his condition for secondary gain.. I went through apathy and i took action to get my head right. I saw how it was hurting my family and i didn't want to see that happen. And although I surely aint no porn star, my wife's satisfaction is important to me. I wish you all the best
Hi, what kind of "action" did you take?
I am really sad to read your posts and i wish there was more we could say to give you encouragement.
You are without hope, everything seems hopeless and you feel despair. This is a truly bad place to be and totally demoralising for you.
Is there any chance of finding a counsellor you could both go to together ? We all need to be accountable for our actions, choices, decisions and behaviour. You are not in a marriage but a prison.
PWP still have responsibilities just like everyone else.
Wishing you the best. Stay strong.
Hi, great idea, he won't go. I would go but then I worry about kids and taking time for myself makes me feel guilty if I leave them. I think that I need to just go out more with kids and give them more of a life. He doesn't care if we are there or we aren't.
Great idea, even if you don't have money for going out there are free things to do. We used to go to the nature center and walk the trails, hay a hose and sprinkler where you join the kids running through it. We used to play keep the balloon in the air, and of course there is the sheet to drape over the chairs and make into a fort.
Hi, do you have access to rock steady boxing for your husband? It is an exclusive exercise program for Parkinson's people. If you could possibly get him to go he would get companionship of other Parky's and of course much-needed exercise. That would improve his whole outlook on life. Another suggestion, what medication is he on?
This is the seond time in a week that I've heard a story of a male PWP basically giving up on his life in a way that is driving his partner crazy. So I'm going to give you the same advice as I gave to the other lady. Sit your husband down and tell him in simple direct language that until he can start taking some resonsibility for his condition (it is his condition after all) and open some constructive dialogue with you about better managemnt of his symptoms you will make sure that the kid's needs are all met, but he will have to fend for hmself. How far you want to take this is up to you. PD is an absoute prick of a condition, but that is no excuse for making the people who love you and on whom you increasingly depend a double misery. I feel for you both. All the best Robson
I know, but when I am having an objective day...I really think that he might have the beginning stages of dementia at 55! They say apathy is a precursor to dementia. Now that scares me!!! It kind of makes sense. Dopamine impacts your ability to be motivated...too much can make you impulsive...not enough, flat. He just wasn't anything like this before. He is 55 going on 80. He says he can't initiate himself to do anything, he can't plan, organize...his executive functioning is gone. Do I leave someone for having dementia? My internal struggle continues. Thank you for the kind words!
I understand your frustration. In our case, we changed neurologists due to a location move. New doc told my husband to stop taking all his PD meds after seeing him twice. That scared me to death since I was the one going home with him. The result was not pretty. HOWEVER, my husband did not take long to realize he really had PD, needed a doc and meds! Seems it was a wake up call. I AM NOT SUGGESTING ANYONE TRY THIS WITHOUT MEDICAL SUPERVISION! I am only relating our story.
Meds were reintroduced gradually and now he is on half of the carb/levodopa that he was on before and I had my husband back after 6 years! He was engaged, saw chores that need to be done and showed an interest in something besides television. The sex didnt return but he tells me he loves me now, so there’s hope.
We had a big party (who wouln’t celebrate?) two weeks ago. He helped with all of it. The down side to the party that I never thought of beforehand was the stress/anxiety it caused him. It was a major step backward. He became somewhat disengaged once again, although he denies that, and still has not returned to the level just prior to the party but I’m hoping for that too. It was an eye opener for me to watch how stress affects PD so profoundly.
Perhaps your husband deals with more stress at work than his brain can process by the time he returns home.
Apathy appears to be a comfortable place for them and a choice I thought my husband was making, which was a huge source of frustration for me. Yet, when I saw the difference in my husband’s personality when his meds were cut back, it was a wake up call for me as well. He truly was trapped in an apathetic body which in his case was caused more by the pharmaceuticals than the disease. I learned it was not his conscious choice. Find a neurologist who specializes in motion disorders, make an appointment and accompany your husband on the visit including into the examining room. Talk to the doc about the issues you are having as a couple. There may be more help and a brighter future than you currently envision.
TheGimba• in reply to
Thank you for sharing your story, very helpful. I wish I had a picture of his brain, so I knew exactly where it was impacted...and what part of the brain causes what issues, so that I could show our kids. I would put it on my fridge. In Canada they don't bother with such tests, but it would help me to understand his challenges better. From a practical perspective it looks like this. My sink is leaking, my husband is home, available and super mechanical but won't fix it. I determine if I should call a plumber, pay $300.00 or leave the tap dripping until he "comes around" ughghhghghghghghg! It is still dripping.
