Pleasure and PD

[dboobar]

I was diagnosed @ 38 yrs and now I am 51 yrs. I have always been considered a very positive and ambitious person. Over the last 5 years, my decline has been rapid. I take over 24 tabs of 25-100 Ldopa. I now get very little pleasure out of anything and its not because I don't have things available to do or people that love me (8 yr and 11 yr old boys and wife). I am really fighting the biology of PD. After at least 13 years of this unforgiving disease, how does one find pleasure when all the forces are in the opposite direction?

[ion_ion]

Even we try to ignore the PD sometimes it does not want to ignore us.

[johntPM]

dboobar, I was diagnosed 12 years ago at 49. You have good reason to be depressed because of Parkinson's: you've been dealt a poor hand. But, being depressed doesn't help. It's easier said than done, but you need to get pleasure in the things that you can do, rather than regretting the things that you can no longer do.

I spend a lot of time fighting PD: reading about it, writing apps to measure it and possibly to control it. I get pleasure from the fight.

I belong to a very good support group (Stafford branch, Parkinson's UK) which provide great friendship.

Finally, I walk and I walk and I walk. Exercising, especially with people, makes me feel better.

John

[dboobar in reply to johntPM]

Thanks John for the nice response. I am trying to get feedback from those of you that are experienced with PD as I am and see if you have experienced a complete lack of pleasure condition. This is not depression, even though most of us sometimes equate the two. I believe most of us have small bouts (sometimes even large cases) of depression.

I had multiple hobbies, sports activities, friends, foods that I really enjoyed and received pleasure from engaging with. I was very ambitious, hardworking, focused, etc. Now, in the last few years, I get very little enjoyment out of the same things. My kids hug me before they go to school, my wife is very responsive during the day (we work together), we have vacations coming up to participate. I have all kinds of fun coming up and continue to be part of.... but I can't seem to get much enjoyment out of any of this.

As you research a bunch on PD, I also have dug into the literature. The only thing other than real depression, that could cause this is the extreme lack of dopamine in my system.

Does anyone, including you John, have this extreme case of displeasure? Other than the more usual things like you (John) has mentioned, what things can I do to get that real feeling of pleasure and zest that some of you PD folks talk about?

I fight through the various symptoms daily. My on/off cycle is every two hours all day and night. I have complete non movement (totally frozen) conditions about 40% of the 24 hour period. I have been thru all of the medications, I exercise as much as possible when I can move, I was turned down twice for DBS (for poor memory issues) and now they are considering Duopa (I am not excited about it). Even though this condition sounds depressing, I am ok with it. I have a problem with "not experiencing pleasure" when I do something that any other person would absolutely get some sort of response to.

I would love any additional feedback.

[Erniediaz1018 in reply to dboobar]

You must try some of these herbs I have listed on my protocol posting. I've been freed from exactly the same things you're experiencing,

[Hikoi]

It has a name - anhedonia and it is strongly linked to parkinsons. Another of those hidden symptoms. PD 10 years now - When my first grandchild was born I was amazed at my lack of pleasure, it was ho hum, take it or leave it. Of course I don't tell my family this and I can be positive and enthuse when it is necessary and I am happy to be a grandparent, but there are no more peak moments.

Apathy is a big issue - my friend and I where talking about it just yesterday, and we shared a laugh when he said you can understand why people with pd don't often commit suicide despite high depression rates, apathy, they just don't get around to it.

Re being turned down for dbs. I wonder if you are on amantadine - the neuro nurse told me of a person who failed the cognitive trust for dbs, came off his amantadine before repeating it and passed.

[Hidden]

As well as dopamine issues, people with PD can often have problems with seratonin. Perhaps this is worth looking at in your situation.

[laglag]

I read your post earlier this morning & then saw this article & thought it might be worth reading....

doctor.ndtv.com/living-heal...

[Ann8Cr]

Have you considered joining a Rock Steady Boxing Group? RSB is designed specifically for PD patients. I have been attending RSB for a year now, starting shortly after I was diagnosed. The intense, non-contact boxing exercises we do are challenging and fun, and they create new neural pathways in the brain to work around some of the brain cells we have lost. Unexpected result: five years after losing my sense of smell, I have gotten it back!

One member of our group, diagnosed twenty years ago at age 32, says he finds it so much more heartening than a support group because we are actually doing something to fight back against our disease, and it really works!

One of the healing aspects of RSB is the laughter. Some of the exercises are just hilarious, and we are pretty hilarious when we attempt them! (Our class is extremely fond of one exercise called Bar Fight! Lol) Laughing with others who really “get” what we are going through really defeats that sense of isolation that can come with PD.

Praying for you in your journey, dboobar.

[Ann8Cr]

rocksteadyboxing.org/

will help you learn more about RSB and find a class.

Things can get better!

Ann

[alaynedellow]

Iam 55 and have had terrible apathy when didn't care if lived often thought that least if died now i could get it over with. But as Hikoi says couldn't be bothered with it. I havve been taking Mannitol sine dec 2017 and wow my brain is back - the apathy has left and i back to glass half full and that it not that bad and just have to plod on. Apathy is awful.

I have also has improvement in physical ailments too. I think apathy is very common for us sadly. I'm off topaint spare room this afternnon whereas few months ago i would have said why bother.

Good luck

[dboobar in reply to alaynedellow]

55 is too young for PD. Really no one should be having to deal with this odd disease. At any age the challenge sometimes is to keep our care givers educated as to what is happening with our physical and mental condition throughout the constantly evolving PD timeline.

