I found this group a few weeks ago, I’ve been reading posts and already am getting answers to my many questions. My husband was dx ~2013, is there a caregiver group for PD? We have been married for over 40 years and find myself wanting a separation. I know my vows and take them seriously but his behavior is bad and getting worse, he’s very angry and has zero motivation to do anything unless I accompany him. I’m still working and plan to until 65. He is on so many meds for PD, type 2 diabetes, had double bypass/valve replaced early 2022. The heart dx came after drs finding heart issues after his constant shoulder pain complaints. I’m reading shoulder pain is/can be PD. Doe that pain subside? What do you do for shoulder pain? He takes two hot showers a night for pain, I’m about to move to another bedroom he is keeping me awake. I know I am asking a lot help me find a starting place to better understand this condition. TY
Spouse to PD : I found this group a few... - Cure Parkinson's
Spouse to PD
Dopamine agonists have been known to cause adverse personalty changes. Which PD meds is he taking?
Rytary and drugs for stress and pain: gabapentin, Wellbutrin, sertaline, lorazepam, trazadone, sorry for misspelling
Rytary not a dopamine agonist.
There is no excuse for abuse. His illnesses are not a license to engage in bad behavior. Marital counseling is one option if he is willing.
Parkinson's can cause dystonia ( muscle tightness) which can result in pain. Adjusting his Rytary dosage is one possibility.
thank u for feedback, I agree no excuse for anger his meds and his compliance to them is another issue 12 rytary 4 pills 3x a day 33 pills in total plus insulin he never gets them all in.
It seems that he is taking an awful lot of different psych meds to manage personality problems and that they're not working very well. Chronic anger is corrosive to health - both his and yours. I take it he is resistant to self-improvement endeavors. It crosses my mind that laying down the law might be appropriate - insist he enroll in an anger management program if he wants your continued love and care. There's plenty available on Zoom these days if he's not able to travel.
That is the wrong comment; about abuse.
Clearly you do not FULLY understand how the neurological breakdown of logic and judgement is non-existent in patients with Parkinson's disease and other neurological disorders.
They do not do it willingly, it is distressful and sad, but is part of the symptoms. As a care giver I fully understand and never take it personally. It is not the person but the disease. I have a choice, and I choose to support my parent with the neurological disorder.
How sad people have no empathy for patients who suffer mentally and can not control their emotional outbreaks. How different it is when I hear that people with tourette syndrome are more aggressive and abusive but their family members accept the situation and try to support them.
Have you forgotten that you are free to think and move on your own accord without any neurological disorder? They (Parkinson's Patients) can not.
Have you forgotten that you can do what you want because you are capable of controlling your thoughts as a healthy person?
Put yourself in the patients position, they do not mean what they do.
If you love your family member then you will accept that they are not functionally normal and they can not change their thoughts, but you can change your emotions and be supportive; unless you don't really love your family member with the disease.
Clearly you have not studied the subject matter of neurological disorders and where they originate, how the synapses works, how the aggregate of proteins in the brain feed the brains energy supply, how neurotransmitters are effected, how the mitochondria is effected, how the visual cortex functions, etc, etc, etc. In a nut shell have you taking into account the signalling cascade downfall is affected by the regulations of the key pathways to a health brain function?
Its sad that you put abuse in the same context of people who commit physical abuse knowing what they are doing.
Interesting that you sit in judgment of someone who not only has Parkinson’s, but someone who is very active on this forum and empathetic and helpful to many here. Your statement “Clearly you do not FULLY understand how the neurological breakdown of logic and judgement is non-existent in patients with Parkinson's disease and other neurological disorders” is a sweeping generalization that may apply to some PWP, especially those with dementia, but it certainly does not apply to all or even the majority of us. Clearly, you are caught up in your own situation and have read enough to consider yourself an expert.
Expert are your words. It is my Opinion, based on observation, readings and belief.
Remember opinions are neither right or wrong but ones own interpretation of set of events that best describes the situation.
You clearly have rose colour glasses on. I have given up my own career / life / friends, etc, etc. I am dedicated in carering for my mother 24 hours a day seven days a week, no rest, just a love for my mother. I accept all her bad days because I care. Clearly you don't have a clue about neurological disorders. I do not care what a person with the diagnosis does to their loved one, or partner. It is not their fault.
Clearly when someone makes a marriage commitment they do not understand the Kings English when they repeat "In sickness and in Health". So clearly you have selective reading syndrome, did you not read the part of "her husband".
You can not pick and choose what part of the marriage commitment you want to agree to. She maybe suffering and distressed, but so are so many people who continue to support their loved ones.
I wish her all the best and for her to have a positive attitude.
