I need to vent! Parkinson's has cost me my husband but it's been a long and hard journey to get anyone to listen to me!

My husband, now 58, was diagnosed with PD about 10 years ago, although he was showing symptoms at least 10 years before. He had to retire 2 years ago.

Besides the physical effects, he has lost any ability to show empathy or caring towards others. He admits he cannot see how having PD affects our children or me, and does not ever express or show any feelings and/or affection.

I have been fighting to get someone to listen to me about this for years, even before the PD was diagnosed, and have even been told by one doctor that it was a personality clash! He has been referred for counselling for depression but has never had more than one session. I know he is not depressed but is emotionally dysfunctional but the facts are so horrendous, I have not been believed.

Finally, after keeping a log of events showing his state of mind, strange behaviour, lack of emotion and unnatural re-actions, he was referred to a psychiatric team who actually listened to me and ordered an MRI scan, which has shown a mass in/around his brain. It is thought this has been growing very slowly for years but is not expected to be the reason for his lack of emotion. Further tests are to be done at a very specialist hospital, where I hope he will get some much needed help .

I was able to tell the doctor who decided we had a personality clash, about the mass and they are now asking for my husband to get CBT.

My husband shows no worry or any other feelings about having PD or the mass - I think he is lucky in this. As a couple, it is all too late for us, as I no longer love him as my husband - there is no relationship because relationships have to be two way and he has nothing to give.

I do care for and about him, but I feel trapped and am desperate to escape, but can't because he has mismanaged his finances so badly, I am having to work to pay our living expenses and sort out his debts.

OK - vent over! I do have wonderful adult children and an amazing support group of family and friends, so I get to laugh and smile a lot, but I truly do not know what to do!

Does anyone have a magic wand?

43 Replies

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  • When I was on a combination of PD drugs, that were not right for me, I had no feelings. I told my husband that I knew in my head that I loved him, but could not feel it. Meds were changed and I am doing much better.

    Praying thing get better for you both.

  • HI

    I hav ePSP and wonder if it affectdd my relaitonshiop with my (ex) husband

    i left him and am now divorced and we r friends now( i am livign iwhg my partner )

    and we do noe tspeak fo the item when we wer e so horribel iwth each other

    lol JIll

    :-)

  • Whatever has happened none of this is your fault but the fate of illness. i Hope you feel better now you have shared this with us it can only be good. Prayers as always for those afflicted by this cruel disease and also prayers that some of the medical professionals will really listen to what people afflicted are sayiny to them and take heed.xx take care.

  • Have you spoken to a doctor who actually listens,ask them to refer you to a counsellor and if you are having financial difficulties go to the citizens advise bureau.The counsellor will help with your feelings and believe me it does work and C.A.B are fantastic.Are you claiming everything you are entitled to as well as there are a lot of things you can get help with both in the home and financially.

    How about a respite break or a carer who could come in and give you a few hours break.

    Parkinsons UK have a helpline who can put you in touch with someone who has gone through something similar.

    Hope some of this helps,I know a lot of the above has helped me.

  • I am surprised no one would listen to you. When I go with my husband to his Movement Disorder Specialist, he will ask my husband questions and then look at me after he answers. Depending on the look on my face, he probes further to get the real info he needs. He recently put my husband on aricept and upped his zoloft and emotionally he is a bit better but he is also dysfunctional in mood and emotions at times. I feel for you and understand your post. It is very hard for caregivers also not just the person with PD.

  • This disease affects sufferers in all different ways. Before it took its evil grip, I was a serving Police Officer, tough as old boots, little sympathy for villains or the inept, intolerant of bad behaviour, fair but firm. Now I am much more tolerant, emotional and emphasize a lot with others, and often start crying without reason...People appear not to listen simply because they dont understand our condition, many are fearful and many hide. Thats`s life, only in the fullness time will the majority a better understanding of this ailment.

  • Thank to all of you for your responses and support. It is so wonderful knowing others are there

    to give you support and who really understand what is happening. I do feel more optimistic.

    I am now confident most of the doctors we are seeing do listen to me - it just took so long to find them.

