How Long Before Being Diagnosed Did You Know Something Was Wrong? | MyParkinsonsTeam

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How Long Before Being Diagnosed Did You Know Something Was Wrong?
A MyParkinsonsTeam Member asked a question 💭

My husband pushed and pushed me into marriage. I was happy with our relationship without a permanent commitment. So we marry 1 and half years after we met and 10 months later we married, he is diagnosed with PK. Looking back now that I know signs, I see them there at least a year before we got married. He drove a stand up fork lift that requires both hands to control independently of each other to control the machine. Guess my question is, since it was his body, shouldn’t he have known before we… read more

posted November 7, 2021
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A MyParkinsonsTeam Member

AnitaK
I guess I am slow because i do not totally get this. So he loved you and wanted to get married and you suspect he tricked you into marrying him?
Why? Did he know if he was not married you would leave him and if you were married you would have to stay and be his caretaker?? Then I saw you have been married for 8 years and you think he will lie about other things. You have been letting this eat at you for almost 8 years? I married my husband in 2016 we had both been married before and our spouses had died. In 2017 I was diagnosed with Parkinson’s. Did i lie to him so he would marry me and be burdened with caring for me ? Why would I do that? I had no idea I had Parkinson’s even tho I look back and see all the indications and symptoms now. I didn’t know it then. Even tho I had huge tremors at my wedding. I thought it was bad nervousness. I had never known anyone with PD ..,, no family history. I did not know anything about it and my world fell apart when I was diagnosed and started learning about it. My husband loves me very much and is extremely supportive. I think maybe if you read some of the posts Parkinson’s patients have written on this site you may feel a little softer towards him and realize that he needs your love and support now more than ever. I don’t want you to take offense by my answer to your question, it is just that I am looking at this from the warrior’s side of it. Yes , he is a warrior now fighting one of the worst illnesses there is. He knows in the end PD will win with his body but does he wonder if it will win when it comes to you? Does he know you have carried this for 8 years. You need to have this conversation with him if you haven’t already. You both deserve it. Good luck with your decisions and God bless you when you decide what you will do. HUGS.

posted November 13, 2021 (edited)
A MyParkinsonsTeam Member

AnitaK pd symptoms differ so much from person to person he might have had an idea something was wrong or he could have been like so many people ignore it and it might go away! I can feel the anger you feel cheated but if you love him be honest ask him but if you don't want to be with him pd or not I would not blame you in any way you're entitled to be upset

posted November 7, 2021
A MyParkinsonsTeam Member

Thanks Erinanne, I am truly tormented and struggling. I feel he will not tell me the truth if he knew or not. I just feel jaded. Been married 8 years now and this nagging feeling will not go away!! I am on antidepressants now for over a year and those ok’d feelings keep haunting me. I appreciate your input.

posted November 7, 2021
A MyParkinsonsTeam Member

He might not have paid attention to any symptoms he had or he may have noticed but didn't want to think about it so he denied to himself that anything was wrong.

I suggested to my husband about 3 years ago that I thought he had Parkinson's. He had a tremor and was slowing down. He no longer wanted to go on long walks and our hikes were always cut short. He said no, there was nothing wrong. Several months later, I asked his doctor if he thought Jim had Parkinson's. The doctor said, he didn't think so. A year later, I asked again and he watched Jim walk and tested his strength and reflexes and recommended he see a neurologist. Jim waited several months before calling to make an appointment with the neurologist. He just didn't want to know. Thanks to Covid, our first appointment was virtual. The doctor agreed with my assessment, after we discussed his symptoms, and put him on medication. The medication helped almost immediately. Still, Jim denied that he was sick. Two years later, despite the fact that his Parkinson's is pretty obvious in the way he walks and shakes, he still doesn't want to believe he has it. He has done no research, though he listens when I share what I have learned. He has no interest in joining a support group or doing exercise with other Parkies. He doesn't want to know what lies ahead. Denial is pretty common.

posted November 7, 2021
A MyParkinsonsTeam Member

Not necessarily. Even the doctors don’t always know for some time. Parkinson’s is not an easily diagnosed disease. Tremors are a common symptom, for example, but you can have a tremor without it being PD. In fact, I have what’s called benign essential tremor, which means it’s nothing but tremor, won’t develop into anything but the tremor, and it’s definitely not PD, just a dadgum, irritating tremor. Another common symptom is having trouble with your balance, but again, that can be caused by a lot of things besides PD. So many times people go to the doctor for some particular irritating symptom, the doctor tries the more common treatments for that symptom, but the treatments don’t work. Only then does the doctor suggest you go to a neurologist and THEN you find out it’s PD. Then it comes as quite a shock because you thought it was just a shaky hand or just a bit of trouble being off balance, or whatever.

I can understand you feeling you got kind of swept up into something you weren’t ready for, that you really didn’t mean to sign up for something this serious. But sweetie, we ALL feel that way, those of us with PD and those of us caring for someone with PD. It’s a terrible shock to hear the diagnosis and it takes your breath away. But there’s no quick exit out of the diagnosis, no evil villain to blame for the diagnosis, and no easy answers for how to chart your path forward. Even so, it IS possible to continue to live a good life. Work with your doctors, do your part, and have faith. Bless you 💜

posted November 7, 2021

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