For me it is hard to understand how the one most defining trait I have/had as a person was that nothing was too challenging for me; my dedication, hard work ethic and "make it happen" personality always was there. I did not have an apathetic cell in my body.

For the first 10 years of PD I continued doing all of the things that grew my career and future; the fatigue and stiffness was setting in but I basically ignored it and pushed onward. I thought that the disease was not a big deal; why were there folks complaining so much? Well, I now started a very rapid degrading process. I went water skiing (single ski like the good old days) last July; I was in Europe 3 times for business and all over the US up until November 2017. At present (8 months later), I can't get up and really walk at times for hours; my body functions are unpredictable and my mental cognition, including desire to "make it happen" are severely reduced.

We need to get the Phd folks to pull together solutions concerning a cure. They spend too much time reworking the same research areas. I think neuroplasticity is the way we should go. The brain is designed to find work arounds to get past problems. There is redundancy in the brain where, if taught, it can find a way to accomplish the task of movement using different parts of the brain. Check out the following article to get an idea of what I am talking about: psychologytoday.com/blog/th...

Here is even a better site that provides examples of movement related neuroplasticity: sciencedirect.com/topics/ne...

[jimcaster in reply to dboobar]

Excellent! I was just diagnosed last May so I can't offer any practical advice. However, after reading this comment from you with very helpful information for all of us, it occurs to me that interacting with others on this site is a genuine source of pleasure for me. At least in some small way, I hope it is for you as well. We are all in this together. God Bless you!

[tbirchf in reply to alaynedellow]

How much mannitol do you take? I bought some for my husband but he said it made him nauseated so won't continue. I am discouraged with his lack of will to do anything, but I know it's the disease and not his fault.

[alaynedellow in reply to tbirchf]

I take tablespoon a day - maybe start with smaller dose, ginger is very good for nauseau- make a hot tea with it

[tbirchf in reply to alaynedellow]

Ok thank you. I have him taking vitamin B1 right now, some have said it helps with fatigue.

[--Ton--]

I'm sorry you've started to experience the ugliest side of PD. I too am starting to see the downside and realized I was starting to push the people (who love me the most) away. Unfortunately we have a disease for which there is no cure. There's only temporary help like DBS and Boxing until PD completely takes life's pleasures away. I'm sorry this is happening to you. You are in my prayers.

[bassofspades]

youtu.be/Hs-vPqfsO0Q(Not working as expected?)

[bassofspades]

5htp based supplements like 5htp Supreme or Neuro Replete help with serotonin balance

[silvestrov]

I did some brain storming to find a supplement or a combination of supplements which may help with anhedonia. (To a much lesser extent) I have studied schizophrenia and know anhedonia is a symptom of that condition so I used it as a starting point and this is what I found.

Add-on Pregnenolone with L-Theanine to Antipsychotic Therapy Relieves Negative and Anxiety Symptoms of Schizophrenia: An 8-week, randomized, double-blind, placebo-controlled trial.

"Oral PREG (50 mg/day) with LT - theanine (400 mg/day) or placebo were added to a stable regimen of antipsychotic medication from March 2011 to October 2013."

"RESULTS: Negative symptoms such as blunted affect, alogia, and anhedonia (SANS) were found to be significantly improved, with moderate effect sizes among patients who received PREG-LT, in comparison with the placebo group."

ncbi.nlm.nih.gov/pubmed/262...

L-theanine provides neuroprotection against Parkinson's disease related pesticide neurotoxicants. greenmedinfo.com/article/l-...

Allopregnanolone elevations following pregnenolone administration are associated with enhanced activation of emotion regulation neurocircuits.

ncbi.nlm.nih.gov/pubmed/233...

Neurosteroid allopregnanolone attenuates motor disability and prevents the changes of neurexin 1 and postsynaptic density protein 95 expression in the striatum of 6-OHDA-induced rats’ model of Parkinson’s disease

sciencedirect.com/science/a...

Comment: L-theanine is a non-protein forming amino acid of white, black, green and oolong teas and it is good for anxiety. The study uses 400 mg/day and 1,200 mg/day is the recommended maximum dose. I use theanine every day.

Pregnanolone is a hormone precursor (the precursor to DHEA - dehydroepiandrosterone)

mrm-usa.com/shop/brain-cogn...

and a component of DHEA, HE3286 (the main metabolite of DHEA), has been tested positively for PD:

HE3286 as Treatment for Parkinson's Disease

"Dehydroepiandrosterone (DHEA), a common neutraceutical and potent neuro-steroid has been suggested as a neuroprotective treatment for Parkinson’s disease (PD). However, DHEA is very poorly absorbed when given orally, is rapidly disposed of by the body and metabolized into sex steroids. HE3286 is a synthetic steroid based on an active metabolite of DHEA that may possess potent neuroprotective effects. HE3286 is orally active, metabolically stabilized and has demonstrated safety and activity in clinical trials."

michaeljfox.org/foundation/...

PS. If you download the 'Full Text PDF' ' Double-Blind, Placebo-Controlled, Multicenter Trial of Selegiline Augmentation of Antipsychotic Medication to Treat Negative Symptoms in Outpatients With Schizophrenia' .... selegiline lowered anhedonia symptoms:

researchgate.net/publicatio...

[Erniediaz1018 in reply to silvestrov]

Where are you?