Dear friends, I have been grappling with PD now for over ten years and it is getting harder and harder to go on and I have been contemplating MAID program for a while now, but my wife, who is my only support is not letting me go through with it. She loves me dearly. Moreover, she has no one except me in this world and for fear of being alone, and she is hurting herself trying to take care of me. She is not accepting that fact and it kills me to see her life that. We have no life. We stay inside all the time. She stays with me 24/7 and has no time for herself. She cannot leave me for a minute due to the progression of my disease. I am constantly in fear of suffering I will have to endure if something happens to her. I feel guilty all the time. To give some idea of her burden, she cannot go to bathroom without taking me with her. She has no time for her to shower, eat, or do anything. She is very smart, intelligent, and hard working and wants to prosper in life and work, but my PD is hindering her dreams. She has no time to dress, go out, take a phone call, or answer the door. It is frustrating for anyone and she sometimes bursts out. When I talk about MAID, she blames me emotionally blackmail and threats. Also, I should mention she is also against my taking any medication except 3 levo/carb a day and some mucuna. She does not want DBS. There is so much to say but I do not have ability or strength to go on right now maybe I will update later. I have no one to ask to make her understand and think rationally. Whoever I have talked to just say it is her wish let her take care of you as long as she can but I am constantly in fear of suffering and torture I will have to endure and so I want to end it peacefully. I would do anything for her, but with this PD I am helpless. I tried everything I could. I would like your views and input and maybe someone can persuade her mind. Anyone interested can call us too.
Thanks
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gurdeep11
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I know there is no easy answer. If there is a close relative you and your wife can talk to this about together maybe they can help you both navigate this path. I am thinking the path to DBS if it could help.
Your wife gives me major Kathy Bates in the Misery movie vibes. There's something really off in this dynamic you describe, it almost seems that she takes pleasure in your suffering and your dependence on her, and at the end of the day she's the victim when you are the one suffering with the disease. She evidently doesn't want you to get better. Please don't give her power over you, you are an adult and very capable of making your own decisions, there's many things you could try to better manage your symptoms. Please beware of your "loving wife", she seems psycopathic, put yourself and your wellbeing first, reach out to an advocacy group, take back control of your life. I wish you well, be strong.
You describe her as ‘smart and intelligent’, but she won’t support you taking adequate medication nor will she ‘allow’ DBS. I think we call such a contradiction an ‘oxymoron’.
My thoughts as well, it sounds almost psycopathic. I feel sorry for the OP, there's many things he could try to better manage his symptoms, yet the "loving wife" stops him from doing it; something seems really wrong and off with this dynamic. My husband is YOPD for 2 years and has been managing his motor and non motor symptoms with HDT therapy and PD Care and PD Neuro helmet from Symbyx. We had a small setback when he caught Covid but he's overcoming it and it gives us hope that these therapies, though not a cure, help PD patients have quality of life. A loving wife cares about the wellbeing of her partner and supports him on his journey. This lady gives me Kathy Bates in "Misery" movie vibes.
there is so much more you can do to help your PD symptoms the b1 therapy has changed my life for the better. It’s never too late to try. Facebook group Parkinson’s b1 therapy
join the fb group and read Daphne Bryan’s book as mentioned in all these posts below. I started the protocol nearl two years ago and balance improved. Stopped dragging right foot arm swing came back. Easy to turn in bed. More energy. Less anxiety. Smile back, and much more. Getting the right dose is not easy. You need patience and follow the protocol exactly and amazing results follow. My success story is on utube.
