[paula_w]

i've been posting about my medication changes, with having to drop azilect to take it and with the suggestion to try aricept. For reasons yet unclear, it didn''t work and I have never felt as badly as this week. Complete body weakness.

I called my neuro annd left a message to call me but then decided to write it all out in an email. It began with the greatest of clarity until I made a rather significant goof. I shared it with pkell for later use, but why? it might cause some of you to share it all and let neuros really, really know what is going on.

i typed it on my blackberry and it took all day. Going to copy them without names.


Hi Dr.,
I thought I'd try this to save time but realize you might not see it.

I recently had an appointment with L, and asked her if I could try
nortriptylline for extreme neuropathy discomfort in my lower legs.

I used to take it long ago and stopped because it interacted poorly with
something else.

So L found that it conflicts with azilect. I have felt that azilect helped me
cognitively, and upon mentioning that, L suggested trying aricept, then
adding nortriptylline.

This is not working. I waited a week without azilect before starting aricept and was only taking 1/2 tablet [azilect]as it just seemed like too much.

Began aricept on the 16th. Weakness in extremities has now become entire body weakness if -I go off, which is the reason I wanted the nortriptylline. If I take meds late, or eat too much and go off - there is no relief and I get shortness of breath, panic, I haven't eaten and lost the weight that I had to work hard to gain.

Internist has since taking azilect - not blaming azilect - just including -
that my last physical I needed an ultrasound and heart is "showing a little
backwash, we just have to keep an eye on it". I can have some pretty bad days and looked so bad to her one day, she wondered out loud if I needed a feeding tube; was relieved that I looked better the next time. Ok those are the facts -
here is summary and questions:

1. Could this mean that I am not going to be able to tolerate aricept? I do not want to continue it. Could it be a bad as a unusual reaction or not compatible with the boatload of sinemet I take daily?
Other meds are amantadine, synthroid, nexium, and xanax. Latter is .5 lowest dose - take one early evening and two at bedtime

2.Was azilect helping more than I thought? Even just the half tab? I do
n't want to increase it - felt jabs of chest pain - take your pic of what causes chest discomfort with all the meds, anxiety and panic, schizo hyper with sinemet every night and then there is acid reflux, but azilect added to it. Aricept makes me feel like I am dying and wishing I would. It is an entire body weakness, can't breathe, not sure what heart is doing, can't swallow and at least I'm hungry for breakfast before taking a lot of sinemet doses. Never hungry on aricept.

3. This plan began because of leg weakness and I have a painful nerve that runs from the top of my left (supposedly good) leg to the bottom and into the foot - quite painful - bending over feels like I could have stress fracture.
-
I can still get on with a ton of sinemet. I get end of dose dyskinesia and it'a a workout. I can still experiment with the one CR which I think helps me get through eating, but today no aricept or azilect and still no wild dyskinsia
although -what I do have is completely slurred speech, from sinemet. if I didn't have so much to explain, I would ramble on anyway and it's important to me that I convey what I think is one mistake that is having profound effects in young onsets like me, who have been on it for so long. The mistake included thinking pd symptoms were covered with agonists, ldopa, and DBS, but the reality is those meds are giving us "impulse dyscontrol and dopaminergic dysregulation".

I don't know if you read "monkeys in the middle" and understand you deal with so much more than parkinsons but its not just for old people ; the young ones are hiding, you can help at conferences (messed up here but meant thiis) -by asking why isn't a patient online expert on this panel?

4, (ha) lost track of numbers.you may find this interesting. I am so seldom
relaxed, always wound up, anxiety ridden and we don't want to go robotic. The only drug that does all 3 is marajuaba

and wth that spelling i accidentally hit send
Sent from my Verizon Wireless BlackBerry

continuing and trying to stay calm next email
Oops accidentally sent just as it was getting good (or bad) I am going to drop capitals and hurry to finish _ these motor flubs are common in my world but ending an email ending with marajuaba looks real bad...one can only laugh, I have no source and if I did I would be eatingSo at stage 4 with some stage 5, I am still coping with advocacy and need you to keep me functioning . I have to help conduct a learning institute in NYC next month and we are writing a book about what phenomenal growth has come out of the Parkinson forums, I an not going to edit as this email was typed on my blackberry. Shows that I finish what i start.length and any statements you may view as inappropriate are the result of dopamine dysregulation.So nerve pain and mind body relaxation. If you come into neurotalk.org it will be enligjtening. Come in the spirit of learning. Debi brooks, mjfs cofounder and closest assoc.did and is a regular poster and then you can probably participate here just doing what I do,could use more neuros. Thank yu
.www.neurotalk.org
www.pdonlineresearch.org
No time to correct whole body contorted
Paula
Sent from my Verizon Wireless BlackBerryhe called and is prescribing nortriptylline. and i hope understands a little more.nite,paula



