[stevem53]

Hi Everyone..It is raining here today, and it will be a good day to catch up on replying to e-mails, blogging some things on my mind, and getting back into some political joisting on a couple of political forums I post on..Im thinking about putting another photostory together today as well..I woke up with this song playing in my head by the Who.."The Punk and the Godfather"..Should be interesting..I have a feeling this means that some politician/s is going to get roasted, but good!

I have been very symptomatic lately..The meds arent rescuing me..I have trouble walking..I have trouble getting up from a sitting position..I went clamming a few days ago, and it put me down bad..I only stayed an hour, and that was too long, I couldnt wait to get home and lay down, and when I finally got home, I was completely trashed..There were things I had to/wanted to do, but could do nothing but lay there, as every part of my mind and body was in a hopeless state of weakness and fatigue..fall asleep, and hope to feel better when I wake up..I know what is going on is not progression, it is emotional on a conscious and sub-conscious level that has been gnawing at my peace of mind for a while..No sense in calling my neuro, and going on a medication magical mystery tour..Sometimes you just have to batten down the hatches untill the storm passes..I am completely convinced beyond a reasonable doubt that mental, and emotional health has a significant effect if not control over the physical Parkinsons condition..I was chatting with a guy last night who was a partcipant in a gene therapy clinial trial..Unbeknowst to him, he got the placebo surgery, and his symptoms impoved remakably, as did others in the study who also recieved the placebo..And then I asked him.."What happened to you symptomatically when you found out the truth?"..And he told me that his condition began to backslide to his original physical state, as he realized that his hopes were a fantasy because he was told at the conclusion of the study, about a year later that he had in fact received the placebo surgery, and not the gene therapy, and as a result he began to go through a process of grieving, and devistation..As a matter of fact, the placebo recipiants faired so well, that the study was considered a failure, and is to be redone without any placebo participants..Just as I suspected..Here is a man, who enjoyed the freedom of reduced symptoms, and a reduced medication regimen over that time, contingent on one very simple emotion.."Hope"..So, this begs the question?..How much of pd is physical, and how much of it is the victim of some underlying inner emotional turmoil, temporary or permenant, and/or mental illness/s?..I am going to pay close attention to my emotional condition as time passes, to see where I end up physically at the conclusion of my emotional roller coaster

So, having said all that, yesterday I went down to the boat, and took my pot hauler out of the cabin, and am going to mount it on the front of the cabin so I can catch clams with a bullrake instead of tongs..The hauler will be used to pick up the rake after I have pulled it across the seabed and hopefully have caught some clams in the process..Hopefully I will post some pictures of it next week..In spite of how Ive been feeling, I will not allow this condition to put me down..I am going to live my life, and persue my hopes and dreams, and Pakinsons is not going to stop me!!

How was your week?

[vlhperry]

My week has been so so. Like you, if I take the dog for a walk, I get home too washed out to do the thinks I would like to do.

Today my husband forgot to fill up my daily drug vial and I didn't get anything until after noon. I was a basket case, barely able to walk. My husband is on spring break and feels he has earned the right to be lazy. I feel selfish, but finally about two in the afternoon, I yelled at him while he sat playing games on the computer that I needed my meds. I take over 20 pills a day, most for what could happen when my autonomous system gets attacked by PD, ie, Metformin for diabeties even though I don't officially have it, Celexa for depression, Clonapin for mood, mirapex for restless legs, etc. and I can't keep all of them straight.

What I wouldn't give for a vacation from PD. I wish I could earn it.

I also do not have any intention of living my life according to my PD Restrictions. I will still play music, have fun with my grandchildren by my youngest son ( who never has known me without PD.) and love the lord.

