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Good evening...another nice day apart from the sudden downpour but that's good for the garden at least.

 

Marcia, the last time I camped out was in my back garden as a child and my 'tent' was made of bedsheets pegged to garden chairs. It had usually collapsed by morning. It sounds like you struggle a bit but still carry on which is great. I'd like to ask, you've mentioned a couple of times you are not on meds for reasons around swallowing but also other reasons? I'm curious what these are - obviously only if you want to tell...

 

 

...And a good evening to everyone else. I've had a good day, both pd and non-pd - what could be better.

 

And hi to 1of7 as always

 

Gazelle x

I didn't see this question and that is why I'm answering late.

 

I don't take meds yet because:

1) I hate taking pills.

2) The expense.

3) I have a very sensitive stomach.

 

I went through cancer treatment and chemo made me extremely ill. A year or so ago a dermatologist had me taking pills for a rash problem and they upset my stomach and reminded me of the chemo days. I just don't want to live my life sick. I'd rather shake but I might rethink this later and change my mind and try it. Just feeling my way along.

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Morning all. Morning Marcia, thanks for sharing your experiences - I agree with you, feeling sick is the most awful feeling and I can see why you are resisting medication.

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The sun is washing across the sky with tendrils of light

A new day dawns, Birds twitter, worms are hiding in fright.

I sit with a coffee, I scan down the laptop's blue face

And ponder how I came to this medical situation and place.

But one thing is sure and I say this from deep in my heart.

I care for all of you, and at this chair is how I start

My day and whatever it brings, whatever gains I can snatch

I like to read this message board and attempt to catch

Up on the news. I care how you are feeling, how you fight

Your Dragons, care for your kids, and still take a bite

Of the apple called Life. And continue on your quest

To live Normal, whatever that is. We try our best

We have to. And although Life sorta became more

Harder and shaky hands drop toast to the floor

We can hope to beat the dog getting it first

And hope the jam is up. Quitting is worst.

It takes big effort To live each day out

With honour and pride and now we shout!

"Is that all you got?, I can take it

Bring it on" And into each day fit

As much good as you can. We shake,

May drag a leg, It doesn't make

The person we are; it's heart

That we need from the start.

You all inspire me, I got

Your Back. Laugh a lot,

Cying too is required.

But don't get mired.

Goodmorning to you

And in all you do

Try to be Strong

Your pal, John

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The sun is washing across the sky with tendrils of light

A new day dawns, Birds twitter, worms are hiding in fright.

I sit with a coffee, I scan down the laptop's blue face

And ponder how I came to this medical situation and place.

But one thing is sure and I say this from deep in my heart.

I care for all of you, and at this chair is how I start

My day and whatever it brings, whatever gains I can snatch

I like to read this message board and attempt to catch

Up on the news. I care how you are feeling, how you fight

Your Dragons, care for your kids, and still take a bite

Of the apple called Life. And continue on your quest

To live Normal, whatever that is. We try our best

We have to. And although Life sorta became more

Harder and shaky hands drop toast to the floor

We can hope to beat the dog getting it first

And hope the jam is up. Quitting is worst.

It takes big effort To live each day out

With honour and pride and now we shout!

"Is that all you got?, I can take it

Bring it on" And into each day fit

As much good as you can. We shake,

May drag a leg, It doesn't make

The person we are; it's heart

That we need from the start.

You all inspire me, I got

Your Back. Laugh a lot,

Cying too is required.

But don't get mired.

Goodmorning to you

And in all you do

Try to be Strong

Your pal, John

 

Good morning/afternoon all..wow john what can i say only you sure have a way with words...have a good weekend everybody and take care..em

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jb, I liked the way each line on the poem got shorter and shorter. That is different. If you held it upside down it would look just like the vase my nephew made in grade school (pottery class). The only point I differ on is the "bring it on" part. At one time I thought that but after all this s@@@ we've been through I say, "Please don't bring anymore on." Notice I said 'please'. I also censored myself.

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Good morning all. Hot as hades. 85 degrees at midnight. WHEW!

