Hi, all. Does anybody else here suffer from lack of enthusiasm? Chronic boredom? Lack of motivation? I just cant seem to get excited about anything these days. Dont care to play my music much anymore, something I used to go wild about. Now I barley pick up a guitar or sit down to play the drums and get tired of it in one minute. I used to love throwing a record on the stereo, now I just dont feel like I care to bother. Wondering if this is due to the low levels of the reward neurotransmitter, Dopamine, that we suffer from. Or am I just getting old?
Any thoughts? Similar situations?
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bassofspades
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My husband is the same way. I was told it was apathy. I just have the hardest time accepting that this once marathoner, go from morning to night handy man, artist, woodworker, history and current events buff just sits in the chair with no facial expression, barely reading the newspaper most of the day every day...except of course when he naps and sleeps, which is a favorite pass time now because he says he is chronically tired. He takes 100 mg sertraline for anxiety but it doesn't help him much. I do want to be a downer, but I am responding honestly to your question. I am always looking for help.
Hi ! I'm single & live on my own. I'm sick & claiming esa&dla. I have arthritis in my knee & osteoporosis,epilepsy & Crohn's disease schizophrenia @depression. I live every day the same, I watch tv all day. I'm taking medication & it makes me sleepy. So you're not alone. I'm taking a lot of medication & venlafaxine for depression.
Hi Boyce. You are so brave to be so honest, but I know exactly how you feel. My once active, loving and exciting husband has now also turned into somebody who just sits in front of the TV or computer. He never seems to be happy, and I'm nearly at the end of my tether trying to find ways of cheering him up. It's as if PD has stolen his will to help himself. But we will keep on trying. Any advice will be appreciated.
I think you will have to start making the plans and taking decisions. Say to him, we are going out for a coffee, a walk, theatre, cinema. PD people will often stagnate so take the initiative. Take a flask and a snack and go to the park.
You organise a weekend away if you can afford it, or a week. It's up to you now, it is role reversal. As you are finding, PD is not a trivial thing, it robs many of their personality, drive and energy. His get up and go, has got up and gone! Things will not be the same so no use waiting for him to do things, give him orders and he will respond.
Definitely get going. I was diagnosed 2 years ago. My husband and I go to the gym 6 days a week. I ride bicycle 5 miles, and 3 times a week use different machines and weights. Get up, get out and go. The best thing for you is to stay active. I know the tiredness., and the slumps we go through are very upsetting. I keep telling myself, I am in control, I take Rytary every 8 hours. Good luck to all.
It took me 200mg of sertraline and on top of that alprazolam 0.25 mg 3 x day and I still need 35 mg a day of cannabis infused coconut oil to enjoy my day.
I can relate to what you write. I think doing things that bring pleasure are partly related to feelings of optimism and not just living in the moment. For example, going for a walk, listening to music requires you to feel relaxed, or at least wanting to relax and while away some time, knowing that there is always a good tomorrow for other things. With PD, I have a feeling that something is not right and so it is hard to do things that once gave me pleasure and while away time - my mind is telling me there is a crisis. Each day is a realisation this is serious and confronting and any moments I can put it out of my head are wonderful.
I too feel that my world is shrinking in terms of the things I do. It is easy to give up work, give up going out, give up hobbies, give up travel............ It is living but only just! PD sucks for many people for sure, so I force myself to do things while I am able.
I continue working as a professor and i am lucky to have flexible work conditions. Since getting PD I search for greater meaning in my work to avoid boredom. If I gave up work I would be more bored. I guess my life will be shorter now I have PD and who knows if it will get to a point of me wanting it to end. So I focus on what is important to me - hobbies are just that - not so important to me in the end. Having a purpose has become more important now because of PD as I feel time is in short supply. But having a purpose is what people without pd struggle with too. We are not alone that way.
I could write a lot on PD and how it feels but you all know that anyway. By the time we are diagnosed life has probably changed anyway. Sometimes I feel like giving up and then sometimes I feel like I want make the most of life and push the boundaries out. Everyone has their story. Like everyone, we need to have a purpose, things to do, feel valued, interact and socialise and not be lonely - the danger is we do the opposite.
The problem with counseling Parkies is that you have to throw away the rule book. Breathing techniques don't help as your world gets smaller. Your brain does what it can to manage the disease, pushing it further can shut you down.
