PD or LBD and what about me?

My husband of 12 years was diagnosed with Parkinson's four years ago at the age of 51. It was never a definitive diagnosis and depending who we see, I can tell that they have doubts. We're in Canada, so no one will give him a SPECT or PET scan to even attempt to confirm a diagnosis. His on and off episodes are so dramatic I can barely describe them. He is cooking a ham dinner and decorating for Halloween one day and the next he is flat on his back, shaking in bed for two days. This wonder drug Sinemet has sporadic effects on him...sometimes we can't follow a marked improvement after taking them, sometimes it does seem to help a lot. I can't make any sense of this disease. He typically looks amazing at the doctor's office so they all just think I'm nuts. I have video, but neuro refuses to look at it??? Some days he never really fully wakes up...a walking zombie, just going through the motions of life. Neuro Psych gave him Concerta to wake him up which helps a lot, but too much made him really nasty/angry and threatened our relationship for good. My question isn't really about him, but me...How do I live like this forever? He shows no empathy toward me what so ever, as if his actions have no impact on me and our young child, he is apathetic toward life and is a-sexual. I'm also wondering if this might be the early stages of Lewy Body Dementia. He was playing a video game for 16 hours a day when on Neu Pro patch.

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  • When he takes his sinemet is very important. It completes for protein receptors in the gut so it is important to take it one hour before or two hours after a meal containing protein. If he is taking it with food at times, that could explain his off periods.

    Is there a Caregiver Support Group near you? It would be very helpful for you. There are also some online forums at NPF.org.

    Do not know why the doctor won't listen to you. Is he a Movement Disorder Specialist or a general neurologist?

    There are ups and downs with PD for both of you but he seems at the extremes of them.

    Sorry you are going through this. Do you have any family support?

  • Hi wifeofparky,

    Thanks for your reply. I will try to manage his med times more precisely over the holidays when he is not working to see if we can't find some relief.

    I did go to an Alzheimers support group for a while which was helpful when I thought husband may have some form of dementia...but hard to find PD group in my area, most are for people in there 70s who don't work which is hard for us for timing.

    We are seeing two movement disorder specialists...one I like but husband looks so good in her office she thinks we're wasting her time, one is an arrogant asshole. When he is "off" I couldn't even get him out of bed and have to cancel appointments, so they only see him when he is "on" and think that he is good to go.

    I have family and friends that don't get it. He looks fine when they see him or he is in bed. Nothing urgent for them. Some of my friends just think that he is mean and that I should leave him. It is very isolating living with a spouse that is too sick to love.

  • It sounds like he might have depression.

    Very difficult for you but maybe you can get him to a GP for that?

    Also can you change neurologist? You need someone who actually cares.

  • Neuro Psych. did think that he was depressed and put him on meds for depression which made him much worse. Husband said that he isn't depressed at all and has never felt depressed, he simply doesn't feel anything, total apathy. He has a major sleep disorder so all these pills just make him much more sleepy to the point that they threatened his ability to work even part time. He is seeing two neurologists, one is an arrogant "B" the other I like but she has only seen my husband when he is "on" so she thinks that he is just fine.

  • It sounds like a really complex issue and awful for all of you. I hope you can find a solution soon. Sorry I can't be of any help, but hopefully silvestrovs info will help.

  • I wonder if the Parkinson's Foundation or the social worker in the dr.'s office can serve as an intermediary between you and the neurologist(s)?

  • Dopamine is the neurotransmitter for both movement and reward/pleasure. With the lack of dopamine movement is compromised as is the ability to experience pleasure. Such a condition is called anhedonia - the lack of pleasure and anxiety and depression are common non-motor symptoms of Parkinson's disease. Here is an article which addresses this issue:

    Anhedonia in Parkinson’s Disease: An Overview

    "This article presents an overview of anhedonia, the inability to experience pleasure, as noted in Parkinson’s disease (PD). This symptom may be a consequence of damage to the dopamine reward systems and dopamine-related neurochemical changes. Authors discuss the clinical definition, measurement, and relationship with depression, as differentiated from apathy, and present the concepts of anticipatory versus consummatory anhedonia, especially as they manifest in PD, and the occurrence of hyperhedonia, as related to impulse-control disorder and PD treatment."

    neuro.psychiatryonline.org/...

    You stated your husband is on Neupro patch and this, I believe, explains his 16 hour/day video game fixation. Neupro is a dopamine agonist, a drug which acts as dopamine on brain receptors, and some of the behavioral consequences of using dopamine agonists are impulse disorders. Impulse disorders caused by dopamine agonists can take many forms which include, food disorders, hypersexuality, compulsive gambling, and shopping compulsions. In this case he is obsessed with video games and here is an article about impulse disorders and Neupro, etc...:

    drug-injury.com/druginjuryc...