Vicky

[RLSmi]

This seems to be the best desrciption of my experience with PD. For most days I am still blessed with good days, but for the last few they have not been the best.
Even on my not so good days I can still walk the dog. On those days she would probably not get a walk without her very persistent nagging: "whimper whine whiiiine ooowr whimperwhimper rowf!" That usually gets me moving to get the leash and a poop bag, i buckle her up and off we go. She actually takes me walking, dragging me along at about double my comfortable speed for the entire mile to mile and ahalf route. I often cheat and take her off the leash to let her chase squirrels. She loves it but rarely catches one. She is very athletic and loves to run, but always keeps me within sight and responds quickly to "come Aggie".

What bothers me most is how quickly I tire out when trying to do yard work. I gave the lawn its first mow a week ago and had to stop and rest many times. Fortunately, I did sleep extremely well that night and suffered little hangover fatigue the next day (a good day).

I still get around extremely well as long as I stay on schedule with the meds. We are going to south and central Texas tomorrow to visit relatives and look for fields of blubonnets. This is a rare Texas treat this time of year. Even with compromised olfactory function, when I get downwind of a large meadow of them, my childhood memories come flooding in with the fragrance.

Take care 'til next week and be good to yourselves.

Robert

[reverett123]

I use up enough bandwidth as it is. But I am coming out of a trough now, having been through a month of hell. Like Steve, I have been noticing some things about emotions and how they affect my ability to function.

As I have mentioned before, I was a real estate developer for the last eight years and have been fighting to salvage something from the wreckage. That comes down to eleven old mobile homes that were in such bad shape that the bank didn't want them as collateral back when the loan was made. So the plan is to fix them up and sell them cheap and on credit to have a small income for three or four years. Unfortunately, most of the "fix up" part falls on my already stressed out, anxiety racked wife. Things have been very tense in our home for the last month, to put it mildly.

As a result, I had the conditions to observe a de facto experiment on the way stress hits my symptoms. All my life I have been the proverbial "cool cucumber" sort. The only thing that could get to me were things that affected her. Everything else rolled away like water off a duck.

So, I found myself trapped by PD and unable to escape as she became more and more distraught, racked by fear, frustration, rage, and a dozen other emotions. I was literally in "melt down". I found myself more than once curled up on the floor too weak to move.

As the work has progressed, her load has lightened and the atmosphere improved. But I had doubled my meds and was still barely functional. And the slightest mention of the project by her was like someone let the air out of my balloon. Even worse, I noticed that it was not just the topic, but I was reacting to her! Then I remembered something Harley had said when her marriage was falling apart. About how the doctors had noticed that her symptoms got worse when her soon-to-be-ex was in the room.

I had developed an aversion to my wife as a result of the combination of her intense emotion combined with my own trapped helplessness! Just as Harley had developed one for her ex! Once I realized what was going on, I used self-hypnosis and the fact that the worst was over to regain control of the reaction. I have improved greatly over the last week and am nearly back to normal, for me.

The experience has left me a lot to think about. At the worst stage she was filled with rage at the world and I and three dogs would do our best to blend into the furniture. The situation brought up strong echoes from my childhood and my raging alcoholic father. Even though in both cases the rage was not directed at me, still the feelings were the same. Trapped. Helpless. Awash in stress chemicals.

Much to think about, indeed.

[stevem53]

Originally Posted by reverett123

I use up enough bandwidth as it is. But I am coming out of a trough now, having been through a month of hell. Like Steve, I have been noticing some things about emotions and how they affect my ability to function.

As I have mentioned before, I was a real estate developer for the last eight years and have been fighting to salvage something from the wreckage. That comes down to eleven old mobile homes that were in such bad shape that the bank didn't want them as collateral back when the loan was made. So the plan is to fix them up and sell them cheap and on credit to have a small income for three or four years. Unfortunately, most of the "fix up" part falls on my already stressed out, anxiety racked wife. Things have been very tense in our home for the last month, to put it mildly.

As a result, I had the conditions to observe a de facto experiment on the way stress hits my symptoms. All my life I have been the proverbial "cool cucumber" sort. The only thing that could get to me were things that affected her. Everything else rolled away like water off a duck.