You are entitled to your opinion, but I am constantly researching several hours a day about the human body and the biology and chemistry that allows it to function correctly. Clinical studies, peer reviewed articles, repurposed drugs, etc, etc, etc.
I have not got time (like some here on the forum) to complain about their family member. Read, read, and read and educate yourself about what they are going through, not complain. Love and support is what is needed.
Remember people with "Tourette's Syndrome" are fare more aggressive, but family members understand. Have compassion and not look for ways out of a commitment.
Best wishes to you.
Personality changes brought on by neruobiological damage caused by PD are incredibly well documented and are not only just as much a genuine symptom as anything motor, are actually far harder to treat effectively. Would you tell a PWP that accidentally knocked a glass off a table that their illness wasn't a license for bad behaviour? I doubt it. Some of the sweetest people around have turned into absolute assholes as a consequence of this condition but it seems rough to sugest it is entirely their fault.
You are welcome here, but if you need more, this FB group may be what you are looking for: Caregivers' of Parkinson's Disease Support Group facebook.com/groups/pdcare
It's a difficult situation and you need your sleep.
I think it makes sense to sleep in another bedroom since you have that available. You might both get more sleep that way. You could try it temporarily.
You might tell him that you both need more sleep and should try this for a while. Has he tried cold packs for his shoulder? Sometimes heat helps temporarily but if he uses cold next that should help. 5 or 10 minutes of cold.
Thank you for your post! We have similar demographics – we have been married for 44 years and are in our early 60s. I am reading this in the middle of the night with a cold pack on my shoulder. I can’t sleep due to pain. My husband and I both work, but I sleep better on our theater seating/sofa than I do flat in bed. We miss not sleeping together, but it makes for better days and fewer symptoms if we both get our sleep. When he is tired and grumpy it makes me stress and then my symptoms increase. It’s definitely harder to have a good attitude when you are in pain and/or tired. I know how much I appreciate everything my husband does for me. I would be lost and so very sad without him. Has your husband always been grumpy or is this a new thing? Possibly, a heart to heart talk about how his attitude makes you feel would help if he’s still functional psychologically? Good for you for hanging with it. It’s not easy and I know that many spouses give up because it’s so hard… just when they are needed the very most,. I actually offered to divorce my husband when I was diagnosed because I didn’t want him to have to go through this with me. He declined, All the very best to you and your husband!
Hi NanaCC - there is a wealth of information on HU.
Has your husband's primary care physician or his neurologist looked over all the meds he is taking? Sometimes one medicine doesn't work well with another medicine and can cause other medical conditions. From my previous job - folks with Alzheimer's who develop anger issues, the meds needed to be tweaked and sometimes took awhile for get to the right dosage. These folks weren't angry before they developed Alz. Hard for all.
If the meds seem OK by the doctors then his anger could be he's frustrated and saddened by his current medical situation. Hard to accept the unacceptable. Have a heart-to-heart talk and ask him what you can do to help make things easier, is he afraid of the future, is he in a lot of pain and where, does he think his meds are helping, then come up with solutions together such as speaking with his primary care and his neurologist and learn how to resolve some of his medical and other issues. Would a heating pad work better than taking 2 showers? Tell him you need some solid sleep and will sleep in another room a few days a week until you figure everything out.
Hubby's lack of motivation could be apathy. Read up on Mannitol Balance. Could help. Has he tried the HB1 therapy? Could help with pain and stiffness. Search the HU sight - tons of info on HB1 which has helped many PWP (people with Parkinson's).
Break down the issue into small segments and review each one - find solutions for both you and your husband. Work together. Work with the medical professionals. You both are under a lot of stress. Don't separate because of the stress. Find ways to resolve the issues together. Talk it over. Take measures. Find solutions.
Go for a car ride, find a new restaurant and have a relaxing lunch, or sit by a lake together and just relax.
What is HB1 therapy? I cant guess what the letters stand for.
She is referring to High B1, more commonly called High Dose Thiamine or HDT. (Thiamine = vitamin B1)
A frequent contributor to Health Unlocked is Daphne Bryan who wrote a book on HB1 therapy (HDT, High Dose Thiamin, HB1).
Here's some info: youtube.com/watch?v=iu1vJ8e...
Thanks!
it is hard and meds change the behavior and personality, but remember you are the only hope he has....
understand completely. M y husband was diagnosed in 2014 we been married 43 years and now I really understand the vows in sickness and in health!!! But your husband is on a lot of medications. These could be the issue especially the psych meds. My husband is not and he is not nasty or mean. He takes a lot of vitamins along with his C/L, a blood pressure medication. His vitamins are B1, B12, probiotic, D3 Vitamin C and I make him smoothies with lots of great stuff in them!!
per parkbear i would look at rytary and then at the psych meds..apathy is unfortunately part in parcel.; i watched my grandfather go through this ..seperate bedrooms is a good start you need some relief. hang tough
welcome friend…
First, get yourself into the other bedroom, and get some sleep. You have some difficult decisions to make, not a good idea when you’re sleep deprived.