    Basically I think you are at wits end because his doctors have followed the appropriate steps of therapy and no alternative treatment options available. His apathy, etc.. largely stems from a known dopamine deficiency and until dopamine levels can be normalized he may remain in his current state. If you are willing to try an experiment there is a product called Zandopa. It is of Indian origin and it has been tested on untreated and treated PD patients and was showed to improve their conditions (HP-200 is Zandopa):

    An alternative medicine treatment for Parkinson's disease: results of a multicenter clinical trial. HP-200 in Parkinson's Disease Study Group.

    ncbi.nlm.nih.gov/pubmed/939...

    The other issue you mentioned was to question whether he has LBD versus PD. Neurological conditions are notoriously difficult to diagnose and the only real way to figure out what someone has is with an autopsy - seriously. Robin Williams was first thought to have PD and upon autopsy he was shown to have LBD. How his behavior differed from PD patients is he had hallucinations and normal PD medications, like Sinemet, can make them worse:

    Robin Williams Had Lewy Body Dementia: Report

    webmd.com/mental-health/new...

    So does he have hallucinations and did sinemet make them worse?

  • Yay silvestrov is back. Just like Merlin, off on one of his quest (to make money) and back toooo....... whats this.

  • VIDEO GAMES ????? MY BELOVED MARIO KART ?????? NO!!!!!!!!!!!!!

    see below

  • PS. It appears video games are also leading to desensitization and decreased dopamine levels. Prior to having PD my father obsessively played video games to the point his elbow swelled up. Here is a good article about the subject:

    ncbi.nlm.nih.gov/pubmed/205...

  • Dear Silvestrov,

    Thank you for your incredible insights. I don't know who you are but your picture makes me imagine a super hero of sorts...LOL.

    I totally get the inability to experience pleasure for some PD patients. My husband has been able to describe this, he says "I just don't feel anything". This is muuuccchhh different than depression which is all about guilt and regret and sadness and sometimes apathy...but I just know that he is not depressed, because I am! and we are total opposites. I am depressed from living with someone that can't experience pleasure. I simply can't make him feel anything..I hug him and he doesn't really hug me back, I kiss him and he doesn't kiss me back. I realize that he is sick but all this rejection just makes me cry. He is still working part time which is a miracle in itself. We have a young child which makes this so painful. I find that she is getting cold hearted from her experiences. He was such a kind hearted man before, would do anything for anyone.

    I get the LBD versus PD autopsy diagnosis...but I can't stop thinking that he might have LBD. He had one episode where I thought he might be parting from reality. He got violent toward me and said that I was stealing all his money (which he doesn't have) It lasted for a couple of days, anger and suspicious about my motives...really scary...but I put it down to too much Concerta which causes aggression. I reduced his dose and he has never had a repeat of that..but I keep waiting for it, if it happens I'm afraid that I will have to pack our bags. He has never imagined bugs, or people or anything like that, although his mother has who is in a nursing home with PD. So worried that this might be genetic and that our daughter may have.

    Video game article was very interesting. He has played for many years, still plays daily but not the 16 hours a day that he did when he was on NeuPro patch, neuro took him off because of gaming...but put him on sinemet which they don't like to do early for a 53 year old guy with a whole lot of suffering ahead of him.

    I will try to control his med timing over the holidays to see if he can get any improvement.

    We're seeing a Movement Specialist, Neurologist, and Neuro Psychiatrist to treat him for the depression that he doesn't have and give him drugs he doesn't need that put him to sleep and make him worse. Virtually any drug seems to make go to sleep, which is his primary issue, has tremor one side, but sleep disorder has been life altering. Another Movement Disorder Specialist Neurologist that doesn't know that we are seeing another Neuro, but drugs haven't differed and we are always upfront about what he is on. She thinks he looks just fine, and the less drugs the better, hates the Concerta option for sleep. and of course, the completely incompetent GP who is hitting on me on the side.....but I go along with it hoping to get better care for husband, ughghghghhghgh!

    His sleep issues are really profound. This was his initial issue, debilitating sleep. Threatened his job, driving, life....Put him on Concerta which is the only thing that woke him up. Now he just takes it when he has to go to work, part time. The sleep issues make me think that this might be LBD as well. He gets so out of it mentally, he can't concentrate, or plan, or manage his day....just useless and then falls asleep. Sometimes the gaming would keep him awake. I try to have interesting conversations with him, because if he is totally engaged he is fine, but if he is in a passive environment or not really interested he checks out mentally and then has to lie down.

    Thank you for reading all this. I will try your alternative suggestions.

    I guess I really am the only one in the world that is really, really impacted but his inability to love. What a hideous disease. It robs you of your humanity. I miss him.

  • That is one of my favorite paintings also.

  • Gimba, chances are that your husband has an X Box or Play Station, but if he has a WII U let me know and I will school him in the art of the race. He might get a kick out of racing someone else with Parkinson's.