    We have applied for DLA twice, failing both times. However, this could have been because of the report submitted by the PD doctors who have not listened to me. This might change with the new doctors we are seeing. I will post again - thank you all again.

  • hi

    iapplied for the DLA and was turned down but on applying post diagnosis with the suppor tof my conusltant and GP got it!

    the DLA is changing from next year so it woudl eb as well to get it nwo if you can!

    lol JIll

    ;-)

  • At the hospital where I am treated there is a psychiatrist that specializes in Parkinson's patients. She is part of my team of doctors. You may try and seek out such a doctor. Good luck.

  • I would have liked a husband with no emotions after the one I had. I'm sure I don't know the whole story. I hope you both get the support you need.

  • Hi Ceebs,

    I'm so sorry you are going through this. You mentioned that this was happening even before the PD. I'm going to say something that I've found a lot of people misunderstand, but please do not dismiss this: your husband may be a sociopath / psychopath. There is a HUGE misconception that sociopaths and psychopaths are all violent, or "crazy", or "psycho". On the contrary, the most dominating characteristic of sociopaths and psychopaths is their lack of empathy and they often come off as "charming" because of their manipulation skills. How that lack of empathy plays out in their behavior with vary from person to person. Please consider reading these books (in order of recommendation): The Sociopath Next Door by Martha Stout amazon.com/Sociopath-Next-D... ... and Without Conscience: The Disturbing World of the Psychopaths Among Us by Robert D. Hare PhD amazon.com/Without-Conscien...

    Trust me, if the "bulb" goes on while you are reading these books, it will bring so much peace and understanding to you. It will all "make sense" and you'll be able to heal.

    Take care..

  • I shall order the books tonight, although I'll read them with some trepidation, as they may give answers I might no like.

    Thank you for taking the time to write and for your sentiments.

  • Whatever the answer may be, may finding it bring you some peace. Your frustration and pain and hurt is what struck me about your post. Please have faith that YOU have acted in a caring and compassionate manner and that's all that matters. You sound like you have done so much already, but sometimes there is nothing left for you to do.

  • I'm still so amazed at the kindness shown to me by you and so many others here.

    I have read the books you suggested and my husband does seem to fit the profile. One of the new doctors we have been seeing, and who telephones me to see how everything is, has also said it can be explained by the lack of dopermine preventing signals getting through to the Fronto Temporal Lobar area.

    We are now waiting for the results of the MRI scan to find the best way to treat the mass.

    Having read the books, I have now identified people I know who definitely fit the criteria.

  • Ceebs, you sound like a wonderfully compassionate person. Do not forget this. Your husband is very lucky to have your support. May you always find your way. I wish peace of mind and happiness.

  • Your husband is better off without you. Being the spouse of someone with PD is no cake walk. I'm pretty sure there is a reason "no one listned" to you. My wife has endured hell because of my PD (dx at 40yo at the peak of my professional career) but always say's she took a vow, for better or worse.............

  • Your wife is one very lucky lady! You can obviously show her you care and appreciate her. I wish my my husband had been able to show 5 seconds worth of love and/or affection towards our children or me in the last 6 years.

    I'm sorry you feel able to judge me without knowing me or experiencing my life - I know I would never be so arrogant to believe I can understand what someone else is experiencing, and would certainly never compare my experiences to another persons.

    Perhaps you would like to re-read my post. This time you may notice that my concerns have now been proved to be well founded and that I have found doctors who are listening, so my husband will hopefully get the medical treatment and help he needs, and which I have been trying to get for him for many years. All I have ever done is try to give my husband the best quality of life possible and have been proactive in helping him learn different ways to complete tasks as efficiently and as easily as possible.

    I do wonder why you put the following as you did in parentheses ( "no one listned"). You appear to be quoting me but I have not been able to find where you have apparently quoted me from.

    Perhaps you would also like to take the time to read the replies others have posted. They have given our kids and me such strength and comfort, for which we are so grateful and truly help us face another day.

    I do hope you and your wife continue to love and appreciate each other, and you always let each other know that you do care.

  • That was very cruel and way out of bounds!!! Ceebs is doing what all of us do on this website and that is venting WITHOUT fear of reprisals. Please use this website in the manner for which it was intended. We all need help at one point or another and I truely hope when you need us we will be there for you!!!