In my opinion you are not on anywhere. Near.empugh meds far to low dose no wonder.your struggling it.must be causing you stress and anxieties I hate to be so.blunt but maybe you should.make your own and maybe look at DBs it's definitely an option I don't know what maid isand don't know what maid is and don't want to know but.i do know life is precious in any form have you talked to.your.neurolagist maybe he can help all the best and stay.ztrong
As Windermere1 says. Please try High Dose B1 Therapy. There is a Facebook page and a book, available from Amazon written by Daphne Bryan that details the B1 protocol, it is certainly very trial and error but when you do reach the right dose for you, you'll be ecstatic with the results. There's also a website, but definately go to the FB page there's tons to read and any people reporting great success with it
You need to find, and both go to visit, a good counsellor. Talk things through with someone trained to facilitate that (not a friend or relative). Best of luck
hello - I am also a wife & caretaker of my HwP. I would call family for help. I would also take these other peoples advice and seek info on B1.
Daphney Bryant wrote the book: “Parkinson’s and the B1 Therapy.” Please order and read 1st. She said Dr Constantini recommends taking a B Complex, with the B6 in a low dose (we take 1B daily with just 12 mg if the 6) along with Life Extention’s NeuroMag (1in the am with the B + 1@ dinner). Her Facebook page is a huge resource
You have my full support brother. There are so many resources here. What has helped me is fasting, red light therapy/laser/near infrared. Methylene blue! 9-me-bc. Nutrition changes.
Exercise. Heavy metal detox. Realising I am not to blame for the circumstances of life in which I find myself, or for the emotions of others. I appreciate that everyone will have unique circumstances. Wishing you the best!!
In many ways we’re in the same boat…I’m the wife and I fear losing him….but I have to take him everywhere with me and don’t have much of a life. Thankfully I can work from home. He is not cognitively aware enough to be sympathetic the way you are, so in my opinion it is not the end for you and much more can be done. (He’s had it for 17 years now)
As others have mentioned, she needs to let you experiment with more treatments so you can both enjoy the years you have left. Maybe you even need a new Movement Disorder Specialist.
Also, since this year after much diet and therapy work, we got to a place of being physically healthy, so we went on vacation together to Europe. It was extremely difficult to plan with the wheelchair and his tendency to hallucinate, but we had a blast! It helped to reset all of the depression from the disease.
Some thoughts to help you both through it. I’d hate to see you give up too soon…there may be real treatments available in a few years.
Hi! Sounds like you need to speak to a neurologist or family doctor to adjust your medication to a higher dose, or at least get some input other than your spouse. You have a right as the one with the Parkinson’s to decide your own quality of life and it sounds like you are not being given that based on your wife’s own opinion about your medication or alternative choices. It’s difficult enough having Parkinson’s and trying to deal with fears, progression, and psychological trauma of changing reality that involves all your hopes and aspirations. You need support! Both emotionally and physically to bring your life back into a manageable physical state and psychological equilibrium. Please consider taking this into your own hands by increasing your dosage under the guidance of a physician or by seeking qualified professional assistance elsewhere. Spouses and/or family can sometimes have their own agendas and may mean well but are actually interfering in the process of your journey, particularly when it pertains to your health and psychological well-being.
Please let your wife know your own pain and suffering because of not feeling like you are being heard. If she is unable to let go of her own ideas, one of your best options is seeking psychological or spiritual help outside of your more closed world through supportive friends, family or therapists. Your family doctor will be able to point you in that direction.
When someone is sick it's natural to ask why me. Not easy to answer but I often told my wife (75 and PWP for 20 years) that our mission was to show the world what was possible with love.
Read on, this is our story.
The man loved his wife more than anything in the world. She was in a wheelchair and could not move without his help, but he did not care. He took care of her every need, every day, with a quiet determination that inspired those around him. For him, there was no other option. He loved her deeply, and he would do anything to keep her close. The world saw this, and it was changed forever. They saw what true love could be, and they were humbled by it.
The man and his wife were a team, a unit that was bound together by something more than just love. They were bound together by a shared experience, a journey that had taken them to the very edge of what it means to be human. It was a journey of pain and sacrifice, of joy and laughter, of tears and triumphs. And through it all, they held on to each other, never letting go. The world saw this, and it was changed forever. They saw what true love could be, and they were in awe of it.