  • Not quite a super hero yet...just an artist who reads too much. My father had PD and I witnessed many of the symptoms your hubbie has demonstrated up close for more than a decade. He also had bipolar so he had those issues too. As for yourself it sounds like you are clinically depressed and this can be treated. If you go to a psychiatrist they are going to prescribe a SSRI which has side effects like a diminished sex drive and you may lack feeling day to day. Years ago I was prescribed Paul and that is what it did to me. Depression, being a symptom of a physical problem, was not really helped by Paul so I weaned myself over it and tried other things. Provided you are not pregnant, have bipolar, schizophrenia, melanoma, hyperthyroidism or high blood pressure you may want to try a capsule of free form tyrosine upon waking in the morning. Tyrosine is a neurotransmitter which produces other neurotransmitters including noradrenaline and does have anti-depressive affect. Just a 500 mg in the AM may give you the boost you need. Capsules are better than tablets and orange juice helps to metabolize tyrosine better. I think you are in a 'funk' and need to be pulled out of it. Once normalized you may be able to go off of it or just take it occasionally when needed. Tyrosine like levodopa should not be taken with food and especially protein destroys it's affect. So on an empty stomach at least 1 hour before a meal is best. If needed it can be taken in mid afternoon say 4PM and this depends on how you react to 1 dose. I have taken tyrosine off and on for years and now have grown intolerant to it. It just stresses me out so I don't take it any more.

    I looked up LBD and yes excessive sleep is also a symptom of it:

    "This research suggests that daytime sleepiness is a distinct symptom of DLB that is independent of disease stage or the presence of the primary symptoms of DLB, and can be distinguished from AD."

    lbda.org/content/daytime-sl...

    But it is also a symptom of PD:

    google.com/search?q=excessi...

    From reading about the difference between PD and Parkinson's Disease dementia + LBD it seems hallucinations a a big marker to differentiate one from another. Robin Williams had LBD and perhaps you should read about his (well-known) symptoms to see if it sounds familiar.

    google.com/search?q=robin+w...

  • Dear Silvestrov,

    Sadly, I am in need of a super hero, so, for me, you are one for now...LOL. I am an artist of sorts. My work makes me pretty happy but I'm not sure that I am up for many years of living with a spouse with possible DLB. Relationships aren't really possible with this hideous disease I'm afraid, but I guess I don't have much of a choice. What's worse is his doctor's are annoyed at him for missing appointments and generally not being too interested in his health...essentially they are annoyed with him for not having any motivation and apathy which is part of the disease that they are supposed to be treating. There ignorance is astonishing to me.

    We went to this Movement Centre that has various specialties all under one roof to treat patients with PD in a multi disciplinary environment/approach. I was so excited, two year waiting list. We spoke to a pharmacist that told me that her ex boyfriend played video games and that gaming excessively and PD have nothing in common....great, nothing like being objective! They had no sleep disorder specialist on board, because who has sleep issues and PD, right???? ughghgh! and then a dietician who criticized him for not being motivated to stop eating....WHAT A COMPLETE WASTE OF TIME!!! but we could take dance lessons on a Monday afternoon when we are both at work.

    When he was aggressive I went to his neuro psychiatrist and camped out in his office until he would see me because I thought that the Concerta that he was on to make him wake up was making him angry and violent. When I finally saw this psychiatrist, he treated me like I was an unwelcome intruder and told me to call the police. Super helpful, no wonder the copps shoot people by accident, with doctors like this one helping them out.

    So, yeah, I am depressed, who wouldn't be? Taking Citalopram which has made me flat, fat and tired but I stopped crying three times a week, so I guess this is an improvement, until I get a disease from gaining thirty pounds...Is this all worth it? I can't help him, and he doesn't want me to help him anyway, so what's the point? I want a new life so bad. I've been at this for seven years, and this is the good part. Our young daughter deserves a better life.

    I know this sounds awful, but I think that when he gets worse, I will be able to get more support. Right now he is still semi functioning so he flies under everyone's radar.

    I think that he may have experienced delusional thinking for a couple of days but certainly not ongoing hallucinations...can't wait for these.

    Did you have an autopsy done on your dad?

  • I know that you know this but I would be willing to bet that he has not found the right cocktail of meds yet. The reason he plays video games is that competing for us men is probably the strongest feelings we get. I play Mario Kart. I would wager that he likes to play online and not the computer. The reward of winning against a computer is not near the high as winning against another individual. The thing about Mario Kart is that you get mentally and physically drained after about an hour but you keep reflexes and fine motor skills sharp. Keep working on the meds. Ask your husband if he wouldn't mind you taping him with your smart phone so you can visually show your Dr.s whats going on. Let him know how serious it is to you.

  • I have read your posts on this page and my heart breaks.

    PD and its relatives LBD and MSA are highly variable diseases, depending on which neurons get hit first.

