Yes, our Daddy has PD. Yes, he gets a bit forgetful at times, and he has the occasional brief spell of hallucinating with some confusion. And he does stumble at times, but has never hurt himself, and he freezes sometimes and has to give his brain some time to work thru the movements, before actually tackling them like a champ. He does tend to get pretty stiff...especially in the mornings. BUT FOR THE MOST PART, THIS DEAR MAN HAS DONE EXCEPTIONALLY WELL FOR SOMEONE WHO HAS BEEN DIAGNOSED ABOUT 14 YEARS AND LIKELY HAD PARKINSON'S DISEASE CLOSER TO 20.
In fact, up until the last 3 weeks, which started out with him tripping in a hole while gardening and breaking his ankle bone, Dad still mowed with Mom and did what odd jobs around the home he could manage. He chatted and laughed, asked how each person he cares for and prays for is doing, and kept us entertained with his absolute winning sense of humor and his stories of days gone by. A favorite topic? The grandkids and 2 young greats! Loves watching photos scroll thru on his Google Home Hub. Would even still drive Mom to the store and out to eat in our nearby small town. He does have Parkinson's and things have changed a lot, and changed off and on, over the years. But his attitude has been amazing!
Just a bit more background and family detail before I tell you what's happened the last 3 weeks, and how our daddy is doing. Before asking for my group's input and insight.
Mom has taken over a lot of his chores slowly over the years, because he gets very tired easily as PD has progressed. Only recently though, did his neurologist increase his C/L, which briefly helped a lot, but over the following few months, not so much. Our mom goes with the flow and is an exceptional caregiver. My brother and I and our spouses drop in 2 or 3 times a week each, on occasion doing jobs for them like car upkeep, plowing a small garden, fixing something, picking up a need from the store or ordering online, helping sort out an insurance or bill problem. But mostly they say they are doing okay. About once a week I get to play table games with my parents, choosing the ones he still does fine at, his favorite being Yahtzee! Fridays are a favorite hang-out time for my mother and me, as well as for my husband Roger and my dad, who are best friends. The guys enjoy chatting about anything and everything, as Dad feels extremely comfortable and confiding with Roger. They laugh, "sneak in" a big bowl of ice cream and a piece of pizza, "hoping Mom doesn't find out" haha, since she makes good home-cooked meals for them and monitors his diet. They love watching westerns on Fridays too, while Mom and I go out to eat, shop, relax, and buy groceries. It's a great way to get Mom out and away, as well as to give Dad some guy time.
THEN AROUND 3 WEEKS AGO, he hurt his foot/ankle/leg but because of some slight numbness from neuropathy, he did walk on it a few days. Then the swelling and bruising progressed, and Mom took him to the doctor...which began a series of extremely stressful events for this man we love. They sent him on for imaging, only to find out it was broken! And got an appt with a sports medicine bone surgeon that very day in a town further away. Mom felt overwhelmed and so called in my brother to go get this thing done!!! By now, I CANNOT EVEN IMAGINE HOW MY DAD FELT. HOW HE LOOKED. HOW SHAKY HE BECAME AND NERVOUS AND BOTHERED. AND OH SO TIRED. He simply cannot handle things as he used to years ago. Surgery was scheduled for the following morning in that town. (My heart was broken.)
Brother took him, and saw to it all...for as unbelievable as it sounds, he himself had broken that same bone during a railroad work accident a few years back. He could help to see that our dad did the right things to get that ankle back to normal, praise God! Home that very evening, wearing a temporary simple boot to allow swelling to go down before casting. With some pain meds and instructions to keep weight off (!). POOR MAN HAD MADE IT THRU ALL OF THAT. The next day they had him trying CRUTCHES. My nerves were shot and I told Mom, "He cannot do crutches, you know that too! He trips over his own feet!" We learned that Dad's healing would be more complex. Next up, a wheelchair. The house has narrow doors. Disturbing for our father...more and more so. Mom, who needs double knee surgery, giving him baths after 10 minutes of struggling to move the large plastic cover up to his thigh thru a very narrow opening. To keep water out. Then, a couple days later, on to get an actual cast. That was a nightmare. The cast was put on all wrong, leaving our dad in about the most excruciating pain of his life. Rubbed him raw. Knots of cast material all under his foot. So tired, Mom takes him to the ER that night (wish she'd have called me), where they removed it. Following day Brother and Mom have him back to surgeon.....I COULD GO ON AND ON AND ON, WITH EVERYTHING THAT HAS TRANSPIRED. 3 days ago, as Mom and Dad sat eating lunch at home, he commented, "Every single thing has changed for us, hasn't it? Nothing is the same". And Mom was starting to notice mood swings!