 

Regarding cancer treatment - I too had cancer treatment but was lucky and it was a piece of cake so to speak - 8 weeks of 5 minutes a day, 5 days a week, no chemo and almost no side effects and now have the "all clear". So far so good. One day at a time. My aunt had ovarian cancer and her first chemo and radiation were very bad but she had a recurrence each five years and the next time the treatment was much less difficult. Her last treatment fifteen years after the initial diagnosis was just an inconvenience - almost no side effects - so they are doing better at controlling the side effects for anyone facing this and there are so many more good choices now also. The aunt, by the way, died from pneumonia about a year after she had been cleared of the cancer because she never would stop smoking, she got the flu and her lungs were in such bad shape the pneumonia killed her. I'm still angry at her because she had a fairly young daughter who really needed her. I still want to put a pack of cigarettes on her tombstone and write "HER ONE TRUE OVE" beside them. I know it's an addiction that is horrendous to break but she had no smokers in her family and many who would have supported her if she had wanted to quit.

 

On MEDS: I've taken a bunch and totally stopped taking any twice (DX 10 years) to see just what was the PD and what was the meds to I can at least share what kinds of side effects you might have and the advantages of each med

 

Azilect - a "good drug" that is also incidentally probably an antidepressant. It didn't help my PD and made me faint but then I'm very prone to this as it is an inherited condition. If you don't have blood pressure fluctuations or have mildly high blood pressure you might actually like this drug. This is one I'd suggest you try first. It does help some people but not other.

 

Amantadine - I took it briefly but as my tremor is very minor I didn't really notice much change. Some have problems with it. I did not.

 

Requip and other agonists including the neupro patch - these turned me into a total zombie, I fainted all the time, slept at least 16 hours a day and wish greatly that I had gone straight to sinemet instead of taking this drug. It does help some people, especially those with restless legs. I also had compulsions from them and severe anxiety attacks coming off them. The main thing is, even at high dosage it DID NOT help the PD symptoms. I was drooling, had severe constipation, freezing, short steps, all the full blown PD symptoms even on a high dosage. If they help you, you still need an outsider to monitor you at all times because there are some seriously weird side effects.

 

Sinemet/dopamine - Sinemet works for true PD. For me it stopped anxiety, short steps, freezing, constipation, drooling, low speech, small handwriting and tremor. The BIG problem and it is a big problem, is to get the right dosage and make sure you have the right dosage in your brain all the time. I can't do this so I can't plan anything in the future. I do things when I'm fine and when I'm not, I stay put and do what I can to get the dosage corrected like taking half a tablet, drinking coffee to empty my stomach, reducing protein intakes, eating smaller meals and so on.

 

So what this means is that this drug can give you your life back - but not all the time. There are a lot of tricks you learn, taking the drug on an empty stomach and so on but none of them work all the time. BUT I'd rather have two off hours and 14 on hours than not take it and have 24 off hours, so I deal with the problems as they arise. And they arise. I and my SO fell in the middle of the street in Charleston when I had a crash (low drug) and stumbled and our feet got tangled. It wasn't fun but we got a lot of help and got to the restaurant and my meds did kick in.

 

side effects - when I take this drug I will get a vegus nerve response after meals and bowel movements so my blood pressure will drop quite low. Remember though this is an inherited problem I have that this med just makes worse so most don't have this. If I take the control release it will build up in the afternoon and I'll go mildly manic/drunk and think I can do more than can safely do. I stopped taking the controlled release except one at night so I don't have this problem often. Large meals will stay in my stomach too long so the drug doesn't kick in so if I need to be very functional I just don't eat or eat very very lightly and eat a big meal at night where it doesn't matter if I can't walk well.

 

I can still walk, stop, sit, get up, with no meds but I'm the great hunched over stone man. My speech is too soft, I'm anxious and apathetic. When the sinemet kicks in I'm pretty normal but one dose lasts three hours and if the next one is stuck in my stomach I revert back to the great stone man again.

 

Your other option if you can't do meds without unacceptable side affects is dbs or deep brain stimulation. Three family members and one colleage had this done with amazing results - totally back to normal for them. BUT you have to show that sinemet/dopamine works and works well for you before any of the surgical teams will accept you for the surgery. Movement disorder doctors can test for this right in their office. The surgery has quick recovery and none of our family or friend had any major problems but as with all surgeries there are always potential problems.

