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Husband seems to have PD/tremors but is in denial. How to help?
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.
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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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3 Reactions@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?
My husband died with Parkinson's. It is very hard to find a good neurologist, One of the nurses at his GP's office said, "Neurologists are a funny bunch." The worst one made me cry telling me that he didn't want to treat my husband and no one else would want to either. Another left town suddenly taking all of my husbands records with him. Another refused to treat him at all and wouldn't answer my calls. My husband was not a difficult patient. I finally asked his insurance company to find a motion specialist for him and they did. He got excellent care from then on.
If you have health insurance ask a patient advocate to help you. I live in a small town ,maybe it is easier to get a neurologist here.
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4 ReactionsThank you for your response. We all have tough things to face and need much prayer. My husband's name is Tom. An update- his tremor got so bad he finally said he needed help, not knowing his PCP had already referred him.. he agreed to go and although Dr did not call it PD, he did say for now he is calling it a Parkinsonium type and started him on CarbidopaLevadopa. Tom hasn't actually embraced what he has. His only goal was to stop tremors and walk better. So at least he is starting.
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2 ReactionsSo sorry to hear that. My husband finally went to a neurologist for help for tremor and just got on med and is starting an intense PT program for mobility at the end of Feb. He is not calling it PD but getting the help was my goal.
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1 ReactionThat's great that he is getting help. The Parkinson's patients in our support group found that Rock Steady Boxing helped them.
My husband had "off" periods when his CL drugs wore off and he was switched to Rytary which helped a lot.
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2 ReactionsBack when I was healthy and a care-giver, I ingtervened BIG TIME.....let the lady have her say that she was fine and didn't need to see a specialist, blah, blah (I was in the room with her, actin g as her 'memory person'), and we walked out of the doc's office together, then I just left her hanging, by turning around and going back into the doc's office and said "you need to hear more".... told him plenty of omissions, and then said "She shouldn't be living alone. I think you need to call her daughter". Ballsy? Well I suppose, but the doctor wasn't going to get the truth any other way, so I just butted kin.
You need to go for it! Talk to the doctor. Even if you have to call and make an appointment for yourself to get the chance. Caregivers can only go crazy if they don't take the initiative !
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1 ReactionI am my spouses person. In other words I'm legally and able by him acknowledging as his wife and can receive information. I am not positive but , I don't think you can intervene with a DPOA when they are not of sound mind. Check what you can do in your state. So sorry you are going through this. 🫂