The last 3 days have been rather like torture for a loving family, trying to come to terms with it all. Friday's outing for Mom and me left my husband concerned! He was confused! See things more than ever. And then....last night, Dad didn't know he was married to my mama. Maybe she was the waitress.
HELP?!? COULD THIS BE THE BEGINNING OF TRUE DEMENTIA SETTING IN? IS IT A STRESS REACTION THAT WILL RESIDE AS THINGS SETTLE TO NORMAL, EVEN A NEW NORMAL? SHOULD WE TOO BE CONCERNED AS DADDY IS, THAT HE MAY NEVER WALK AGAIN? OR CAN HE HEAL TOO AND GAIN BACK MUCH THAT WAS LOST EVER SO QUICKLY?
THANK YOU FOR LISTENING. I AM MORE STRESSED THAN USUAL TODAY. WE ARE ALL A BIT NUMB.
Thank you! All questions and comments appreciated.
Sandra
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rsacdoolittle
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Thanks for sharing your story. I don't have any answers but I wonder if this situation is creating too much stress on your Dad? I there any chance he could spend a couple of weeks recovering at a rehabilitation facility close by so the family can be there visiting constantly?
Yes, I do believe it is creating too much stress on our dad. Not sure about a rehab facility. But the stress is real... especially for him with PD. Thanks for caring! I can try to look into rehab/rest.
Bolt_Upright, after thinking and praying on it, I honestly believe it would create more stress taking him out of his home. He is improving day by day. Off 1 of 2 pain meds since the bad cognitive episode post-surgery...and mostly taking only Tylenol now. It's very thoughtful that you mentioned a rehab facility, for I never thought once about that, and I will keep it in mind for the future, if needed.
Is he taking any pain meds or anything new? Anesthesia can cause issues in PWP. Look into what they gave him. People have reported that it can take weeks for the effects to wear off. Also, the trauma can cause problems.
Juliegrace, yes of course they had to give him both anesthesia and pain meds. He suffers already from severe back pain probably mostly unrelated to PD, but exacerbated by the PD stiffness and gait. (old injury that never slowed him down much til last few years) What excellent advice. Mom tries hard to get genuine responses on just how much pain he is in, before giving him any. Often the pain is tolerable....the stress is not, I fear. Anesthesia is a definite concern. But also wondering if affects of that should be getting better, not worse? IDK, dear Juliegrace. Thank you for responding and caring and this excellent advice. I hope to look into the pain meds and anesthetic used. FOR ME IT IS SUPER ENCOURAGING TO BELIEVE THIS TURN FOR THE WORSE IN HIS THINKING IS FROM ANESTHESIA AND PAIN MEDS.
I agree about the anesthesia and a potential UTI, it can complicate things for awhile and exacerbate symptoms and possibly create new ones.
For the pain, applying Stopain roll on to the affected areas as needed can be very effective and noninvasive for pain relief. For the back pain you can try mag oil to help his back muscles relax a little and relieve pressure on the spine. If somebody can massage the mag oil in that will help relax the back muscles even more and will release oxytocin which can improve his social interaction again.
If he isn't already using vitamin B1 at higher dosing, you might consider it for him. It has helped improve symptoms in many members on this forum, including cognitive issues including brain fog.
You didn't mention how he is sleeping, but sleep is important in the healing process. If he is having trouble sleeping you can consider melatonin near bedtime at 5 mg in a dissolve in the mouth form to try and improve sleep. If he tolerates melatonin with no problem, consider 10 mg /night as used in these PwPs to good overall effect which may also help in his recovery process :
' Overall, melatonin supplementation for 12 weeks to patients with PD had favorable effects on the UPDRS part I score, PSQI, BDI, BAI, hs-CRP, TAC, GSH, insulin levels, HOMA-IR, total-, LDL-cholesterol, and gene expression of TNF-α, PPAR-γ and LDLR, but did not affect other metabolic profiles and gene expression of IL-8 and TGF-β. This suggests consumption of melatonin may confer advantageous therapeutic potential for patients with PD. '
Melatonin is also useful for broken bone repair as discussed here :
' The findings demonstrated that melatonin has beneficial effect in bone- and cartilage-related disorders such as osteoporosis, bone fracture healing, osteoarthritis, and rheumatoid arthritis, in addition to the control of sleep and circadian rhythms. '
Here is a list of typical products that I mentioned above :
A lot has been written and discussed about B1 on this forum and there is a ton of information on this forum about it and how people have used it effectively. It doesn't work for everyone, but not many things do. It may require significant testing in order to find the right dose and may be a consideration for once he is more stable.