\

[vlhperry]

Dearest Paula,

First, my neurologist (movement disorder specialist) took me off amantadine after four years. He said the protective benefits stop helping after this amount of time. Would also suggest you consult with a pharmacist for questions for drug interaction problems.

Secondly, would like to tell you an ironic joke you may have heard before.

A man, whose house was surrounded by floodwaters, was on the roof waiting for help. He spent his time on his knees praying to the lord to stop the floodwaters. Two men in a rowboat stopped by. "Sir, can we get you to dry ground?" The owner of the house stated, "I will trust in the lord to hear my plea for help!" About three or four hours passed, and a large speedboat approached the house surrounded by flood waters, with the water pouring through the second floor windows. The man continued praying on his knees for the Lord to stop the flood. The Police yelled through the fog horn, "Sir, please let us take you to safety! Once more the owner of the house , still on his knees, responded, "I will trust in my prayer, as the good Book says, to only ask and he will give." The police cruiser powered off to look for more victims to save. The wake their boat caused water to wash over the house roof and wet the owner's knees as he prayed.

A few short minutes later a helicopter, called by the police captain in the motor cruisor, flew overhead and dropped down a rope ladder and pleaded with the home owner to accept their help. The man screamed at them to go away and let him pray in peace. As the chopper slipped away, so did the man's house, and the chopper looked for the home owner in the flood waters.

When the man hit the water, he blacked out and woke up in front of St. Peter at the Pearly Gates. He reached St. Peter and said in frustration. "I prayed to the Lord who promises to answer those who pray for his help. How did I end up here? St. Peter replied, "He sent you a rowboat, a police power cruiser, and a Helicopter? What more did you want?"

Paula, if you take enough levodopa/carpadopa, you will reach the point where you cannot tell whether the drug is wearing off and causing dyskenesia or causing the dyskenesia. Your kidneys will be unable to handle your bodies uncontrolled movements because the protein will be broken down so fast that they will shut down.

Allow yourselve to feel the pain. It is the way your body tells you it is time to take care of it. You need to stop advocating, and take stock on how to prolong your life which is so valuable, advocation not being the primary reason. Many others are prepared to help given an opportunity. Many trained persons, as Jackie Christianson, with a degree in political science or communications. It is not a requirement that you must have Parkinson's disease to bring it to the publics attention.

*edit* You were advised to consider a DBS. If the drugs are having no effect, why won't you consider their advice? Don't ask the doctors to perform miracles God has not yet revealed to them. If DBS works count yourself blessed.

Love,
Vicky

[stevem53]

Originally Posted by paula_w

i've been posting about my medication changes, with having to drop azilect to take it and with the suggestion to try aricept. For reasons yet unclear, it didn''t work and I have never felt as badly as this week. Complete body weakness.

I called my neuro annd left a message to call me but then decided to write it all out in an email. It began with the greatest of clarity until I made a rather significant goof. I shared it with pkell for later use, but why? it might cause some of you to share it all and let neuros really, really know what is going on.

i typed it on my blackberry and it took all day. Going to copy them without names.


Hi Dr.,
I thought I'd try this to save time but realize you might not see it.

I recently had an appointment with L, and asked her if I could try
nortriptylline for extreme neuropathy discomfort in my lower legs.

I used to take it long ago and stopped because it interacted poorly with
something else.

So L found that it conflicts with azilect. I have felt that azilect helped me
cognitively, and upon mentioning that, L suggested trying aricept, then
adding nortriptylline.

This is not working. I waited a week without azilect before starting aricept and was only taking 1/2 tablet [azilect]as it just seemed like too much.

Began aricept on the 16th. Weakness in extremities has now become entire body weakness if -I go off, which is the reason I wanted the nortriptylline. If I take meds late, or eat too much and go off - there is no relief and I get shortness of breath, panic, I haven't eaten and lost the weight that I had to work hard to gain.

