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.

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cmdw2600 | @cmdw2600 | Apr 11, 2023

I feel for you in that you are not being given then opportunity to be helpful. It does sound like your husband probably has PD. Is he able to smell? My husband’s neurologist put a vial of ammonia under his nose and he couldn’t smell it. This was a clue along with his gait.

Parkinson’s is a frightening diagnosis for him (and for you) as there is no cure, but your husband needs to understand that medication with most likely help with his symptoms. My husband’s gait was much improved and his hand tremor is occasional.

My husband was hospitalized a year ago due to extreme dizziness and a minor fall, and guess what, he was simply dehydrated. Keeping up with water consumption is very important. I know you know this.

Best wishes to you and your husband, Cindy

Joanne Eckert | @joanneeckert | Apr 11, 2023

I’m so sorry to hear about your husband. You sound like a wonderful wife. In answer to your question about talking to a doctor about your husband behind his back, my opinion is “Yes.” My son was diagnosed 6 years ago with PD. He is now 48. I was with him, my husband and my son’s soon-to-be ex-wife at the neurologist office a few months ago. I lagged behind and spoke to the PA by myself about my son’s personal life because I didn’t know if he knew what was going on. I’m so glad I did. The doctors had no idea that my son’s wife is divorcing him, that they have 5 young children, that his wife has been dating for almost 2 years and that we had to take most of our savings and purchase a house for him so he could be close to his kids. It means a lot for doctors to know a patient’s personal history since it effects their mental & emotional state. I also requested that my son see the neurologist whenever he has an appointment. They agreed to it. You just have to ask, insist if you have to. Is there a chance your husband would consent to a trip to the Mayo Clinic for an evaluation? I think that would be the BEST thing for him. That’s what I’m trying to get my son to do now because I think he’s on too much medication. I also found a much better neurologist for him but he hasn’t consented to go yet. I don’t like the fact that you had to wait 5 months for an appointment. Isn’t that outrageous! Whatever you can get your husband to consent to, you probably won’t have the opportunity like I had to lag behind & talk. But there is another way…write EVERYTHING down, even dates if you can. Keep it hidden from your husband and a week before his appointment, mail it to the doctor, marked “personal.” After all, you’re simply trying to do your best to help the love of your life. I wrote a letter in the very beginning because my son needed a second opinion and this top neurologist at Columbia Presbyterian in NYC couldn’t see him for months. I called his office behind my son’s back. The secretary couldn’t help me. I asked her if I could write a letter and she said it couldn’t hurt. I wrote a very heartfelt letter and mailed it, asking the neurologist not to tell my son and he didn’t. Within about one week, my son called to tell me the doctor pushed his appointment up by 3 months. I was so happy. I believe if we approach doctors like we would a friend, they will respond. After all, God has created all of us equal, even if we don’t have any degrees. 🥰. Lastly, our biggest weapon against these awful diseases is prayer. 🙏🏼. Talk to God. He hears ALL of our prayers and He loves you & your husband very much. If you send me your husband’s first name only, I will put him on my Parkinson’s prayer list. I forgot to say that my
oldest son has finally stepped in to help, thank God. The problem is that we all live 3 hours apart from one another. We truly need a miracle! And I expect one! God bless you & your husband. 🌺🙏🏼🌺

jrwilli1 | @jrwilli1 | Apr 12, 2023

I have called the office to heads them up on issues I want them to address and they don’t let in that it came from me. And I’m going to do it again with his next visit at the end of the month since he gags and chokes on a lot of his pills. But to add to his Parkinson’s which he has had for 7 years with all the exercise he did and taking his meds the only things I see worse is his gait and swallowing . Another but he also was diagnosed with a bone marrow cancer last September and not doing as much exercise has hurt some of those symptoms. And now he takes a boat load of other pills. So you have to speak up for them. Yes mine still thinks when some of the cancer things are settled he will be able to drive. I’m not so sure about that besides he wasn’t a good driver before all this. One day at a time is all I can do. Speak up

Teresa, Volunteer Mentor | @hopeful33250 | Apr 12, 2023

Hello @grandmaraines,

You do have a difficult situation. As others have suggested, it would probably be helpful to contact the doctor's office prior to his appointment, to let them know about the symptoms that you observe on a daily basis. This will help the medical staff help your husband.

You can do this by phone or by using the patient portal. Communication on his behalf is probably the best thing you can do right now.

Idied2x | @1died2x | Apr 18, 2023

WOW - I can't help you BUT to your question about "is there a rule" against talking to a Doc behing his back. There are no rules. He needs help and is in denial. You will go nuts. Find someone to talk to - if one says no, move on. If nothing else you need support to help you put up with this. I kow what I would do if my wife was like this but my wife is not your husband. First get support for yourself then keep looking for the right person. If the standard docs won't help talk to some alternative help people. AND don't just spend money on people that won't help. Look outside the box.

TSB | @terrirussell | Apr 20, 2023

Hi……yes yes yes……just like all these other people have said…..yes to communication to the doctors! We are in a new world in health and you must be an advocate for your loved ones. My mother had it and honestly made the last few years of my dad’s life VERY difficult. The PD makes them very rigid in mind as well as body. My sister and I took over when my father died and we took no prisoners with her! We put her in a nursing home, got her on all the meds but I insisted they put her on Effexor as GAD runs in the family and is thought to be a precursor to PD, thanks to the research from Robin Willians!..I have GAD as did my mom, and her siblings and now my grown children!……all on Effexor xr. In any case, that was a huge game changer for handling her, and actually enjoying her and her enjoying life until she was 94!…..She didn’t want to deal with it when my dad was alive and her world became smaller and smaller and she became more intense. She never could help it but my dad begged for Effexor from the doctor and he was old school and uninformed. So I just wanted to share that in case it helps you, and since you have 5 grandchildren at least, that they know about the Anxiety Disorder actually coming first. I am 72 now and still have no signs of PD but I am the only one of my cousins who can say that and one just died of it!. Four of the grands have been diagnosed w GAD in different states and countries!….And if you ever see someone “pilling” w their fingers…..get them to a doctor!!

Joanne Eckert | @joanneeckert | Apr 21, 2023

Check out Joseph Christiano, ND. Watch some of his videos. I’m going to purchase the product for “Brain & Eye” health for my son who has Parkinson’s. It’s definitely worth a try since his products (drops) do not interfere with any medications whatsoever. They are “stem cell activators” which help your own stem cells to work as they should. God bless!

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Joanne Eckert | @joanneeckert | Apr 21, 2023

In reply to @terrirussell "Hi……yes yes yes……just like all these other people have said…..yes to communication to the doctors! We..." + (show)

What is “pilling” with the fingers? Also, does GAD mean “generational anxiety disorder?” Thanks so much. 🙏🏼

TSB | @terrirussell | Apr 21, 2023

Yes to GAD. And Pilling is the thumb and index or middle finger, rubbing back and forth w the thumb rubbing on the first joint of either of those fingers. Mindlessly……looks like you have a thread you are rolling in between….hence Pilling…..an old word but still used to reference this.