imshakydad So poignant, and beautifully written. My Parkie Ron was always this wild and crazy guy, but now he stares into space a lot. Hes admitted he has never been a handy or talented person, except in Sports. Of course, THAT'S no longer much of an option, except in the Rock Steady Boxing classes. And he tries to walk every day. But he was dx with Lewy Body about 3 months ago, so.......add that to the mix
thx for taking the time to read and comment. ron and i have some things in common it sounds like - u too - ur pain is different but is just as challenging! take care rk
Regarding Lewy Body Dementia: I need help. We have a second diagnosis of that from a neurologist who spent between 5 and 10 minutes with my husband. The PA did all the preliminary PD observations, "tests" and recorded her findings on her computer. Neuro then came in, reviewed and asked her a couple of questions about her findings. He then did his own re-"look" at just a couple of things I think it was the way my husband moved his arm or walked backwards, or something like that. Prior to all this another person had come in at some point to run thru the questions for orientation to time and place, and to have my husband count backewards, etc. My husband skipped a couple of words repeating a sentence they gave him and said it was Tuesday when it was actually Wed. Knew the month, date, and year and all others. Neuro later asked him what bothered him the most at this point in time..his movement or his memory. When my husband responded he was concerned about memory, mainly finding the right words, he told him his opinion was that he had LBD and prescribed Donepezil. He sent us to a memory doctor down the hall who crassly asked "Has your husband gotten lost in the house yet?" He smirked at the way my husband drew something and just overall, i felt like a head of cattle having my turn at being branded. Spinning from the shock of what the neuro had just told us, I almost bolted from the room. I requested a diferent neuro and today, several months later, are still waiting. This past week, I took my husband off of the donepezil; If my mistake, then I will have to bear consequences. All along I can say it might have helped for about a month. His speech is more slow and the ability to find words even slower. 2 weeks ago confusion set in and after being told to see the memory doctor again I spoke with 2 pharmacists and took him off the med. His thinking is not good, although some days are better than others. After a stomach illness last week, there is a worsening of tbe confusion. I am so scared. Is someone about to tell us he has AD? Or is this PD with dementia or was the neuro right...or worse, does he have all 3? Between trying to sort out hallucinations, word finding, confusion, anxiety, depression, I feel like I am having a nervous breakdown
Boyce3600 , did they ask him to draw a clock? That was the defining moment for Rons Neuro, he was not a PD specialist, but he consulted w/one (whom we subsequently went to see) and they prescribed the Exelon patch. I hesitated to put him on it because he has a severely disabled son still at home (we are waiting to get him in a group home) and i was afraid of the possible side effects. I was wrong, and about 3 weeks ago, he was so bad, so confused, so angry with everything, I couldn't talk to him. He's also been seeing very vivid hallucinations and whispers as if the people in the room. Or even sitting next to him. Yesterday, he said that one of them slept right next to him. We've lately been able to kind of joke about it sometimes.(Note: I don't live with him, but I stay with him until he's ready for bed, about 10:30, and see them again in the morning)
So we decided to start the Exelon patch that morning. At that point, he had nothing to lose. It has been a big help most of the time, and I've cut back on his C/Levodopa med, breaking them in half. I also added a little Mucuna Pruriens about 3x a day.
He is a little more reasonable to talk with concerning the hallucinations, he sees hordes of people-intellectually he knows they're not real, but in the same sentence, he reverses his thoughts. It's really frustrating that treating this nasty disease really depends on the patients being their own advocates. We have to pray constantly that we're making the right call. I depend on the wonderful Parkies on this website for info and insight! What was the donepezil supposed to do for your hubby?
great piece! I also DO care very much, its just hard to get excited about anything. Even things I love and have always loved. Im not ready to give them up in my heart, but forcing myself to, say, play my bass guitar isnt cutting the mustard at this point.
Well put. I find that joining groups that meet at specific times helps. People expect me to be there for Pedaling for Parkinson's, Dance for PD, Meditation, Thursday Hiking, Yoga. Choose your soup. There is something about having others count on me that impels me to push out of apathy. I think that apathy and anxiety are two of the main curses of PD.
And then there's the story of the old Indian with his son watching the wolves. Father are all wolves bad? Or some of them good? Oh my son it depends on what you feed them. Today my day will be full with exercise which stimulates endorphins. I can't wait to edit my new book entitled "Gold trading with my Hebrew awful." I plan to have it ready by Hanukkah. I did not get to enthusiasm easily. You have to feed the right wolf
The last time my wife went on vacation, our dog had a clingon and dragged her but around. When I went to relay the info to her my spell check changed clingon to Clinton. You can imagine the rest.
I was dx 10/16. I have noticed that I can plan to do something fun tomorrow, but when tomorrow comes the whole day will go by and nothing is done. Makes me very sad. I've lost my emotions, as well. Some very close friends have died and I can't even cry for them. I used to be very emotional, but not any more. I take Citalopram for depression. The only thing that's helps is RSB. That is a planned event and once I get there I have fun until it's over. Ugh!
You're not alone in this . . . I'm a bassist and have played as many as three bands at one time. I stayed very busy, and had tons of get up and go. I only play in one band now - our church's Worship Team, and I don't play every weekend. Other than learning and playing five songs for a Sunday service, I don't pick up a bass. Like you, I am very bored. I also play guitar, but haven't played one in months. I also used to practice every day, and would learn as many bass riffs as I could. Is it the lack of enough dopamine, or as you say . . . "am I getting old?"
I've recently started lifting weights and walking. I seem to have more energy, and little milder PD-related issues.
Apathy....I think that is defined as Lack Of Feeling. But we FEEL! We care! We just cant light that f@cking FIRE! I worked on getting my energy and stamina back, with some decent success. I will work on this too, and report back when I figure it out...without any drugs that have a possible side effect that includes dyskinesia!