As they sat together, holding hands, the man looked at his wife and smiled. "We showed the world how to love," he said. And it was true. Their love had changed the world, had inspired others to take a chance on love, to take a chance on something that was greater than themselves. They had shown the world that true love is not about what we can get, but about what we can give. It is about sacrifice and selflessness, about giving of ourselves to another person without expecting anything in return. They had shown the world how to love, and the world was a better place because of it.
Dear friends thanks for your reply: Yes, i have tried everything, i plead to whomsoever I can to make her understand. Been to church too and you know they do not support MAID, so yeah. We do not see the doctors because they have recommended 2 pills every 3 hours plus other meds but she will not allow me fearing the bad side effects. So, what I am doing is trying to set her up for life after me. Our families have deserted us, because she married me in this condition and they cut their ties with her and I do not have much of a family. This stress was killing me and i had no outlet. So, as a last resort, I posted here. She only believes in alternative therapies anything but no PD meds. My anxiety is so bad but she wont allow Ativan or clonazepam for fear of addiction. I love her a lot and she does more so but she is not able to see the real picture. Your comments
She is making your Suffering far worse than it has to be. Please seek psychiatric help for both of you. If she won’t allow it you need to call social services and have them make a wellness check.
I am really sorry you are suffering so much but it is ridiculous to fear side effects when you are literally considering maid. I mean what side effects could possibly be worse than this state? Also you saying she won’t “allow” you to take medication is ringing all kind of alarm bells. Please please do seek counselling and advocate for yourself. You are already suffering because of this disease at such a young age. You don’t need to put yourself through additional suffering by denying medication that might potentially help.
My wife has had PD for 14 years and is doing reasonably well given several different meds, DBS and daily exercise. I was diagnosed a year ago and am just preparing to start meds. It appears to me you may benefit from additional meds and should consider DBS. You have nothing to lose. Don't give up, push to achieve the most you can! Best wishes, Joe
Thanks PDpatient for your concern and care. I am just hanging in somehow.. you are right the stress of caring is taking its toll on her but she does not accept it. but I guess since we love each other, i will have to endure this horrible pain and symptoms till God take me away, at the least, peacefully soon..
Thanks for the response, Gurdeep. I am glad that you are still able to communicate with the outside world.
I feel bad for you and I empathize and sympathize with you and your wife. I can see that there has been a number of comments in response to your post. It pains me greatly that this cruel condition is not properly understood by many if not most of the population. It still carries a stigma and the perception that a diagnosis of Parkinsons is a sentence of death. Nothing could be further from the truth. I can understand your frustration. Sometimes I feel the same way. But, when the medication works, I have to admit, it feels like I have might have been misdiagnosed🤔😒.
My perspective is that at some point in your Parkinsonian journey, you have to admit that for whatever reason, you were chosen for the disease at your young age and under your particular circumstances. You don't know why or how to make some sense of it. But, it starts to make sense eventually. Life has a way of finding a better way to get to where it wants to go.
Of course, we all wish that we didn't get it. But once you have been properly diagnosed, what else can you do other than plough forward. Death is not the default option that it appears to be. I urge you to be open to other ways to make your wife understand that life can be lived somewhat satisfactorily with a number of options including DBS or a combination of medications.
Life is not easy and it is incredibly tough for the young diagnosed and it is inadequately understood. I was diagnosed at 48 and that felt young, which it is by definition. I had to struggle to get back on track after a period of denial, worry, anger, frustration, angst and acceptance. I can only imagine how you must feel.
I only want to ask - can you reach out to your parents help with this situation?
I will continue to pray for you and your family and wish you the best.
thanks for your such a long reply and taking time out for a stranger. It means a lot. Trust me, I could relate to each and every word.. My wife is totally against DBS and meds, but if the other option is suicide, I would try everything to live even for a second more. I am not bad mouthing her, the thing is she is really killing her day by day by keeping me alive. I just cannot get through to her.. Oh well.. Thanks for your prayers we all need them and i do pray for everyone.. maybe something good i might have done..No dad and mom has left us on our own, since she cannot care for me she feels she cant interfere with my wife..
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