Always enjoy hearing from you Art, as you offer good advice with back-up articles to click on. He has experimented with HDT treatment, but overall did not feel like it was making a difference, so he got discouraged and stopped that. I was proud of him for trying and perhaps I should have stayed on top of it better WITH him, since I was the one who did the research. When things calm down, he may want to try it again, but even if the full-blown protocol doesn't seem to help or spark too much interest anymore, at least taking SOME may benefit?
I will ask him again about Melatonin and take a fresh bottle over there. Trying to create some normalcy in routine right now, mostly with him and mom being at home together without my brother and me and our spouses pouring in and out, which kinda seemed to make him confused and even sad. Sad that we were all doing the jobs he wants to do himself, and the broken ankle bone has cut the list of jobs he CAN do down drastically. I think it is depressing for Dad, and I can certainly understand that. However I will take the new Melatonin over and suggest he take it, soon. Especially with all the health benefits, INCLUDING bone repair! THAT may excite him! OVERALL DAD SLEEPS VERY WELL, SO THANKFUL!!! HE HAS GENERALLY SLEPT ALL NIGHT WITH HIS PD. Occasionally waking up fighting and yelling becasue of a nightmare, and on 3 occasions, going outside...spaced out over a few years time. Possibly due to the nightmares.
My laptop needs charging....
Going to get Stopain and Mag Oil for massage of back. Thank you!
Perhaps this time he might notice benefit from B1 since his symptoms are now different than previously. B1 does something important in that it is a significant inhibitor of the inflammatory mediator IL-17 which is elevated in PwP, but very low or undetectable in healthy controls as discussed here :
If it turns out that he does not tolerate melatonin, there are quite a few supplements that will be beneficial for bone healing such as Zinc, Boron, Vitamin K2Menaquinone7, Strontium Citrate and Berberine to name a few of them. Healing the fracture is the current priority in trying to improve his daily function in order for him to be able to get back to doing those things that are important to him. Berberine is also useful in alleviating neural inflammation as melatonin does in PwP.
He will have to skip VK2MK7 if he is on an anticlotting drug as it can also increase the ability of blood to clot which will work against a blood thinner.
Regarding B1, you might also consider another type of B1 called thiamine mononitrate in a form meant to be dissolved in the mouth. It is what Daphne uses and wrote about in her book. Here is a link to that product :
My Dad had similar experiences after bowel cancer surgery. He could be quite lucid one minute, and then away with the fairies the next. I remember a meeting with a TOP neurologist called in to assess Dad following a complaint we had made to the hospital about 1 doctor nearly killing him with medication errors.
Dad was totally with it for the whole 30 minute exam, and participated fully in the subsequent chat with this neuro, who was very engaged, and even advised me about my PD (the hospital new our complaint was valid). But - she looked at me like I was a confused child and I was forced to agree there was no sign of dementia or hallucination
As she walked out the door Dad turned to me and said "What are you going to do about Sue's keys?"
"What? What about Sues keys?"
"She's been phoning me all evening - she's lost her keys"
Well,of course, she hadnt!!
We thought he would never fully recover, but after a couple of months at home,he did
HOW ENCOURAGING WinnieThePoo. I am seriously believing this is surgery and stress and surgery meds related and will go away! Thank you! Glad your dad is doing better!
Check for bladder infection. It causes delirium and is very common in elderly people regardless of their health status, maybe also too much extra painkillers for his body weight. I have young onset PD for many years. Have studied the effect of the meds thoroughly and also have to use a wheelchair now. Didn't want to but falling caused broken bones and difficulties.
BMichalos, I am sorry to hear about your early onset PD. Thank you for sharing what you are learning. It is helping make a difference! I have wondered if Dad is drinking enough water, since it is so difficult getting around now, even to use the bathroom. I wonder if he may be avoiding drinking as much to try to cut down on his restroom trips. Broken bones are a very real problem for PWP, aren't they? Something we don't think too much about at first. And yes, the pain meds were affecting him, we believe, although he has taken the bare minimum, pretty much. Mom talked to their General Prac this morning who took him off of one and he has not had anything buy Tylenol today, praise God! Thanks for caring and may you have a wonderful day...one thing at a time!
My heart goes out to you and I empathize with you as someone who lost his uncle to Alzheimer's. I am glad that you're raising the alarm bell early and if the diagnosis is positive at the initial stages of the disease, there are new interventions available in the USA. You might. have to go to the closest university hospital for that but start with your father's neurologist. Unfortunately for my uncle, we were not as observant or knowledgeable about dementia.
Granted, it is probably nothing to worry about possibly, but as I said, early diagnosis has much better outcomes. There are tests available these days that can determine if there is anything to worry about and as I said, there are early treatments that can attempt to slow down the progression if the diagnosis is positive.