• in reply toTheGimba
Waiting for him to “come around” will only be a source of frustration for you. Either watch a utube video and figure the leak out yourself or “call a man”. You are in charge. Just figure you have one more child and move on to help yourself. Don’t expect him to change, you can not “motivate” him any longer. He does not have the same brain he did before, and it is not his fault. It is a disease, not a choice. It is not a conscious decision on his part. Stop believing he is “against” you or about to jump up to help. You are strong and your kids need to see strength, not anger. Pick up the pieces, find a reasonably priced handyman and find some family stability for your kids. They know their dad is ill. They need to know their Mom is capable of caring for everyone. That’s all they care about now.
After a long life, and a longer story, my kids say they think I am the strongest woman they have ever known. That’s the kind of a positive you want them to carry into adulthood. Now get yourself a legal pad and a pen and write everything down that you need to unload from your head: the anger, the frustration, the hate of the disease. Trust me. Write every night and be sure you tuck it somewhere that NO ONE will ever find but you. Now go kill tomorrow and feel strong!
TheGimba• in reply to
Got it! but it sounds reeeeally hard. I was never super mom even before all this came about. I have suffered with depression since my teens and have to really look after myself to maintain my health. I don't know if I'm the right candidate for this job. I really don't feel qualified but will muddle through the best that I can. I did buy a journal a few weeks ago. I hope no one ever finds it. Thank you for taking the time to write to me. I really appreciate it.
Wow - This hits a cord as I feel the same as your husband and think my wife secretly feels the same as you!
"They don't give a shit that they don't give a shit" is so well put! The only difference between myself and your husband (at the moment) is i am fully aware of the damage I will cause if I give up, so I pretend to have feelings and motivation and try to do a few things around the place and sometimes take a blue pill to help with the intimacy side of things, although it's not the same for me, I think it helps her know I still love her (I think). Apathy is the most terrible feeling ever and I have considered leaving my family for their sake so they can get on with their lives with somebody that has feelings motivation and laughter, but I think It would cause more harm than good at the moment as I am in the early stages and can put on a good act most of the time and am still able to work full time to pay the bills, although I'm not sure for how long. I assume he has done all this in the early years and the medication has stopped working and he has lost any slight thoughts of giving a shit he may have had. As said by others here, if he will not let you drag him to the Dr where you can speak for him to say this is causing a major problem and try to get more medication or if he doesn't try at least something like Thiamine then he deserves the consequences. |My father had PD and now I can see how difficult it was for him and us children who couldn't understand why he had no motivation and my mum had to decide on everything, even what he would wear. Having read your posts I realise how even more difficult it was for her and how brave she was to have coped, only in the last few years did she become outwardly angry at times, but I think she knew he would have done the same for her if it was the other way round. If your husband has really given up maybe if you asked him he may want to move into some kind of semi assisted housing nearby so the kids can go and see him and he can stop feeling the guilt he is most probably feeling. I have told my other half that if she thinks at anytime it would be better if I moved out she must tell me and I would understand. Obviously I would prefer not to, but sometimes I feel so guilty, as she didn't sign up for this.
I still live in hope of a cure or something to make the apathy go away and I am so pleased for this forum where people can make their feeling heard and share ideas. I am now also just starting Thiamine and am very hopeful. I'm not sure my post will help you but yours helped me. Good luck. Fergus
This made me cry. But the fact that you can even write that means you can still care, feel and understand. I feel like my husband can't love us sometimes...His brain won't let him love. I don't want to kick him out, but I'm having trouble living with him. The kids are asking why he gets to do nothing and they have to do chores.