So, I found myself trapped by PD and unable to escape as she became more and more distraught, racked by fear, frustration, rage, and a dozen other emotions. I was literally in "melt down". I found myself more than once curled up on the floor too weak to move.

As the work has progressed, her load has lightened and the atmosphere improved. But I had doubled my meds and was still barely functional. And the slightest mention of the project by her was like someone let the air out of my balloon. Even worse, I noticed that it was not just the topic, but I was reacting to her! Then I remembered something Harley had said when her marriage was falling apart. About how the doctors had noticed that her symptoms got worse when her soon-to-be-ex was in the room.

I had developed an aversion to my wife as a result of the combination of her intense emotion combined with my own trapped helplessness! Just as Harley had developed one for her ex! Once I realized what was going on, I used self-hypnosis and the fact that the worst was over to regain control of the reaction. I have improved greatly over the last week and am nearly back to normal, for me.

The experience has left me a lot to think about. At the worst stage she was filled with rage at the world and I and three dogs would do our best to blend into the furniture. The situation brought up strong echoes from my childhood and my raging alcoholic father. Even though in both cases the rage was not directed at me, still the feelings were the same. Trapped. Helpless. Awash in stress chemicals.

Much to think about, indeed.

Bingo!!..Like I had mentioned Rick..I have things on the conscious, and sub-conscious level eating away at me, and this is why I have been having so much difficulty managing symptoms right now..I know for sure that I did not progress this much in a matter of a few weeks, and I know calling my neuro about it is a waste of time, because the answer to my problems/feelings right now is getting to the end of the process of letting go..Ive seen what emotional crap does to pd..You mentioned Harley as an example..I saw first hand what emotional tumoil does to her..It litterally puts her on the floor, incapacitated..I know what it does to me..My symptoms get unmanageable, and medication doesnt rescue me from it..and the more I dwell on the object/s of my malcontent, the worse my symptoms get, and whats worse, is when Im in the middle of a crisis, I take more Sinemet, and naturally it is futile, because it doesnt take away the emotional upheavals contributing to my condition, so the answer is, letting go of the things I cannot change, and refusing to take a/another bite out of the fruit from the poison tree..Not always easy..It is like an internal, and external tug of war, and somewhere along the line, I have to take the initiative, to make a conscious effort to let go of the rope, and allow God, if I have faith in Him, and time and patience to heal all wounds

I blew the transmission in my truck two weeks ago today..I brought it to the shop, to a mechanic I have never done business with, because he is close by, within walking distance..The truck was supposed to be done last Tuesday..So last Friday I paid him a visit and asked him what the story was?..He told me his tale of woes, and promised it would be ready on Tuesday..yesterday..Well, it sat out in his lot all day, and he never called me..So in a little while I have to go back there and confront him again, cuz I am riding around in a van that I bought a while back, that I no longer need, and my daughter wants it, and is flying down here from North Carolina of Friday, and is going to drive the van back home on Sunday..So if my truck is not fixed by Friday, then that means no transportation untill next week, when this dude gets up off his *** and finishes the job, never mind the $1500 that he is going to charge me, so needless to say, I am not happy with him at the moment..Two weeks??..Come on!!..That is unacceptable..but if I dwell on it, I am the one who suffers

[reverett123]

steve wrote:
"Bingo!!..Like I had mentioned Rick..I have things on the conscious, and sub-conscious level eating away at me,