  • Well said

  • Love, Hugs, and Kisses work wonder. Do not give up on him. My wife has parkinson and even though we have been through many difficult times, by not giving up has worked wonders.

    Fisnerman1

  • I saw my neurologist yesterday and he feels I am doing so well on the combo of drugs he has rx'd, he has no intention of switching. Some people, however, go through hell on drugs and thank God there is now a solution for them. There is hope on the horizon - just have faith and know we are all routing for you.

  • Thank you all for giving your time to respond to my post, and for reminding me to have faith, keep hoping and be able to nearly be my usual very positive self.

    Even the one "negative" post from DBSEnhanced helped me be happy for them in that they are in a warm, loving and reciprocal relationship.

    If anyone ever needs support or a virtual hug, I'll be here.

  • I am glad Ceebs, that you did not let the post from DBSEnhanced get you down. He evidently doesn't realize that no one single person here has the right to judge you because there is not one single person here who has 'walked a mile in your moccasins'. You are in a very precarious situation and although I know not of a magic wand, I certainly do hurt for you. Too often all the attention is turned toward the one with the disease, but the family caretakers are affected too and help, concern and empathy should be offered in that direction also.

  • As a PWP I feel for you. What you are going through is I. I went through this myself and subjected my wife to some of the same torture. This torture was born out of my paranoia and I went so far as to report the woman I loved and who had laid everything on the line for me, to the Police. I tried to leave her twice but still she continued to fight to find the man she loved and who treated her like a queen. After a 3year fight her I am by her side. A very lucky man trying to understand my disease through the lense of people in love.

  • I am so sorry for what you are going thru, and it hurts when one individual sends a negeative response, but I believe he is not getting the point. I know this must be an extremely difficult time for you and I know that before you came on this site the pure (hell) you must have been going thru not knowing where to turn. I am very glad that someone finally listened to you. Having parkinson's is not easy for the patient nor is it easy for the one closest to you, your spouse or partner. Please be sure you give yourself some time away so you can keep yourself well. A caregiver is only as good as the one who takes time for themself. you can't do it all and from what I have read that is what you did. I commend you for all that you have been thru, but please don't be to hard on yourself for the feelings that have changed. My partner left me after 23 years, becasue they couldn't handle it, but fortunatly we have remained friends. Your husband hopefully will be grateful that he has someone who has stuck by his side, there are many of us who don't have that someone. we usually have to rely on sites like this to receive the comfort of strangers to get thru our darkest moments or we just suffer in silence. this disease effects whole households not just the patient. The one thing that has gotten me thru so much is I put my faith in God and I now try to let him guide me, and help me . I will keep you and your husband in my prayers that not only will the doctors find out exactly what his problems are , but that hopefully you will find the person who you once loved that you will be able to love him again. take care and hugs to you.

  • Thank you so much for taking the time to write. I'm very lucky to have amazing kids and friends, who all ensure I do get time to relax.

    He had another MRI yesterday so answers should be forthcoming soon. The comfort of strangers is so valuable, something to be treasured and passed on to others.

    I can't write more as this is being a particularly emotional day, so I'm heading into the garden to expend some energy on physical tasks, enjoy the view and the company of the birds.

    Thank you again - you truly have helped! I hope your kindness is reciprocated tenfold at least, which is no more than you deserve.

  • Thank you for the kind words, you got me in tears . good tears! My escape is photography. I love taking pictures of nature, which gives me peace. I wish many answers for you. Will pray that they are good answers. I am also glad that you have a wonderful support team also.

    take care .

  • Thank you again! Good tears are very cathartic, aren't they? I am now managing not to do my Trevi fountain impersonations, unless someone is too nice to me - one unexpected hug and I'm gone!

    I am definitely feeling stronger, due totally to the amazing support I have had from those around me and people like you. I hope you are well and enjoying the great outdoors. Has the DBS worked well for you?

    We are still waiting for follow-up appointments &, hopefully, some answers so we can start planning a course of action.