I want to add that THIS group, this support group up here, is really great. We put our heads together and come up with solutions. I belong to another support group online and its a misery fest. Thank you all so much!
Bass...If you are really bored, my ebook is free on Amazon today and tomorrow... It's about a surgeon retired due PD who is seeking solace from relative boredom as well as a new career in writing. Midnight in Florence is the title and author is C. Randle Voyles MD.... (Skip 2nd chapter as it is historical background that is a rehash of the main players.) You may need to download a free Kindle reader
Yep, Its called Depression. Its deadly, it gets worse , a downward spiral, your health and family suffer and it slowly takes you. You need immediate intervention, go to your doctor, hospital, Nerou, anybody with medical training and tell them you need help. Call an ambulance if necessary. Good luck.
Rediscover music. I had forgot about Big Audio Dynamite, Synergy, a LOT of others. It is like unlocking hidden treasures of memories. Watch classic movies and figure why they are classics. Make a reason to get up in the morning.
Although the primary cause of PD is the degeneration of the dopamine secretory cells in the mesencephalon substantia nigra pars compacta, the other major causative factors include the degeneration and disappearance of neurons in the noradrenaline system (locus coeruleus), the serotonin system (dorsal raphe nucleus), and the acetylcholine system (basal ganglion of Meynert). As a result, PD patients show various disorders in the motor and nonmotor systems.
Hope Im not spamming, but I think this is worth sharing too. Touches on the Anxiety root. From the same article as above,
Similar to depression and apathy, PD is typically accompanied by anxiety disorders, which are observed in approximately 40% of PD patients [3], although this rate differs among various reports. Anxiety disorders are caused by decreased serotonin following dorsal raphe nucleus denaturation due to PD progression, or by overactivity of the noradrenaline system caused by the disinhibition of the dopamine nerve to the locus coeruleus.
I feel the same way. Diagnosed for about 4 years now, my motivation seems to shrink daily. So, I do find it helpful to "make" myself do things - play my violin (which is difficult due to stiff left hand), sew, garden, just getting up and going out - it helps. It's sort of like the exercise I do - I feel better after I do it!
That's how I'm feeling and don't know how to get my spark back. Also I have terrible dreams at night and wake up in a panic thinking this can't be my life. I feel your pain
The dreams, they happened to me the same unbearable way, and stopped overnight when I took Pramipexole 0.26 mg. The odd part is, it did not came back when I stopped Pramipexole (on the advice of a neurologist).
Yes, I feel exactly like that,. I used to be an avid reader, I loved it and it was an important part of my job, but for at least 12 years I haven't had the desire to pick up a book let alone read it. All of those symptoms that you write, I share. I wish there was something to over-ride it. I never phone friends or family either, I think I've developed a 'phone phobia!'
Took a 300mg dose of st johns wort yesterday and felt a lot better. Thats not an unreasonable dose either. However, check for interactions if you take other meds!!
Bassofspades, I too have lost all musical desires to enjoy what was a lifelong love of playing, composing and performing.
I am lost. The only thing remaining that gives me joy and purpose is my relationship with my kids, grandkids and my sister.
I also enjoy my son's dog. I think many of us could benefit from a companion pet.
Im on it like flies on you know what! Since my post, I have tried 300mg St Johns Wort once per day, and that has helped with this quite a bit. Be careful that it doesnt interact with your current meds. Interactions can be very dangerous.
Yep. I used to play a lot of music and gig frequently. Now my L hand tremor and stiffness in my R hand mean I simply can't play like I used to... I used to play fast virtuoso pieces: Vivaldi, Bluegrass etc. As I can't play at that ability anymore I don't much want to go out and play at all now. I do have other creative outlets (writing mostly) so I pursue those.
Strangely whilst I should be deeply depressed about the loss of my music I just feel bland and apathetic...
I kind of hope that when I start on LDopa etc I may get some ability back (at the moment I'm just on Rasagiline) so I'm not selling my instruments just yet!
I can relate to how you feel. I have lost some of the dexterity that I used to have, so playing instruments, that I used to do, is now more of a chore, rather than a pleasure.
Im getting closerto the answer now. Not so much dopaminergic as it is SEROTONINERGIC. dopamine, seratononin, norepinephrine and epinephrine all have to be balanced, and they all have the same amino acid precursors. Thats the part im studying now, how to balance them all
Unfortunately, apathy is a symptom that some of us ‘Parkies’ get! It is mentioned as a symptom of Parkinson’s, in some of the medical journals, I have read. I used to play drums and do vocals, and now, I have lost the enthusiasm, I once had. It would be nice if there was some quick-acting medicine, that could magically erase the apathy that, actually, is interfering with enjoying life, as I once did. Alas, I have not found a solution to the apathy, that affects me, so much of the time. Physical exercise is helpful, but now, there are times when I seem to have no enthusiasm for that. So, I understand what you are saying, bassofspades, I just haven’t figured out a way to fix the apathy, and lack of enthusiasm.
I started to get some of that motivation back when i tried selegiline. I found myself actually cleaning up my aquarium, which I procrastinated for years. however, the side effects such as week long migraines, and the dietary restrictions were not worth it.
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Motivation - how do you get it?