Internist has since taking azilect - not blaming azilect - just including -
that my last physical I needed an ultrasound and heart is "showing a little
backwash, we just have to keep an eye on it". I can have some pretty bad days and looked so bad to her one day, she wondered out loud if I needed a feeding tube; was relieved that I looked better the next time. Ok those are the facts -
here is summary and questions:

1. Could this mean that I am not going to be able to tolerate aricept? I do not want to continue it. Could it be a bad as a unusual reaction or not compatible with the boatload of sinemet I take daily?
Other meds are amantadine, synthroid, nexium, and xanax. Latter is .5 lowest dose - take one early evening and two at bedtime

2.Was azilect helping more than I thought? Even just the half tab? I do
n't want to increase it - felt jabs of chest pain - take your pic of what causes chest discomfort with all the meds, anxiety and panic, schizo hyper with sinemet every night and then there is acid reflux, but azilect added to it. Aricept makes me feel like I am dying and wishing I would. It is an entire body weakness, can't breathe, not sure what heart is doing, can't swallow and at least I'm hungry for breakfast before taking a lot of sinemet doses. Never hungry on aricept.

3. This plan began because of leg weakness and I have a painful nerve that runs from the top of my left (supposedly good) leg to the bottom and into the foot - quite painful - bending over feels like I could have stress fracture.
-
I can still get on with a ton of sinemet. I get end of dose dyskinesia and it'a a workout. I can still experiment with the one CR which I think helps me get through eating, but today no aricept or azilect and still no wild dyskinsia
although -what I do have is completely slurred speech, from sinemet. if I didn't have so much to explain, I would ramble on anyway and it's important to me that I convey what I think is one mistake that is having profound effects in young onsets like me, who have been on it for so long. The mistake included thinking pd symptoms were covered with agonists, ldopa, and DBS, but the reality is those meds are giving us "impulse dyscontrol and dopaminergic dysregulation".

I don't know if you read "monkeys in the middle" and understand you deal with so much more than parkinsons but its not just for old people ; the young ones are hiding, you can help at conferences (messed up here but meant thiis) -by asking why isn't a patient online expert on this panel?

4, (ha) lost track of numbers.you may find this interesting. I am so seldom
relaxed, always wound up, anxiety ridden and we don't want to go robotic. The only drug that does all 3 is marajuaba

and wth that spelling i accidentally hit send
Sent from my Verizon Wireless BlackBerry

continuing and trying to stay calm next email
Oops accidentally sent just as it was getting good (or bad) I am going to drop capitals and hurry to finish _ these motor flubs are common in my world but ending an email ending with marajuaba looks real bad...one can only laugh, I have no source and if I did I would be eatingSo at stage 4 with some stage 5, I am still coping with advocacy and need you to keep me functioning . I have to help conduct a learning institute in NYC next month and we are writing a book about what phenomenal growth has come out of the Parkinson forums, I an not going to edit as this email was typed on my blackberry. Shows that I finish what i start.length and any statements you may view as inappropriate are the result of dopamine dysregulation.So nerve pain and mind body relaxation. If you come into neurotalk.org it will be enligjtening. Come in the spirit of learning. Debi brooks, mjfs cofounder and closest assoc.did and is a regular poster and then you can probably participate here just doing what I do,could use more neuros. Thank yu
.www.neurotalk.org
www.pdonlineresearch.org
No time to correct whole body contorted
Paula
Sent from my Verizon Wireless BlackBerryhe called and is prescribing nortriptylline. and i hope understands a little more.nite,paula



\

Sounds like you're going through hell Paula..Im sorry to hear that

I saw my neuro a month early because there is something going on with my right leg..Last appointment the neuro thought it was a tremor..Now it moves alot more, and after a conference, and an exam, he came to the conclusion that my pd has not changed since my last visit..He said however that Im begining to have side effects from the sinamet..Dystonia, and dyskeisia in my right leg..

I had been taking Amantadine twice daily, so he upped it to three times a day..I felt good for a week..Went out fishing one day, and have been going through the same old crap all over again..At least I was able to get rid of my nightime sinemet dose..The leg, is my bad one, and my achiles tendon tightens up, and every step is so uncomfortable..So I see my neuro in December again

Does Azeilct provide any relief for dystonia?