 

So to avoid the meds without trying when you are seriously having problems is like trying to get around with a broken leg without a cast or crutches. They may not be right for you but you don't know if you don't try.

 

So good luck and hope you find something that helps really well. What happens when you wait a long time before going on dopamine is that you just have to take a higher dose for it to work. This is what happened to me. I wish I had had a knowledgeable person tell me that sinemet doesn't turn you into a writing jerking out of control person I wouldn't want to be because when you have a good doctor and properly adjust dosage this doesn't necessarily or typically happen. There are a number of people on here who have taken sinemet for 20 years without that side effect. And if you don't like the effects, you stop taking it under doctor supervision. It's not addictive and it doesn't make the PD worse. You just stop taking the drug and go back to where you were before.

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Thanks NG. I'm getting to a point I'm more willing to try but have another health problem which I need to have checked first. I used to go to the doctor for a check-up and he'd say I'm healthy as a cow. The problem is there is hoof and mouth. He either didn't know this or was a fortune teller.

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Good morning everybody..beautiful morning here sun is shining..I'm going for my walk now ( promise i'll be extra careful not to fall)

and thanks again guys for been here..have a good day and take care..em

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Good morning Everybody. Heh, Marcia I'm sorry that you have had medical problems in your past,and now PD is with you and you need to see the doctor again. I hope that you hurry in and get your worries resolved. Here comes a Healing Hug, gripping you with Love, concern and friendship with all that entails, racing through the wires to you. Take care Mighty Marcia.

 

And Em, relax, you won't fall today. Take your time, be careful, let those knees heal up. Remember that your friends are all right here all the time hoping for you and we will catch you if you stumble.

 

Everybody else. Have a good day. Drive somebody crazy with cheerfulness. john

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Good morning Everybody. Heh, Marcia I'm sorry that you have had medical problems in your past,and now PD is with you and you need to see the doctor again. I hope that you hurry in and get your worries resolved. Here comes a Healing Hug, gripping you with Love, concern and friendship with all that entails, racing through the wires to you. Take care Mighty Marcia.

 

And Em, relax, you won't fall today. Take your time, be careful, let those knees heal up. Remember that your friends are all right here all the time hoping for you and we will catch you if you stumble.

 

Everybody else. Have a good day. Drive somebody crazy with cheerfulness. john

 

Good morning friends..Hope you all have a good day.

Hugs from Eire

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Hi everyone....I am catching up on news here. My husband and I were busy helping our daughter move. All the kindness and caring here keep me coming back. The poetry over the last few days has been wonderful, both, about jb (Gazelle) and that written to all of us(jb). What a way to start the day!

 

I am thinking of you all as I start my day...heading into a busy month...I may not get to answer as much as I would like to but I will be checking in as time allows and much more after our move is complete.

 

Have good days everyone!!

 

Eileen

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Howleen, The pack has been missing you! Glad to hear from you. It is a big job moving, take care. Do you still have that strong backed fairy from 1 of 7? Take care Dear.

 

NG, I had a Parky meeting on Sunday and 1 guy who is on Sinemet was on a drug trial for a different releasing agent. The trial is wrapping up but he found the drug dramatically reducing both his highs and lows and will be allowed to continue using it even though it isn't on the market for another 3 years at least. And I hope the weather cools a bit for you.

 

I'm working out of town starting today at my daughters putting in a bathroom and walls in her basement and will be staying there off and on. (depends how noisy the grand boys are, haha) I may not be posting as much. Em, its up to you if you don't mind to keep everything going and people in line!

 

Good morning everybody, good days and health to you all. john

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Hi all. It's sunny and hot here but it's also August and it's always sunny and hot in August.

 

Don't worry jb, we will help Em keep the site moving. I just volunteered you guys. hee hee.

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Howleen, The pack has been missing you! Glad to hear from you. It is a big job moving, take care. Do you still have that strong backed fairy from 1 of 7? Take care Dear.

 

NG, I had a Parky meeting on Sunday and 1 guy who is on Sinemet was on a drug trial for a different releasing agent. The trial is wrapping up but he found the drug dramatically reducing both his highs and lows and will be allowed to continue using it even though it isn't on the market for another 3 years at least. And I hope the weather cools a bit for you.

