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Parkinson's Disease Tulip

Life as a caveman, I'm gonna go sit on the bench.

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Unread 03-07-2013, 06:18 PM   #1
Jim091866
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Default Life as a caveman, I'm gonna go sit on the bench.

I have resigned myself to "life as a caveman." I sleep until I wake up. Sometimes that is 6 am sometimes as late as 8. When I am hungry I go to the kitchen, hunt something down and I eat. I rarely have any appointments. I am currently on social security disability and a pension from the fire department where I worked. So my income is fixed too! Last February my mom came to live with me when she could no longer stay as a live in caregiver for a woman with alzhiemer's, she herself had found out that she had a brain tumor and had to have surgery. So she came to live with me. She has recovered fully and is back working again. She does not take care of me-I can still walk and get around. But the arrangement has worked out well in the times where I have been frozen or not yet on and needed a little help. Almost 2 yrs ago my wife left me, said she had to "find herself", whatever that means. While I would welcome companionship it's not something that I put much hope in. I don't drive anymore, I am limited in the amount of on time that I get from sinemet to about 2 hours.

I did have big hopes in the "pump". But that too has faded. The cost for it is prohibitive and I think it's hung up in this healthcare debacle along with the fiscal issues. I even talked to a representative at Abbott about this a week ago and her response to my question as to when they were going to ask for marketing approval was that the FDA is reviewing the data and will let them know. I didn't think that the FDA reviews the stuff UNTIL the company submits the request. I don't forsee much happening in my lifetime. We have a disease with so many variables albeit person to person, time of day or response to medication. I have got a regimen that allows me to get through the day. I usually nap at least twice a day.

I'd like to send out a shout to Reverette, Ron Hutton and Dawson (sorry if I don't have the names spelled correctly) You have all contributed a great deal to this forum, thank you. But honestly looking back I can find little if anything that sticks. All of it is just sharing information, talk. If you want to take mucuna for example, how much do you take? How much are you even getting? It's all too tempermental and inconsistent. I plan on staying on the forum but I am too tired and disappointed, frustrated to have much zeal anymore.

Well, I'm hungry so I guess I'm going to the kitchen.
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Unread 03-07-2013, 07:23 PM   #2
Brain patch
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Default Sorry you are feeling so bad

Hi,
I am so sorry you are feeling so bad. I just wanted to tell you that you are in my thoughts and prayers. Bob Dawson is a good person to talk to. He seems to know about all the medication and is a very upbeat guy. My dad is also suffering with Parkinson's so I do have a bit of an idea of what you are going through. I know what you mean about feeling like a caveman. I have chronic pain and a traumatic brain injury so I don't get out very much either. It is hard.
Much love to you,
Brain
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Unread 03-08-2013, 05:29 PM   #3
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Originally Posted by Jim091866 View Post
....
I'd like to send out a shout to Reverette, Ron Hutton and Dawson (sorry if I don't have the names spelled correctly) You have all contributed a great deal to this forum, thank you. But honestly looking back I can find little if anything that sticks. .
...

Well, Caveman Jim, a thing you wrote last year stuck with me. Not many have written about their situation as honestly and clearly as you have, in this post (so come out of your cave some more and continue to tell it like it is, as you do so well): (I remembered this from last year; that;s how powerful your writing is - i remember it a year later

http://neurotalk.psychcentral.com/post858607-1.html
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Unread 03-09-2013, 04:53 PM   #4
Jim091866
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Bob, I did not mean any disrespect to you, Ron or Reverette. I guess I was trying to say that we all talk of trying this or that or the latest study and it just gets frustrating. Much like a verse in Amazing Grace we aren't any closer than when we first begun!




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Originally Posted by Bob Dawson View Post
...

Well, Caveman Jim, a thing you wrote last year stuck with me. Not many have written about their situation as honestly and clearly as you have, in this post (so come out of your cave some more and continue to tell it like it is, as you do so well): (I remembered this from last year; that;s how powerful your writing is - i remember it a year later

http://neurotalk.psychcentral.com/post858607-1.html
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Thelma (03-10-2013)
Unread 03-09-2013, 05:46 PM   #5
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Bob, I did not mean any disrespect to you, Ron or Reverette. I guess I was trying to say that we all talk of trying this or that or the latest study and it just gets frustrating. Much like a verse in Amazing Grace we aren't any closer than when we first begun!
There, you just did it again: excellent writing; I would not have thought to say this: "Much like a verse in Amazing Grace we aren't any closer than when we first begun!" Using old words in new circumstances.

We are all sharing the same frustrations. The whole Parkinson's system is chasing its tail. But don't go and get too discouraged, Caveman Jim.