[libra]

I am so sorry to hear what you are going thru Paula. It must be very frightening. Vlhperry sounds like she has good advice.
My experience is no where near yours so can't offer any good advice. But my health is getting worse also as I get older. It is scarey to me. I am almost 61 and have had pd I believe for about 7 yrs, but was diagnosed about 5 yrs ago. Up until now my symptoms weren't bad at all, but I think I am heading in that direction. It is so easy to dismiss your pd when everything else in your life is relatively the same. But once it starts affecting your life, having to quit work, etc, things aren't so rosey.
I hope things get better and this is just a bad stretch.

[paula_w]

one pwprecommended because it straightened out his hand. i need sinemet to get on and thus to get rid of dystonia. in the sense that azilect could contribute to getting you on, it would thus be helping dystonia and maybe for you might do more.

thanks steve
paula



sorry to hear that

I saw my neuro a month early because there is something going on with my right leg..Last appointment the neuro thought it was a tremor..Now it moves alot more, and after a conference, and an exam, he came to the conclusion that my pd has not changed since my last visit..He said however that Im begining to have side effects from the sinamet..Dystonia, and dyskeisia in my right leg..

I had been taking Amantadine twice daily, so he upped it to three times a day..I felt good for a week..Went out fishing one day, and have been going through the same old crap all over again..At least I was able to get rid of my nightime sinemet dose..The leg, is my bad one, and my achiles tendon tightens up, and every step is so uncomfortable..So I see my neuro in December again

Does Azeilct provide any relief for dystonia?[/quote]

[paula_w]

Hi Vicky,

i appreciate your concern and do realize the gravity of advanced pd. I have been talking about this in other threads and i want to clear up a few misconceptions that i do not feel are at play.

i have voluntarily asked for this med change, but looking back, as doctors do, she wanted to replace the cognitive benefits i felt azilect was providing. i should have spoken up instead of taking the aricept, which surprised me and i became an obedient patient. I shouls have at least asked for nortriptyline first.

another lesson learned. but i am proceeding with nortriptyline, and if i don't get results, with dose changes if needed, i will probably go back on the azilect

ok misconception:

i need to quit advocacy. rarely travel but completely committed to showing this illness as it is, especially how much our meds are the problem. It's not to cast blame, it's to solve it for our children and grandchildren. I'm not the one that is asking for a miracle. I'm asking them to learn from us and for a differenmt attitude toward us. Again, i'm telling it like it is.

if a person is not online, how do they stay current? most don't know the fox site exists. so how to get them current? i'm not blaming, i'm contributing to changing this.

my neuro knows about the fox site - i showed him at an appt. he finds me "strange" and does recommend DBS, but he always listens. So when i decided to email him. no time limit, i made the best of it.

misconception: i feel pain. yes the sciatica and lots of aches and pains. but it's not pain that is causing me to do this..it is extreme weaknesses - neuropathy. can't even pick the phone up let alone talk to anyone. it's intolerable, you must seek relief.

i posted that thread to give Laura some possible courage or ideas. but mostly to just demonstrate an idea for all to possibly do to let their neuros know.

today there was a power outage for hours and it was so hot. my nortriptyline hadn't been called in so i called neuro to check on it at 4:50 pm, he closes at 5:30. they had gone home early, most likely due to power outage. i was so disappointed - another night of suffering. but when he got home guess what he eventually checked,there was last night [this is my speculation] and he called it in. when my husband went to get it tonight, the pharmacist, whom i had called more than once, said it was just called in.

It says - for nerve pain, may cause weight gain. sweet cravings and drowsiness......works like marajuaba.lol
thanks for concern,
paula

Originally Posted by vlhperry

Dearest Paula,

First, my neurologist (movement disorder specialist) took me off amantadine after four years. He said the protective benefits stop helping after this amount of time. Would also suggest you consult with a pharmacist for questions for drug interaction problems.

Secondly, would like to tell you an ironic joke you may have heard before.

A man, whose house was surrounded by floodwaters, was on the roof waiting for help. He spent his time on his knees praying to the lord to stop the floodwaters. Two men in a rowboat stopped by. "Sir, can we get you to dry ground?" The owner of the house stated, "I will trust in the lord to hear my plea for help!" About three or four hours passed, and a large speedboat approached the house surrounded by flood waters, with the water pouring through the second floor windows. The man continued praying on his knees for the Lord to stop the flood. The Police yelled through the fog horn, "Sir, please let us take you to safety! Once more the owner of the house , still on his knees, responded, "I will trust in my prayer, as the good Book says, to only ask and he will give." The police cruiser powered off to look for more victims to save. The wake their boat caused water to wash over the house roof and wet the owner's knees as he prayed.