 

I'm working out of town starting today at my daughters putting in a bathroom and walls in her basement and will be staying there off and on. (depends how noisy the grand boys are, haha) I may not be posting as much. Em, its up to you if you don't mind to keep everything going and people in line!

 

Good morning everybody, good days and health to you all. john

 

No prob jb..cheers mj..think we'll be ok what do ye think guys will ye behave until jb gets back?

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hey, we could have a wild party....Em, as nominated person in charge it would be your duty to keep us in line!! Only joking though - i'm more likely to be tucked up with my cocoa and nintendo ds for company....yawn.

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Good morning everybody..almost 7am here so most of you will be in dream land now. Have a good day all.

Take care em

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Good morning everybody..almost 7am here so most of you will be in dream land now. Have a good day all.

Take care em

 

Good Morning Em...and to all. I've been away on business for the past few days so I'm now trying to catch up with everything. It's "monsoon" season in Colorado so we spend the day watching these enormous cloud formations build up over the mountains during the day and then sit back and view the most incredible displays of lightning you can imagine followed by some drenching downpours. It's rare to have a soft steady rain around here...it's all or nothing. But, I can't complain...the snow will be here before we know it!

Em...I'm hoping and praying that you are well and that you're finding yourself at the beach more often. DK...hang in there, my friend. John...hope all is well in the Dominion...Take Care everybody...Bill

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Hi all, I am totally cream crackered - up at five for work - it's all getting too much. Quite frustrating day, because we were very busy and I seem to get quite shaky when under stress like that. Also, I had to write a lot in front of people and my handwriting kept degenerating into an illegible scrawl. Still, I guess I should be thankful that I can work, so enough moaning. Have been thinking about finishing DK's story but don't want to step on anyones toes - anyone else fancy this?

 

Hope everyones ok today - Em, is your son back home now?

 

best wishes to all

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gaz, I think who ever gets to the story post and adds to it first gets to add to it. I don't think we have toes left. They all curled up.

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Hi all, I am totally cream crackered - up at five for work - it's all getting too much. Quite frustrating day, because we were very busy and I seem to get quite shaky when under stress like that. Also, I had to write a lot in front of people and my handwriting kept degenerating into an illegible scrawl. Still, I guess I should be thankful that I can work, so enough moaning. Have been thinking about finishing DK's story but don't want to step on anyones toes - anyone else fancy this?

 

Hope everyones ok today - Em, is your son back home now?

 

best wishes to all

 

Hi guys..Bill thank you for your kind words..i do try getting to the beach as often as i can just is a bit far away from home. Thankfully the sun is shining here again today i managed to paint the shed..it's nice to hear from you Bill as always..take care.

 

Gazelle...go for it story needs an ending and i'm sure you won't be stepping on anyones toes..sounds like your over doing it..slow down if possible or as your advice to me would be pour yourself a brandy..please take care gazelle..yes my son is back home got a lot of jobs done for my sis so he's happy with the extra cash.

Em

Edited by em45

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ha ha, yes very good advise Em - I don't often drink but I think a relaxing tot in my coffee would be lovely tonight. I don't mind finishing the story but wonder if anyone has any ending they would like to see - getting back together and going off into the sunset just seems too predictable! Any thoughts welcome. What about DK - i'd be interested to know where you thought the story would go.

 

.

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Good morning all, Bill how's the weather there has it calmed down? DK let us know how you would like the story to go, i know how i'd like it but this is your call. take it easy today gazelle if you can..and mj your right all toes have curled up..

Enjoy your day everybody

em

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It is like what I imagine a steamy hot jungle might be like here yesterday and today. ...will be soooo happy when the temps come down and the humidity decreases. Have good days everyone.

 

Eileen

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It is like what I imagine a steamy hot jungle might be like here yesterday and today. ...will be soooo happy when the temps come down and the humidity decreases. Have good days everyone.

 

Eileen

 

Hi Eileen..nice to hear from you we're hoping the temp rises here we've had a few nice days but rain also.. how's the move coming along? takes a while to get settled and your knee any improvement? how are you today gazelle?

Take care everybody

em

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