Sorry I have only just found this post again - I T is not my strong point! It made me cry writing my post thinking of the pain my parents went through but I didn't want to make you cry - sorry! I am not sure I still have all those things you mention but I know if I do not pretend to feel them my family and myself will suffer so I can understand and I care but if I'm honest I do not have feelings of true love for anything or anybody. It's horrible. Your husband probably went through the same as me and now the medication has even taken away his caring and understanding so you have to sit the kids down and tell them the same thing you say about a broken arm - you can't see a broken brain - they will understand and want to happily do the chores. Once I got it I found it a pleasure talking over the male roles in the house but I'm not sure how old your kids are or male or female. My mum was also no super mum before she had to deal with this terrible thing but she muddled through eventually becoming a super mum with status to us children when we grew older having understood what she dealt with. After my dad passed away she felt relief I'm sure and had a good 10 years before she ended up with dementia but as she had looked after our dad best she could we children did the same for her without even thinking about it. The feeling of apathy in my opinion is the worst but least talked about symptom of PD. I managed to get my dopamine levels up somehow with supplements for several periods before realising my problem and I can't explain the wonderful feelings - love, connection, motivation, executive function, motivation, sexual desire, contentment, focus, confidence, energy, humour, just to mention a few all came flooding back. It was like something turned my brain back on and that was without medication, just supplements so I am ever hopeful to do it again without. I have to say two weeks on Thiamine I am feeling some improvement - my energy has increased my mood is better but best of all my fingers have feeling again and are warm instead of cold and the last few days I woke up being able to move them without a massage. I am not saying that anything is totally amazing yet but I can defiantly say there's a difference. In my opinion you already have super mum status as you are coping for 9 years and reaching out for help and not giving up without a fight. If anybody looks at in depth research on thiamine deficiency the symptoms are so similar to parkinsons so in my mind it's possible that an increase will help. I just hope somebody will find why we don't absorb enough instead of having to flood ourselves with it, as it smells terrible when I wee! If he will not let you steer him to try new medications or carry out research then maybe you should consider your exit stratagy albeit not easy it may be right for you and the kids. Good luck. Fergle
Thank you for sharing your thoughts. My husband doesn't talk about his PD much. He's been in bed for 12 hours, but I always let him sleep, hoping it will help him. We live in Canada. We waited two years to see a neurologist, when we did, they had the bed side manner of an after dinner mint, offered no helpful advice or alternative options to the standard regimen, didn't mention that his agonist could cause massive compulsive issues which could alter our lives, and did. He still has a few "on" times. He managed to get another part time job during his last "on" episode, which he can't possibly manage. My next challenge, how to get him out of that one. Oh he also consistently has "on" episodes when seeing neurologist, which I swear is the reason why he doesn't receive help. If they only knew his struggle. I even planned his med dose so that he would be "off" at neurologists, he was "on" good to go, so weird. They asked when his last dose was, proving that he is doing really well. I think it might prove that he has Lewy Body, but who am I. He is not honest or can't really be objective about how he is doing. When I speak he argues with me to prove me wrong in front of the neurologist when he is "on", super helpful! Is this pride, denial? Whatever it is, it is killing us. I stopped going with him, hoping that he might be more open without me.
Apathy is definitely a PD symptom. I have it. When I am properly medicated it is reduced significantly. I take Sinemet, Selegiline in sufficient quantity to have most of my symptoms under control. I started B1 6 weeks ago and it further reduced apathy. Being properly medicated is essential to tackle apathy.
Thank you. Neuro's are even telling him to get it together. It is like they don't understand apathy either. If you had a broken leg would people tell you to go for a run? He was the energizer bunny when we met, full of life. I miss him. Will try your suggestions. Thank you
Hi TheGimba,
Your post reminds me of a post by 3Fishies a few months back (see link below). It might be worth a read, as some of the comments in that post might be of interest/benefit to you.
Jeff
Who is this Dr. everyone is mentioning and why would he/she do anything for free? or is there money involved?
Dr Costantini is the patron saint of pd and brought thiamine therapy to the world...FOR FREE! And it friggin WORKS! That's what all the hype is about.
Hmmmmmm
Write to him asap and please translate your email to Italian using Google translate. Its very easy but he only understands Italian. He takes care of all of us on this site for no charge. Just tell him the situation, current meds, age, height, weight, and describe his condition. He will reply promptly with a dose of thiamine to try. Thiamin Usually gets results in about 2 months. Please keep us posted and follow up
May I add, "Send him walking, reading, and pull test video, too."
Hmmmm...my friend is Italian.
• in reply toTheGimba
TheGimba,
To answer all of your questions about the doctor in question as well as any questions you may have about his protocol and what it can do for PWPs as well as costs and what is needed, read the following link. It will answer all of this and much more!
healthunlocked.com/parkinso...
Good luck!
Art
TheGimba• in reply to
Thank you...will do a thorough read when I have more time but sounds interesting.
Does he have an email address that you could share?
The right solution you stumble on soon may have you thinking in the near future “wow, I can’t believe we went thru such a bad period!” Don’t quit searching!
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