I send my prayers to you and your family and your dad.
Pdpatient, Thanks for caring and responding, it means so much. And for the prayer sent to God for us, I know he heard. Sending mine to you and yours now. Being that Mom talked to their very knowledgeable General Prac this morning (his parent had PD so much research he has done, and extra special concern for PWP), and the doc took Dad off a pain med from surgery, leaving him on only Tylenol and an occasional 1 other (none today), we hope this is enough for now. But I will take to heart this advice on early detection of dementia/short term memory loss/Alzheimer's. He also did cut back 1 dose on his Zandopa to see what affect that has, Mom said. Dad has gotten pretty wise about an occasional adjustment of this. Sometimes changing that up helps! We will def inform his neurologist at next visit, or EARLIER if improvement does not continue. Thanks for the info on the benefits of early diagnosis! Wisdom was gained from your dreadful loss. So sorry to hear of your uncle.
As your text is a little too long to read and possibly difficult for some members to read and digest, I have taken the help of AI to summarize and suggest possibly next steps. I hope that helps as well. Here's the summary
Here is a summary and analysis of the article:
The article is describing the situation of the writer's father who has Parkinson's disease (PD). Some key points:
- The father was diagnosed with PD around 14 years ago but likely had it for close to 20 years. He had been managing it relatively well until recently.
- Around 3 weeks ago he broke his ankle while gardening, which began a series of medical events that have been very stressful for him.
- He underwent surgery to fix the broken ankle but the recovery has been difficult due to his PD and other physical limitations. Things like using crutches have not worked well.
- The writer expresses concerns about whether this ordeal could be triggering dementia symptoms on top of his PD, as the father recently showed signs of confusion and not remembering he was married.
- The transition to needing more help has been difficult for both the father and mother caregiver. Everyday tasks are now much more challenging.
- The writer is asking for insight on whether the recent symptoms could be stress-related versus a progression of the disease, and whether the father may regain abilities lost during this period.
In summary, the writer is describing how a serious injury has exacerbated their father's Parkinson's symptoms and care needs, causing a very stressful adjustment period for both the patient and family caregivers. There is concern this may be inducing or worsening cognitive issues as well. Input is sought on recovering abilities lost due to the short-term impacts of the injury and surgery. The tone conveys a family feeling overwhelmed and in need of support.
////.../////
And here's is the response from AI about possible next steps :
Based on the details provided, here are some suggestions for next steps:
- Consult the neurologist to discuss the recent changes in symptoms, especially the signs of confusion and memory issues. Ask for a formal evaluation and assessment for possible dementia or cognitive decline.
- The neurologist can administer specific tests to evaluate memory, thinking abilities, orientation, etc. Standard tests include the Mini-Mental Status Exam (MMSE) or Montreal Cognitive Assessment (MoCA).
- Obtain any past cognitive test results, if available, for comparison to current functioning to help determine if this represents progression or a temporary change.
- Request recommendation for any further testing like neuroimaging (CT or MRI of the brain) to rule out other causes for changes besides PD progression.
- Discuss non-pharmacological strategies to help manage stress and caregiver burnout which could be exacerbating symptoms temporarily.
- Consider a short-term trial of increased medications for PD if under-treated, to see if better motor control helps cognition. But monitor closely for side effects.
- Contact the local Alzheimer's Association for informational materials and support resources to help the family cope.
- Prepare for the possibility that dementia may now be present by learning strategies to maximize the patient's quality of life and safety. But remain hopeful full evaluation may show temporary changes.
Seeking medical expertise can help determine the nature and cause of the cognitive changes, which is important for proper management and support of both the patient and caregivers going forward.
Thank you pdpatient and Al for summarizing my description for me!
Our only concern for getting Daddy tested by his neurologist for dementia RIGHT NOW is that this will cause even greater stress. It was 2 days ago that he was at his worst cognitively, when he thought Mom was his waitress. Yesterday he had improved some and today even more so. With so many doctor visits for the broken ankle, and so many changes, I dread to think what more visits might do to him and all of us as his family.
What do you all think about waiting for the testing until his next neurologist appointment, which shouldn't be more than a couple months away? I will indeed mention this to Mama very soon and get her opinion on timing. I'm sure our family agrees with you that the testing should be done and fairly soon.
I've spent a good portion of my day studying PD and memory loss/confusion, and have watched YouTube videos by "experts" on dementia to learn more about it and how to communicate with someone during a bout of confusion.
Right now Dad and mom are home playing Yahtzee, and I just talked to both on the phone. He was his old self.