    I will never stop caring for my husband, and will never stop fighting to ensure he gets the best treatment and care possible. He will always be part of my life and our family life. He has started to talk about his lack of feelings and has admitted that, although he knows how upsetting it is for us, he doesn't feel anything. When he spends a week with his sister he admits he does not think about the kids and/or me at all. Now I am beginning to learn more about his condition, this is less painful than it was.

    I have learnt that to be able to try my hardest for him, I have to ensure I live for me too, and do the things that I enjoy so I "recharge my batteries".

    I also love wildlife photography, though I am very much a novice and very amateur photographer. My best shots are been more by fluke than judgement, although the results have thrilled me. I'm still trying to learn to operate my Nikon DLSR. (I take a shot on the "Auto" setting and then play around with the manual settings to see what happens... unfortunately the ones on the Auto setting tend to be the best).

    This is turning into a thesis - apologies! Writing is another hobby of mine.

    Take care, stay strong and thank you, again!

  • Hi! Glad you are feeling better, that's why I said you have to have time for yourself, so you can recharge your batteries. Your husband is probably friustrated because he has no emotions strange as that sounds. Hopefully you'll find out what is going on. Speaking of which have you heard anything?

    Oh don't worry about writing a thesis, I can do the same thing lol . I'm enjoying the company!

    Don't worrry about being a novice or amatuer photgraphy, I'm still in that catagory. I've just been (deeling dandley ?) in it for about 10 years. I'm just now in the last year taking it seriously. everything takes time, but the most important thing about taking pictures is? Enjoying what your taking pictures of and if you like it that's all that really matters. Any way if you would like you can write me at chomps44@aol.com and if you like I can send you some of the oictures I take, I love taking pictures of clouds and all things of nature.

    Well guess I should get going before you start reding my latest novel. LOL! Anyway take care and hope to hear from you.

    P.S. I also have a nikon dslr 5100

  • This computer is my escape. I can meet with friends while still being here for my husband. As someone else mentioned, the paranoia is frustrating and frightening. It is something I plan to bring up with his neuro. I am in this for the long haul as we will celebrate our 42nd anniversary on Wednesday.

  • I used to call it my magic wand, but do to the meds it's more like a wet noodle. LOL

  • Thank you for making me laugh, with you, not at you!

    Parkinson's UK sell a "Noodle" <http://shop.parkinsons.org.uk/product/noodle>

  • I say thank god for people like you Ceebs who help to look after us so well. I am thinking of you. xx

  • nang in there dnt get too pist off God has a special place fo you wait and seellll\

  • Hi Ceebs just checking in with you to see how things are going? Hope things are looking up for you.

  • I have learned that there is a major difference between depression and Parkinson's Apathy. The symtoms you describe is either on target to very near to Parkinson's Apathy. I am sorry to say that medications for depression does not treat apathy. Please speak with your provider and very important Google or search Parkinson's Apathy so that you can read, determine if the symtoms are the same so that you can have good conversation with your provider.

    Let us know how you are doing, as this is a very difficult part of the disease for the percentage of people this affects.

  • I know this post is 3 yrs old..but Ive been asking where the magic wand is too! I'm losing my best friend as we speak! Apathy..empathy..all fading..he wants to fix me and yet doesn't SEE his Parkinson's paranoia...lack of emotion...or sudden aggressive ..even violent backlashes as of recent..as being a problem...this is NOT my husband. We have three young boys..11/7/and 4 months..he got diagnosed last yr..is only 54 ...I'm crushed. No cuddling...no conversation...I've been like a dog begging for a sit down communication effort for months...no time of day seems to work. Won't use pill container...I feel the person whose hubby called the police on her..mine has a few times just BC I tried to talk to him in middle of note..we were up w baby..or kids went down...omg. He doesn't believe he has memory problems...won't exercise..in fact THINKS he does...rambling..venting...my first time..I'm 41 and he's even threatened to take my children FROM me.omg. what a strange and sad trick gods played on me and my life. My fabulous husband that used to have family dance parties w me n kids...and bounce and laugh on the trampoline..and cuddle w me...and joke ...and share magical love w our magical family...is gone...I want him back so...I also hear the ones whom fought hard...I go from hopeless to hopeful less and less...especially when I hear the things from his mouth...I'm so tired. I love the HIM inside of him....ty for sharing...