And you a fireman? I don't think you are atypical Parkinson's and probably there is no such thing as typical Parkinson's, but you must have been an atypical fireman! The other firemen must have thought you were a philosopher or something; a writer.
I cried when you said how much you loved your wife. It jumped off the page and hit me squarely in the heart. I was not expecting that at all. I think Parkies have immense inner lives and sometimes it just comes pouring out, to the astonishment of all.
As the blessing says, "May you lead an interesting life."
And we say "Enough with the interesting part already; grant us a healthy happy part."
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Unread 03-10-2013, 01:57 PM   #6
Brain patch
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Hang tough my friends! I know this life is hard but try to find something positive and hold on. I love that Bob Dawson cranks up the Rolling Stones when things get too painful. I turn to music as well to get my mind out of hell. Crank up your stereo with some music you love and I promise it will help. I found a new group on u-tube that I love, it is called HIM digital versatile doom live at the Orpheum theatre. Check it out. I live in pain everyday now since 2006 but I find the day goes much better if I am moving in stereo.
Also, just so you know about the whole death part. I had a near death experience- they call it near death but I was actually totally dead for awhile and I promise you that we have a wonderful place to go to after this life. I personally have been there. I tell you that life does not end and what is waiting for us is so awesome I am looking forward to returning. The worst part is suffering in this life. But it is actually teaching us, changing us, refining us. Where we are going after this life is grand and pain free. I am telling you this so that you can see that there is hope even when it seems like there is no hope.
I love all you Parkinson's people. My dad has been facing this terrible disease like a champ. I am sorry for your temporary suffering. Trust me. It is temporary. Now get your music on.
Brain
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Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Unread 03-10-2013, 02:56 PM   #7
Thelma
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Originally Posted by Brain patch View Post
Hang tough my friends! I know this life is hard but try to find something positive and hold on. I love that Bob Dawson cranks up the Rolling Stones when things get too painful. I turn to music as well to get my mind out of hell. Crank up your stereo with some music you love and I promise it will help. I found a new group on u-tube that I love, it is called HIM digital versatile doom live at the Orpheum theatre. Check it out. I live in pain everyday now since 2006 but I find the day goes much better if I am moving in stereo.
Also, just so you know about the whole death part. I had a near death experience- they call it near death but I was actually totally dead for awhile and I promise you that we have a wonderful place to go to after this life. I personally have been there. I tell you that life does not end and what is waiting for us is so awesome I am looking forward to returning. The worst part is suffering in this life. But it is actually teaching us, changing us, refining us. Where we are going after this life is grand and pain free. I am telling you this so that you can see that there is hope even when it seems like there is no hope.
I love all you Parkinson's people. My dad has been facing this terrible disease like a champ. I am sorry for your temporary suffering. Trust me. It is temporary. Now get your music on.
Brain

i too have had an oout of body exoerience although I was not in any immediate danger nor even ill. It just hapened but the emotions you describe are the same and I am an atheist, but the one thilng I have come away with is this.

care about the ones you love and remember love yourself faults and all

I sign much of my work with

Take care jof you and yours and all else will fall in place.

ps keep writing there are many that like me don't have parinson's but still feel the same emotions even thoough the disease is different.
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Unread 03-11-2013, 10:45 AM   #8
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Thank you Thelma,
I was hoping to get a response like yours. Atheist huh? Even now? Maybe you did not travel far enough. You may not believe in god but that does not matter because god believes in you.
I am not trying to be some kind of preacher as I myself was not religious and still am not in the traditional sense of the word.
I just wanted to share that with all those that are facing overwhelming obstacles. There is always hope and you will find it is more than you were hoping for.
Sometimes treatments and "new" medications etc. are not the right place to put all your trust in.
I was told I would die without a liver transplant and that they had no idea how I was even alive. I checked myself out of the hospital with no liver transplant and am almost 100 percent healed from liver and kidney failure. How's that for you?
Nothing is impossible.
Much love to you all. I hope I did not offend anyone. This has been my honest, truthful experience.
Brain
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Brain patch.

Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
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Unread 03-16-2013, 02:40 AM   #9
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Default Time to leave the cave...

Jim, time to bust a move. see my thread on Duodopa. please no bubble bursting allowed unless it involves champagne!
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Unread 03-16-2013, 07:28 AM   #10
vlhperry
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Default Hi Brian

I also have experienced near Kidney failure because of being encouraged to take more Sinemet. I was put into a coma for 3 days, met my future daughter-in-Law during but had to be re-moved the drug induced coma after 2 days, severe dyskenisias set in immediatly set in despite my having a med vacation for two days, was put back in a coma for anouther day, and brought out the following day. How did you manage to get released the same day? My dyskenia was so bad the doctors said it looked more like a seizure. My Kidneys were almost shut down because of all the protein my muscles threw off.

Dianna Wood
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