Is the anger new since his diagnosis, or has he always had that problem to some degree?
Depending on where he gets his PD care, you may be able to get help from a social worker to look for solutions. If you haven’t talked with his neurologist and other prescribers about the personality issues, you probably should.
It may be PD, maybe not.
The lack of motivation is a frequent PD symptom, there’s quite a lot on the internet about this. Also cognitive decline/dementia, which could be related to the anger.
Yoy’re both in a tough situation. You probably need to understand his situation better, to then decide if you’re ABLE to give him adequate care.
My dad had PD (as do I), and although he was never abusive, it was eventually too much for my mother to handle so she found a nursing home for him.
If he is not, he should absolutely be seeing a psychiatrist to evaluate those psych meds! They are the experts and a neuro or PCP is not.
And for those of you trying to shame this poor woman, how dare you. You do not know her personal circumstances and should not be judging her. Educating her on what to expect and what symptoms are part of PD is great-but to make her feel worse is not productive.
Nana my heart goes out to you!
thanks for your kindness he does have psych dr the person giving him all the meds. I wonder how she can help him when he isn’t consistent in telling her his issues. Dec 2021 he went to ER bec his neck pain was so bad, he failed stress test dr wanted to do angioplasty, he refused and discharged himself. He continued to spiral downward eating nitroglycerin pills like tic tacs. I emailed all his drs PD, Heart, diabetes, psych and said I was going to leave him because he was impossible. His pcp a kid saved his life. He got him to come in did angioplasty he needed double bypass and aortic valve replacement March 2022. Now I realize he can’t be responsible for himself and he won’t listen to me and it’s PD. Has me reevaluating how I interact with him, I’m being patient and kind, he’s being better. Already shared this revelation with my eldest child she was horrified she said why didn’t the drs tell us. She has a better relationship with him. We have a younger child who barely talks to him I need to talk to her. I’m grateful I found this group being pissed off is bad for both of us. Peace
I just joined this group, I use this forum for my own medical issues. Finally decided to check out PD. Last night I read some older posts I was-up until 3am sobbing. When he got dx I did lots of reading surfing the web MJF site etc. As I read the posts I realized I had no idea. A real WTF moment. So many things that piss me off were being repeated in the posts I couldn’t believe it. We met in HS married summer after graduation had our first born when we were 18. Together we made it work. He and I were partners. I could count on him. We had fun we laughed, it was good. I guess the change started when he was 40, he stopped working a job he had due to back issues. He started real estate when real estate was awful. He became grumpy and miserable complaining about many aches and pains all while doing less and less, even things he enjoyed. He got dx around 50. Once he got dx he stopped living he’s angry often at me. I’m pissed I felt like he gave up he won’t do upkeep of house and won’t let me hire anyone. I have been close to leaving so many times. Now I am ashamed horrified and scared $hit. I am a sucky caregiver / nurse ask my kids. Now I realize that so much of this is PD. I am horrible now what, lots of soul searching.
Nana CC,
This is so sad for all concerned. It sounds like your husband had PD for at least 10 years before diagnosis (some neuros say we have it 20years before diagnosis) and as often happens with men his early symptom was depression. Depression is very hard to live with especially angry depression. His lack of motivation especially when he blocks you from taking the initiative is really difficult but it can be seen as a part of Parkinsons.
NanaCC you need to take care of yourself, time out, respite care for husband, someone to off load your frustrations on to, whatever it takes. Don’t make any rash or hurried decisions, you are mourning your future too. Remember once you were partners and had fun together, hold onto the good memories.
20 years before. Now 60. That means in my mid-30s when I complained that I could feel vibrations in the ground... that could be related. It was a frustrating problem at the time for several years. My doctor said it's too long ago. My thought was that my doctor wasn't being curious enough about how things might work.
If you check with your doctor you might find this useful for shoulder. It is referred to as a pendulum exercise where the person supports themself or leans over and loosely swings there arm in a circle to stretch the muscles which hold the shoulder together and in position. Because the muscles are very important in keeping the proper alignment of the shoulder, any muscle that is too tight can cause problems. Doesn't take too long to feel relief (20 or 30 circles), when applicable but you must make sure there are no other complications before trying.
I have no experience with it personally, but several people here have mentioned getting relief of depression and apathy with the Coronet light device.
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