  • Dear Seeking Light, I know it's been 10 months, but felt compelled to reply. I'm so sorry you're going through such hardships with your husband. I've had similar incidents with my mother. (She's my parkie) She's in late stages, and unfortunately, in a nursing home, as she is just way too much for my husband and I to handle. But, the mood swings and paranoia are all too familiar. (She threatened us with calling the police many times for arbitrary or imaginary grievances) Her neuro swapped one of her meds, and so far, she's been much better. Less combative. Maybe have a doc check hubby's meds. It is a very cruel trick, indeed.  I wish the very best for you both.

  • Pardon me if it is duplicate response - I just scanned all other responses, but the term for your husband's behavior is 'pre-morbid personality' and here is an article describing it:  

    ncbi.nlm.nih.gov/pmc/articl...

    Some possible options:

    1) curcumin - 

    parkinsonsand5htp.blogspot....

    Note: curcumin is not well absorbed in the gut and MUST be taken with piperine.  Piperine is the alkaloid in black and long peppers and it makes curcumin more bio-available by 2,000%. Supplements with both curcumin and piperine are available.

    ncbi.nlm.nih.gov/pubmed/961...

    Piperine and depression: ncbi.nlm.nih.gov/pubmed/221...

    Question:  Are both curcumin and piperine both good for Parkinson's? Yes.

    Piperine: ncbi.nlm.nih.gov/pubmed/228...

    Curcumin:   ncbi.nlm.nih.gov/pubmed/222...

    A more conventional (but still not used much option) - bupropion/wellbutrin.

    Bupropion is the active ingredient of the antidepressant Wellbutrin and is also the name of the generic brand (hence it is cheaper).

    Bupropion, depression and Parkinson's disease:

    asm.confex.com/ipa/11congre...

    I hope this helps.

    Rich

  • Thank you for your reply. My husband's health, both physically and mentally,  has deteriorated drastically since my original post and he is now in a specialist Dementia Care Home where he is 20 years younger than the other residents and the least responsive. It is very sad, especially as we now have a gorgeous one year old grandson, who he doesn't respond to at all. 

    I am still climbing out of a deep depression, but have been able to return to work and enjoy being a grandmother. 

    I wouldn't wish Dementia on anyone! 

    Thank you again. 

  • Niacinamide for depression: livestrong.com/article/4952...

    Niacinamide for Parkinson's: 

    ncbi.nlm.nih.gov/pubmed/224...

  • So sorry to hear about your husband.  I know it may be too late but there is a specific type of magnesium that was developed with Alzheimer's patients in mind: magnesium L. threonate.  I take it and it is good for memory and recall.  It is currently acquiring patients for a clinical trial:

    clinicaltrials.gov/ct2/show...

    Within 2 days of taking it I found my memory improved greatly.  Not that I have dementia....just an aging memory and it works quite well.  Magnesium is good for depression too and if I were going to advise you to take 1 form of Mg for the brain, it is magnesium threonate. 

    Original MgTr study:

    ncbi.nlm.nih.gov/pubmed/240...

    Magnesium for treatment-resistant depression: a review and hypothesis.

    ncbi.nlm.nih.gov/pubmed/199...

    Rich

  • I really feel for you - I have often felt and wished for a magic wand, or, as I asked my GP the other day, if he had any husbands I could exchange mine for!

    I am the one with Parkinson's and he is, in theory, my carer but he is totally unable to accept this and fills his life with activities so that he doesn't have any time to be with me. He totally lacks the ability to empathise with my Parkinson's problems or at least show some interest or suggestions that might help. Having talked to various health professionals, I have come to the conclusion (along with others) that he is in the autistic spectrum. Whether is true or not (but it would make sense!), I have realised that I can't change him, that this is his way of coping and the only thing I could change in it all is myself and my dealing with the problem. So I have had CBT which i have found amazingly helpful. I had a couple of false starts with some trainees and had given up on it being any use but then a fully qualified therapist took me on and I am so grateful to him. I wonder if it would help YOU instead of thinking of it just for your husband to try?

    Just a thought, but with lots of love and sympathy for your situation!!

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