    Sleep disorder is a well known symptom of PD. It usually involves being unable to sleep properly at night and inappropriate sleep during the day. I have found that 50-100mg of 5-HTP, taken a couple or few hours before bed, helps me to sleep well at night and therefore stay awake during the day.

    NAC (N-acetyl cysteine) has been shown to improve the underlying condition, that is, reverse the deterioration. Here is the study: journals.plos.org/plosone/a...

    Patients received NAC via IV weekly plus took two 600mg capsules per day. I take a similar daily dosage. It may have stabilized my condition and it did help an unrelated condition as well.

    Both the NAC and 5-HTP are readily available over the counter supplements. Worth a try at any rate. Everyone's PD is different and you just have to experiment to find what works.

  • Are you able to take the IV dose?

  • No, not set up to do that. Also, I backed off the oral dose from 1800 mg to 1200mg/day because it thinned out my saliva. 1200 mg /day is what they took in the trial.

    I have started inhaled nebulized glutathione which may be related - NAC is used to make it.

  • My father was not autopsied because there was no foul play or pre-determined scientific reason. He had PD and it was obvious that he had that malady and nothing else. He acted a lot like your husband with self-involvement, unsocial/antisocial behavior obsessive thinking and when he went on a dopamine agonist he became even more self involved, withdrawn and lost much weight so we had to take him off of them.

    Cancel my idea of taking tyrosine because you are on a SSR!. When I tried Paxil, like a stated, it made me feel emotionally numb - I felt nothing, lost my sex drive and got off of it several months later - it is not a drug you go off of casually. It made you feel not much with gain weight and that does not surprise me.

    webmd.com/depression/featur...

    progressivehealth.com/l-tyr...

    Doctors are a pretty predictable bunch and they can only prescribe by a playbook which is derived from a pharmaceutical company - they are pill pushers. Also, if someone is using the prescribed drugs for PD everything is great (no matter how bad off the person is) and unless a doctor gets PD they have little idea of how bad of a condition it is.

    I do not have idiopathic Parkinson's. I worked as a greens keeper and came into contact with many insecticides, herbicides, fungicides and Monsanto's Roundup - I now cringe thinking back on how many toxic substances I used. I had to spread the stuff and often found small balls of whatever in my socks and shoes. Meaning, the stuff was absorbed through my sweaty feet and within a year of quitting the job I started to feel sick. When I showed signs of parkinsonism I decided to use the internet and see what else was available for therapy. Hence using dietary supplements (minerals, herbs, amino acids, vitamins) for therapy. I watched my father for more than a decade and noted the poor standard of care so I felt I had nothing to loose in trying alternative therapy. I am fortunate that my body reacted extremely positively and I am fully functional, though I have to take the supplements till my dying day. The condition is controlled but still exists. Recently I miscalculated how much mucuna pruriens levodopa I had and basically had none for 3 days. I became rigid but not disabled - I could still work, my job is physical and requires lots of walking. And I felt pretty awful but I was still functional. Upon taking levodopa again my back relaxed and I slept much easier. I could see the symptoms returning. So I am a pretty lucky guy and upon reflection it all seems like a surrealist episode. I felt like I had something 'coming on' for a long time then the symptoms surfaced and I took supplements and went back to 'normal'. Pretty strange stuff.....

    I recommended Zandopa because it has been shown to improve parkinsonian symptoms and if your husband tries it just consistently replace the same dose every day to see if there is a difference.

    Though I have never used the following amino acid, homotaurine has been shown to improve daytime sleepiness in PD patients:

    "Our data suggest a beneficial effect of homotaurine on excessive sleepiness."

    ncbi.nlm.nih.gov/pubmed/258...

  • What has happened to doctors via Big Pharma is most unfortunate. Details: tinyurl.com/zvgcu79

  • Many years ago I worked events in which drug companies wined and dined doctors to use their new (and expensive) drugs. 2 come to mind: One was for a testosterone scrotom patch and their were 3 graphs with varying height bell curves indicating effectiveness. The product being pushed had a huge (rather phallic) bell curve (much higher than the competitors) and the other server and I could not make eye contact because we would immediately laugh. The other - less humorous/more ghastly event, involved a new burn care drug. Doctors ate bloody mid rare steaks while looking at burn care patients whose 'temperature' was from mid rare to medium well. Some of the staff were appropriately grossed out. After dinner the doctors and spouses were carted off to a broadway show. Yup it is all about money...if a drug has questionable clinical results, cherry pick the info. And they must continuously prime the pump by giving perks to doctors.

    One of the HU participants has drug-induced parkinsonism from taking 1 dose of Cipro..... He immediately fainted and has neurological symptoms ever since. His doctor thinks his therapy is going great. His reality is not as happy and he is constantly looking for alternative therapies to improve his condition.

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