Sure, a few months should not make a difference. It is slow progressing like Parkinsons, except that the results of the progression is hard to watch and accept. It often starts so innocuously just like Parkinsons. My father and my uncle were very close and occasionally met up for dinners and would go on day trips. They were both in their 80's.
One day my uncle didn't show up for dinner and my aunt couldn't explain and said that he forgot. My father brushed it off. After that, he didn't show up for a day trip and he could not be reached by phone which was early in the morning. My uncle said that he had overslept and said that he couldn't remember having agreed to that day trip. These were quite serious signs in retrospect because my uncle was a stickler for details and punctuality and always maintained a diary.
Small things like that started becoming slowly more frequent and my aunt started getting quite embarrassed and defensive. My dad and my uncle started having some friction and some uncomfortable moments and exchanges. It took a while for my cousin to figure out what was happening after which he took my uncle for a diagnosis. My uncle was in peak health otherwise and rarely saw a doctor. So, he didn't have regular doctor visits which complicated the problem no doubt. As a Parkinson patient, I see at least someone in my care team or extended care team regularly and their familiarity with me allows them to spot anomalies earlier.
Anyways, although he received the then existing medications ~ 2010 to 2018, there wasn't much better options. The last five to ten years have brought about new drugs and aggressive research funding for Alzheimer's which is promising especially when caught early.
I can't offer anything close to an opinion. But by observation, forgetfulness especially stubborn forgetfulness is the better indication of Alzheimer's rather than mistaking someone for somebody else. Seeing or mistaking someone who doesn't exist in reality in the moment is more along the lines of hallucinating which is more typical of Parkinsons.
I am sure you will be able to sort it all out soon.
PdPatient, he does occasionally have hallucinations, but generally he has been okay. Some days better than others. I think I may understand what you are saying in your last paragraph. Do you mean that the types of behaviors I have mentioned in him since surgery may just be PARKINSON'S STUFF DURING A STRESSFUL PERIOD? Instead of true dementia/Alzheimer's setting in? Just to clarify? Thank you!
Yes. That would be my layperson opinion based on my observation. I wouldn't be overly alarmed only because Alzheimer's //Dementia doesn't manifest itself overnight. Just like Parkinsons doesn't.
Parkinson patients experience a variety of emotions and feelings as well as a range of behaviors complicated by instant anxiety which may not be explicitly apparent. Memory loss can be temporary due to the anxiety. I know that because it has happened to me during a period of psychosis.
However, mistaking your mom for someone else is not really memory loss. It could be due to a lot of reasons that are probably more relatable to Parkinson. Such as confusion, hallucinating etc. A combination of Medication, the condition itself and extreme stress can combine together to produce unexpected behavior.
For example, I sometimes become so stressed out and overwhelmed with my condition that I start bawling all of a sudden for no reason. It used to alarm my wife at first but not anymore. I am glad you are there for your father and he is indeed very lucky and I am sure very grateful for your help and that of of your entire family.
My husband was in hospital 3 times due to a uti. Then, just being in the hospital not doing anything except being in bed, he would have moments when he's seemed forgetful, a little out of it.
Surgery, PD and anesthesia - can cause some dementia. Folks without PD and have heart surgery may get temporary dementia. So, it isn't uncommon.
Definitely talk to your neurologist. Tell them if your Dad is forgetting the past, or if he has trouble remembering new things or both. Read the Summary Hospital Discharge notes to see if there is info from Anesthesiologist and the type of anesthesia given.
Thank you LindaP50. Calling Mom and Dad now to stress drinking more liquids, since your husband has had 3 hospitalizations from UTI's. And I can look at his discharge notes within next 2 days to see which anesthesia was given at surgery.
You are the 3rd to mention going ahead and contacting his neurologist now, so I am listening! And yet hesitant. I am hoping to wait and give him at least a few more days of "normal home time" before stirring him up again, since we truly suspect this new bout of confusion and memory loss is due to the trauma of breaking a bone, having surgery, new caregivers, loss of his "normal home time". This morning he came off a pain med from his surgery pain. Trying to be wise and loving, together. 🤓🤗🫤
Write down his meds schedule before and after and compare. What has changed?
My husband became very confused when they put him on the long acting madopar which was at a stronger dose. At night he had no idea what was going on . They said it was progression. I eventually put him back on his previous meds and it reversed. If things change suddenly after a change in meds, even an increase in an old one I would first be wondering if it’s the meds, after that an infection. Both reversible.
LAJ 12345, great advice, thank you so much! We will do this, listing his meds and amounts from before surgery and meds and amounts right now to see what has changed. And then, look for infection. Thank you!
