My husband is in denial

Posted by grandmaraines @grandmaraines, Apr 11, 2023

My husband has had depression and anxiety for years. He was referred to a neurological psychologist for testing. He agreed with my feeling he was in the beginnings of Parkinson's. Referred to a neurologist for further diagnosis. Had to wait 5 months to get an appointment. Things worsened in that time, but he did not see it. His gait was shortening, sometimes shuffled, unable to walk far, like 10 ft, without being unsteady, falling 3x, he was dizzy on standing, his arms rarely swing, handwriting getting cramped, hands shaking when carrying a dish of food,legs shaking constantly when sitting if not flat on the ground (I have a question on why he shakes feet/legs whole time but it stops when he sleeps- is that common?- is that common?). He has a mask look, has memory issues., complex tasks are difficult.
When he went to the neurologist he had to meet a "gate keeper" doc 1st who decided if he needed to see the main doc. My husband did not let me to go in with him, I believe knowing I would share all this. He was asked questions (he lied, claiming no issues with shaking and denied any family history- his mother died from it). I read the report and there was so much not true, but I had no permission to talk to doc about it. He said he saw no evidence of any need to see the neurologist, which validated my husband's denial.
So here we are, a year later and the shaking is worse, other signs worse and he talks about being anxious and feeling "lost", he sleeps almost all day, moves very little , afraid of unsteadiness, blaming his knee that he had surgery on. His gait is worse but cause afraid of falling. I truly feel he has Parkinsons or a similar tremor type condition.I know if I suggest we try to go back cause doc said return if symptoms worsen that he will get mad and deny he needs to. I am at a loss of what to do. He barely gets off the couch, resists any exercise, won't drink much water, skips meals as appetite is low, pretty sure i will need to intervene with him driving as his reactions are not great.
The longer he goes without some med and PT help the chance of slowing things down is becoming remote. How do I approach him ? He has a wellness visit coming up with regular doc (who is only a PA and I am not impressed by him) has anyone ever tried contacting a doc on their family member's behalf without their knowledge? Is there some rule against that? Cause I know he will deny anything is wrong, he barely talks to doc, and he won't let me go in with him. I am in despair as to how to help him.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

@katrii

I will definitely go to the recommended website. Thankyou!
He’s been having difficulty turning over in bed for a year or more…we bought a railing, which helps. His walking (especially backwards or turning around) is like a wind-up toy—little steps, unsteady. He’s just started closing his eyes often. He’s tried the standard medicine for PD, but it made his toes curl terribly, with pain. Brain MRI showed nothing. Also, he has bladder issues—every time he stands up he has to go, quickly. We’re seeing a new neurologist in February. I can’t wait! I feel I’m slowly watching him change/I know it’ s not about me, but it’s hard.

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I’m so sorry that you’re both going through all this. My husband has been taking Carbidopa Levodopa since he was diagnosed several years ago and his toes started curling in the last year. He recently had Botox injections, one in the foot and one in the calf, and it made a huge difference. These need to be repeated every 3 months. I hope your new neurologist is very helpful for both of you.

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@katrii

I will definitely go to the recommended website. Thankyou!
He’s been having difficulty turning over in bed for a year or more…we bought a railing, which helps. His walking (especially backwards or turning around) is like a wind-up toy—little steps, unsteady. He’s just started closing his eyes often. He’s tried the standard medicine for PD, but it made his toes curl terribly, with pain. Brain MRI showed nothing. Also, he has bladder issues—every time he stands up he has to go, quickly. We’re seeing a new neurologist in February. I can’t wait! I feel I’m slowly watching him change/I know it’ s not about me, but it’s hard.

Jump to this post

@katrii
Of course, it is hard for you. Seeing a loved one having such a difficult time and not being able to find the right kind of treatment is very frustrating. I'm glad that you will be seeing a new neurologist. I hope the new neurologist can come up with a new treatment plan.

You said that the standard medicine was causing side effects. Has his doctor suggested a new medication? Here is a link to the Cleveland Clinic website which lists a variety of medications that can be used for PD, https://my.clevelandclinic.org/health/treatments/parkinsons-disease-medications

Has your husband been offered physical therapy? Some physical therapists have special training to help PD patients. If you would like more information take a look at the link from the Davis Phinney website, https://davisphinneyfoundation.org/lsvt-big-loud

Perhaps, in a previous post, you mentioned your husband's age and physical condition prior to these symptoms. If not, please share as you are comfortable doing so.

Will you post again with your questions and concerns?

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