A few short minutes later a helicopter, called by the police captain in the motor cruisor, flew overhead and dropped down a rope ladder and pleaded with the home owner to accept their help. The man screamed at them to go away and let him pray in peace. As the chopper slipped away, so did the man's house, and the chopper looked for the home owner in the flood waters.

When the man hit the water, he blacked out and woke up in front of St. Peter at the Pearly Gates. He reached St. Peter and said in frustration. "I prayed to the Lord who promises to answer those who pray for his help. How did I end up here? St. Peter replied, "He sent you a rowboat, a police power cruiser, and a Helicopter? What more did you want?"

Paula, if you take enough levodopa/carpadopa, you will reach the point where you cannot tell whether the drug is wearing off and causing dyskenesia or causing the dyskenesia. Your kidneys will be unable to handle your bodies uncontrolled movements because the protein will be broken down so fast that they will shut down.

Allow yourselve to feel the pain. It is the way your body tells you it is time to take care of it. You need to stop advocating, and take stock on how to prolong your life which is so valuable, advocation not being the primary reason. Many others are prepared to help given an opportunity. Many trained persons, as Jackie Christianson, with a degree in political science or communications. It is not a requirement that you must have Parkinson's disease to bring it to the publics attention.

*edit* You were advised to consider a DBS. If the drugs are having no effect, why won't you consider their advice? Don't ask the doctors to perform miracles God has not yet revealed to them. If DBS works count yourself blessed.

Love,
Vicky

[ZucchiniFlower]

Paula, I don't know if this will be helpful or not. Aricept increases acetylcholine in the brain. I take a drug that helps me with PD symptoms which does exactly the opposite.

Artane reduces acetylcholine, which is why I take as little as possible. It lowers the amount of acetylcholine in the brain.

The balance between l-dopa and acetylcholine is important. Too little l-dopa means usually too much acetylcholine, and that causes dystonia and rigidity for me.

I have much less pain with Artane, but it can affect short term memory. Pain is a worse symptom for me.

http://en.wikipedia.org/wiki/Trihexy...tablished_uses

I also take doxepin and baclofen. I cannot function without baclofen.

I hope you like your 'new' neuro.

[paula_w]

Thanks for supplying an explantion for what possibly could have been at play with aricept. I kept saying, "this is different, it's worse than I've ever felt."

paula

[jinglelady4]

Originally Posted by paula_w

Thanks for supplying an explantion for what possibly could have been at play with aricept. I kept saying, "this is different, it's worse than I've ever felt."

paula

Paula,

You are a candle - a shining light. Do not give up raising your voice. Do not quit telling it like it is. I wish I could be there to help you. You DO need to eat as much as you can! I would love to give you some of my extra pounds - lol. I have no experience or much knowledge of the drugs that you take but I think if I were you - I might try seeking a spa that does body cleanses/and/or get massages/and or try some herbs - maybe chinese herbs?
Then again - perhaps you have already done that. What I can do - is say that a lot of people care about you and all you do. and I am sending out prayers and hugs.

wish i could send a cure too

april

[paula_w]

Thank you April. and siince you were one of the lucky gdnf participants, i will be giving you a call for statements about your antibodies and equipment "shift", and any current updates for the book if that's ok.

i'll take the prayers, it truly would take a miracle to cure this illness i'm afraid. i dom't expect one, but am going to make the best of it anyway.

weren't we going to take a cross country trip?

lol, thanks friend,
paula

quote=jingle belle;570663]Paula,

You are a candle - a shining light. Do not give up raising your voice. Do not quit telling it like it is. I wish I could be there to help you. You DO need to eat as much as you can! I would love to give you some of my extra pounds - lol. I have no experience or much knowledge of the drugs that you take but I think if I were you - I might try seeking a spa that does body cleanses/and/or get massages/and or try some herbs - maybe chinese herbs?
Then again - perhaps you have already done that. What I can do - is say that a lot of people care about you and all you do. and I am sending out prayers and hugs.

wish i could send a cure too

april[/quote]