I know when my grandmother was put to sleep it made her memory get extremely worse and her dementia went from mild to extreme. I’ve noticed with myself I’m forgetting things since I was put to sleep 10 months ago. People have to tell me over and over or I have to write down things and unless I look at notes I forget. I do suffer from narcolepsy and sleep only few min at time waking up constantly never have slept a solid 8 hours in my life anyway it’s all brain related. But anyone who has early dementia and can avoid surgery which I know most can’t . But I just know after surgery it makes it worse and can cause memory problems.I pray he gets better. God Bless
Fefe09, thank you so much. We are slowly figuring out what needs doing and trying to decide order and timing so as not to make him feel less in control, thus possibly making the confusion worse. I am scared I admit, but God is faithful and hasn't let me down yet. He will strengthen me and encourage me. I look forward to spending time with my daddy however he is on any given day! We are "studying up" on some ways to keep him active during a hard situation and to keep him from just sitting doing nothing and feeling defeated. Coming up with some new games, activities, things to talk about, and ways to help things seem more normal again. He is one awesome guy! Everybody loves this man, I am blessed to call Dad!!!
Fefe09, so sorry to hear of both your and your grandmother's memory-affects post surgery/anesthesia. IF EVER TIME TO PREPARE WELL BEFORE SURGERY, AND DISCUSS PD WITH SURGEON AND DOCTORS, IT IS SO MUCH BETTER! Emergency surgery like his causes more problems I am finding and also more unknowns. Get better soon!
I can hear your devastation and panic. My hwp had an emergency operation in 2019 and had sudden episodes of hallucinating. I was crying and thinking whether that was the new normal. But it has gone away. There's other reasons. Pain killers in hospital are the most likely cause, specially with that painful story you're telling, they'd given him strong meds. Anything with opioids we avoid, but also antihistamines like Phenergan will do it. If my hwp gets strange I always suspect infections. For example he may have had a catheter in hospital, so make sure he's tested for urinary tract infections. Hope that gives you a little ray of hope and out of that dreadful sinking feeling.
Hi rsacdoolittle! Does your dad go to a movement disorder specialist? Your family seems so close and loving. It does take a lot of extra energy to do what you all are doing and I’m sure your dad appreciates it. Remember to take time for yourself also! 🥊
LagLag37, he has a NEUROLOGIST, but unfortunately no MOVEMENT DISORDER SPECIALIST. However I have mentioned to them on a few occasions that I have found a Dr. Taylor Bear not far from us, who was recommended by someone here on this website.
You mentioned taking time for ourselves...honestly, it is taking me some time to get used to this idea before jumping back in to visits. I have spent the last few days researching and seeing my counselor, for I am having anxiety concerning this turn in Dad's health. I am dealing with it and in a couple more days, I plan to be back fully involved. I would never desert my parents! Mom knows I am taking a few days to figure things out.
My husband and I are picking up a UTI over the counter test kit tonight. We will start there.
Some more sad info. DAD WENT OUTSIDE IN THE MIDDLE OF THE NIGHT LAST NIGHT, so we are ordering door locks right now online. I still cannot help but believe this dementia-related mental state will fix itself some after things return to normal with his broken ankle. I pray so. Thank you so much!
My husband had a very bad reaction. After neck surgery. I actually thought he was going crazy , It turns out he had undiagnosed PD.
2 years later, he had lumbar surgery. I told the anesthesiologist about the episode and they were very careful. What meds they used. Cognitively, it was a set back for about 6 weeks..
As difficult as this is for your family, it could be a temporary setback. Keep him safe and make sure you see your movement specialist. You can research online how to get the anesthesia drugs out of your system faster. For instance, if you had a sauna, help your body detoxify.
Pain medication can slow your digestive system and the medicine would not work as well for PD possibly.
Hopefully, you will report good news at a few days..
Sydney75, I can attest to the fact that post-surgery pain meds can slow one's digestion, since my own surgery (complicated hysterectomy). Slowed digestion caused a whole slew of problems for me, and I felt much relief in every way once it sped up again. Thanks for that reminder!
I am sorry to hear of your Dad's difficult time. As others have noted, it is common for PwP to have cognitive issues post surgery. I am going to have heart surgery in October and, in preparation, have been reading everything I can find on post-op problems that I and my family may face. What I have learned, mirrors your Dad's experience. There are two pieces that contribute to the likely negative outcomes: 1. the "insult" itself: how invasive was the surgery? how long was the patient unconscious? how well was the level of dopamine maintained during this period? what anesthesia was used? immediately following, how was pain controlled? 2. the post-op period: the issue post-op for PwP is inflammation. Inflammation in the site of the surgery but also inflammation overall. The surgeon is unlikely to have much control once the patient enters recovery and then is moved to less intense hospital care so families have to be advocates if the patient can't advocate for themselves. From what I have read, inflammation can spike higher based on things like the level of pain in recovery, patient upset at the degree of disability from the surgery, failure to control dopamine levels, reaction to post-op pain meds, just being in the hospital or moving from hospital to rehab.