One of my questions is - how long has this been eating at us? Has it been driving us towards PD for decades? Or has PD created the problem from nothing? Did we have a sensitivity to the chemical cocktail we call stress all along but were able to mask it until the toll grew beyond a certain point? Is part of the reason that more of us big, strong men have PD than those emotional women due to the fact that our society says it isn't masculine to show feelings but it is OK if a girl cries? What is the attitude of the low incidence cultures like India toward display of emotion? Girija?
and this is why I have been having so much difficulty managing symptoms right now..I know for sure that I did not progress this much in a matter of a few weeks,
Likewise, I didn't suddenly heal as I was able to deal with my stress. The sensitivity is chronic and flares up with acute responses.
and I know calling my neuro about it is a waste of time, because the answer to my problems/feelings right now is getting to the end of the process of letting go..Ive seen what emotional crap does to pd..You mentioned Harley as an example..I saw first hand what emotional tumoil does to her..It litterally puts her on the floor, incapacitated..I know what it does to me..My symptoms get unmanageable, and medication doesnt rescue me from it..
Ditto. Total incapacitation in minutes. Take sinemet by the handful and nothing happens.
and the more I dwell on the object/s of my malcontent, the worse my symptoms get, and whats worse, is when Im in the middle of a crisis, I take more Sinemet, and naturally it is futile, because it doesnt take away the emotional upheavals contributing to my condition, so the answer is, letting go of the things I cannot change, and refusing to take a/another bite out of the fruit from the poison tree..Not always easy..It is like an internal, and external tug of war, and somewhere along the line, I have to take the initiative, to make a conscious effort to let go ..."
It does seem like an ongoing struggle both inward and out. What is the connection between my freezing in place and that kid trapped in a bad family scene? Between the hero child with the stiff upper lip and the adult zombie? Just need more L-dopa? Don't make me laugh.

[stevem53]

Originally Posted by reverett123

steve wrote:
"Bingo!!..Like I had mentioned Rick..I have things on the conscious, and sub-conscious level eating away at me,

One of my questions is - how long has this been eating at us? Has it been driving us towards PD for decades? Or has PD created the problem from nothing? Did we have a sensitivity to the chemical cocktail we call stress all along but were able to mask it until the toll grew beyond a certain point? Is part of the reason that more of us big, strong men have PD than those emotional women due to the fact that our society says it isn't masculine to show feelings but it is OK if a girl cries? What is the attitude of the low incidence cultures like India toward display of emotion? Girija?
and this is why I have been having so much difficulty managing symptoms right now..I know for sure that I did not progress this much in a matter of a few weeks,
Likewise, I didn't suddenly heal as I was able to deal with my stress. The sensitivity is chronic and flares up with acute responses.
and I know calling my neuro about it is a waste of time, because the answer to my problems/feelings right now is getting to the end of the process of letting go..Ive seen what emotional crap does to pd..You mentioned Harley as an example..I saw first hand what emotional tumoil does to her..It litterally puts her on the floor, incapacitated..I know what it does to me..My symptoms get unmanageable, and medication doesnt rescue me from it..
Ditto. Total incapacitation in minutes. Take sinemet by the handful and nothing happens.
and the more I dwell on the object/s of my malcontent, the worse my symptoms get, and whats worse, is when Im in the middle of a crisis, I take more Sinemet, and naturally it is futile, because it doesnt take away the emotional upheavals contributing to my condition, so the answer is, letting go of the things I cannot change, and refusing to take a/another bite out of the fruit from the poison tree..Not always easy..It is like an internal, and external tug of war, and somewhere along the line, I have to take the initiative, to make a conscious effort to let go ..."
It does seem like an ongoing struggle both inward and out. What is the connection between my freezing in place and that kid trapped in a bad family scene? Between the hero child with the stiff upper lip and the adult zombie? Just need more L-dopa? Don't make me laugh.

My basic observations..I had a stressful job for 31 years before I retired..Dragging for fish has you on the edge all the time..Although it is adventureous, and I love what I did for a living, owning a big boat is alot of responsibility, and can be a cronic headache..When I was out fishing, especially at night, and even worse, at night, and in the fog, the anxiety level is high..You have to pay attention to so many different venues, and conditions, and the stress doesnt end untill the day/night is over..I often wonder if that kind of pressure can kick off pd?

When I am living reasonably peacefully, the only problem I have with symptoms is over doing it..When Im stressed, or upset for whatever reason, my symptoms are unmanageable..Like you say, you can pop more Sinemet, but it doesnt do anything..So evidently, lowered levels of dopamine production during stressful times, probably isnt the problem..But what is?