My surgery is planned, not emergency (much harder to manage), so my surgeon and I have had a long talk about this and I am satisfied with the plan to manage both phases: guiding principle was the best possible outcome for me while minimizing the insult and managing the inflammation as best we can.
It sounds to me like your Dad's post-op inflammation is subsiding. He is at home and surrounded by a loving family. I am sure that gradually returning to your usual routines of caring for your parents will help reassure him that the crisis is past.
I hope that is helpful....best to you and your family.
Jana86, sending prayers to God for your surgery and recovery! I believe a lot of good will come out of your PREPARING IN ADVANCE! Doing the research and talking to the doctors. Dad's broken ankle...from one evening to the next morning, he had zero time to prepare in any way, and being it was surgery by a sports medicine surgeon, he may never have done surgery on a PwP? If ever another surgery, we will do like you are doing, and try to be prepared. God bless you and yours!
Thank you. I do think my docs appreciate my raising of these issues. I am suprized at how little is known about PD issues by med professionals with other specialties. This ignorance can be life threatening when surgery must occur quickly, as in your Dad's. I just read the article posted by Sydney75 below. I am printing it out now and will bring it with for my pre-op exam in late Sept....great, comprehensive content of what should be thought about and planned for.
My HWPd having back surgery soon. I have researched the anesthesia portion and know then some drug should not be used, especially specific drugs for nausea. What are you doing post surgery to reduce inflammation? I have read about a bunch of supplements, but we are limited because he's having a spinal fusion done robotically, and you cannot take any antiflamatories including natural ones like a tumeric for 3 months, post surgery. There is a diet that is recommended but I haven't found a lot else.
Very soon we have to stop some of his supplements like ginkgo before the surgery. Because they have antiplatlet properties.
I would be great for any information to you could share that I could use to help him.
Syd, I will have to ask Mom/docs about inflammation...is he on a med for that? I do not know. I know sometimes the "pain med" is actually an anti-inflammatory. But he is nearly off all pain meds now except Tylenol. Good questions and I HOPE AND PRAY ANY INFO I HAVE MAY OFFER SOME SORT OF HELP FOR YOU DEAR HUSBAND. PRAYERS FOR HIM!
Vitamin D is a good anti-inflammatory I've been reading about on here, Sydney75, and when you add Vitamin K to it (can get both in one pill), this combo helps strengthen bones, in case of ever a fall.
Agree with those who say look for urinary tract infection. He needs to see his primary doctor or urgent care right away. Could be dementia, but the timing seems a little off. Could definitely be delirious from a medical cause. Urinary tract infection is one example of a reason for delirium
Astrojupiter, I am taking a test kit for UTI to my parents in the morning. If anything shows up, we will call his primary care doctor for an appt right away. If not, likely we will alert his doctor anyway to tell about the home kit test and ask if he needs to come into the office for UTI infection test. Also getting ready to call his Neurologist about what is going on. (Hoping to switch his current Neuro for one with a special interest and extra training in PD and other movement disorders.) Our father wondered outside last night which is scary and harmful, so we are ordering special door kit locks for dementia/sleep walkers. Still hoping and praying this decline mentally is a passing thing from surgery, anesthesia and pain meds. Thanks for responding.
Wonderful resource! Thanks for sharing. I am working on my own list of what may be helpful to reduce inflammation pre and post op....research gap there for sure!
Based on my hubby's recent traumas and surgeries, I believe:
1. Age is very much related to symptoms you described, especially after a trauma, and a shock to the body (surgery).
2. UTIs can cause worsening of congition to PwP. Hubby had several of them over the course of one year, that is how long he was on a catheter due to a fall last year causing him aspiration pneumonia, inability to void and inability to swallow. He was on a feeding tube for several weeks.
3. Type of anesthesia. Hubby had a prostate surgery (HoLEP). Surgeon's team wanted to use general anesthesia, and I flatly refused it. I asked them if they can't administer regional anesthesia, we would choose another hospital that it would. Changed their rhetoric and accepted to administer what we asked. Still the body had to go through a shock. An antibiotic caused him allergic reaction and as result his left leg developed ulcer (lymphedema of lower extremeties). The infection was really, really bad and his wound care doctor admitted him (I got very scared, as if the ulcer couldn't be treated, amputation of the leg should be next).
4. Adding all of the trauma and infections he has had over the last year, his cognition has declined although he always recuperates. His overall decline is very obvious because of everything he went through since last August. There will always be a cause for a PwP to decline--it's the type of a monster we all fight!
Slow down, take a few hours to yourself. There is no emergency at this time. You may have to be patient . Things take time in PD and your father has been under a lot of stress and has been given some very strong medication that can have nasty temporary side effects that take some time to wear off. Your father is picking up your signals of anxiety and also from the rest of the family. You are all trying to do too much and he sees that things are different and that sets him back.
Let him rest, talk to him but not about any thing important or about your condition or fears maybe talk about the great things his grandchildren are doing or something that was happy times in the past. Reassure him with your laughter
In a few weeks things will be clearer and you will be rested and ready.
Do not rule out continued Professional care options such as a nursing home or at his home because your mother needs attention and help. Put yourself in her shoes , can she continue the pace and the roll or is it time to get some full time help.
Gymsack, I haven't been on this website for a few days, but when I opened it, there was your reply. This is what I needed to hear today. Thank you! I posted an update as well.
UPDATE on our father's BROKEN ANKLE, EMERGENCY SURGERY, and "DEMENTIA" ONSET...
Dad's cognitive issues since the unplanned, immediate ankle surgery have continued and even worsened, but at times he is doing well in his thinking. He has trouble off and on knowing that he is married to Mom, and the last couple days has said he needs to ask his kids (my brother and I of both parents) where his wife is. Among many other confusions. Mom is very, very tired and frustrated. The home UTI test was negative for infection and he exhibits no signs of UTI. He has had no pain meds in a few weeks other than some Tylenol.
The ankle bone has healed some, but not extremely well, since he forgets and walks around on it, and has even been outside once during the night on it. To prevent night escapes, my husband installed a special doorknob that prevents him going out without a code or key. On the other door which Dad has never gone outside through at night, we have a wedge there at nighttime. If new knob proves a good one, we will order another like it very soon. This hopefully will help Mom be able to rest better.
As far as his ankle goes, he now has permission to walk as opposed to wheelchair, but MUST WEAR THE BOOT 24/7, AND DAD DOESN'T LIKE IT AND OFTEN REMOVES IT. He was supposed to start PHYSICAL THERAPY TWICE A WEEK, BUT HIS PD CONFUSED THINKING HAS CAUSED US TO POSTPONE THERAPY BRIEFLY. I am awaiting a call-back from the Neurologist to find out if the PD prescriptions need adjusting. His scheduled appt is in one week. We do not want to hurt his ankle bone by ignoring physical therapy, but Mom is exhausted, I have been sick, and the son and son-in-law work during the days, the daughter-in-law part time- and she also helps her own mom. Praying a short delay won't complicate the bone's healing.
My main task right now seems to be finding out if there is some type of home health help available. Insurance doesn't want to go any further than surgery, prescriptions, and providing that wheelchair. I have been advised to call or go to the offices of some possible home health care providers. But we will see what Dad's neurologist says first in one week and try to start his ankle physical therapy.
As I write as my parents' daughter and partial caregiver, I also have to be careful taking care of myself. I was diagnosed with Major Depressive Disorder (some anxiety) while in In-Patient Treatment in 1997. I am still under my psychiatrist's care and in counseling off and on. Although I am a generally very happy person with my depression well-managed, it is during very stressful situations and changes that my own symptoms get worse. I suppose this is most of our stories...in one form or another, concerning health.
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About once a week I get to play table games with my parents, choosing the ones he still does fine at, his favorite being Yahtzee! Fridays are a favorite hang-out time for my mother and me, as well as for my husband Roger and my dad, who are best friends. The guys enjoy chatting about anything and everything, as Dad feels extremely comfortable and confiding with Roger. They laugh, "sneak in" a big bowl of ice cream and a piece of pizza, "hoping Mom doesn't find out" haha, since she makes good home-cooked meals for them and monitors his diet. They love watching westerns on Fridays too, while Mom and I go out to eat, shop, relax, and buy groceries. It's a great way to get Mom out and away, as well as to give Dad some guy time. 
So tired, Mom takes him to the ER that night (wish she'd have called me), where they removed it. Following day Brother and Mom have him back to surgeon.....I COULD GO ON AND ON AND ON, WITH EVERYTHING THAT HAS TRANSPIRED. 3 days ago, as Mom and Dad sat eating lunch at home, he commented, "Every single thing has changed for us, hasn't it? Nothing is the same". And Mom was starting to notice mood swings! 
What my emotions did to me last night.
I just received some unsettling health info about my hubby with PD and related severe dementia and I just don't know what to do.
Not too smart
Help need sleep advice 
Rotigotine ( Neupro ) ? 
