1st post- be gentle

hello- my name is Bill and today I was officially diagnosed with "a-typycal Parkinson's disease" caused by anoxic event following a severe heart attack.

The recovery was slow and steady until about ten years until I started noticing subtle changes in my condition manifest by lack of coordination (when I tried to swim I sank like a stone), but.no sigfificant changed in balance, and I was walking fine. I have yet to develop any tremors.

My neurologist first started my an Sinemet 25/100 which was stellar for movement- the 2d dose I climed 3 flights of stairs, I stopped the Sinemet when I developed severe paranoia and wicked constipation, and take it from me that's a combination I would wish on no one.

A variety of of drugs followed none of which were effective. He's going to try low-dose sinemet now, then he's talking spinal tap to drain ecessive fluid.

We shall see,

Anyways, thanks for letting me vent,

23 Replies

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  • Hi Bill,

    you can vent all you want.............and we all will listen.............!!! it is good to vent,get rid of the stress. we are all going thru similar crap. excuse my words.....

    we all understand what everyone is going thru....hard for those who are not Parkies to feel what we do.

    where are you from?? I am in Arizona.............

    keep in touch with all of us.

    Jaynie

  • Thanks for the comment- I live in Reston VA,

  • Hi Bill

    Welcome to the site. I hope you get the information you need and many laughs from everybody on here (although we all have our venting moments.)

    Wicked constipation can be due to Parkinson's too. Did yours go once Sinemet was stopped? Many people have constipation well before diagnosis so it isn't always the meds.

    Sue

  • yes- the constipation was gone after stopping the sinemet

  • I did not know sinemet could cause paranoia? Are you sure it was a side effect of the sinemet? So it improved. After you stopped the sinemet?

    Oh boy the constipation! I hear ya!

  • It caused paranoia to the extent my neurologist, after my description callit "psychotic". I stopped the sinemet but a re-stsring it at 1/4 strength to see if that might work.

  • I am so with you on the being gentle part, you have to slip into this new skin in your own time and way. Too much too soon can overload the arghhhhhhh chip..... and it sounds like you already had enough arghhhh!

    Kindest

    CHH

  • thank you

  • You are very welcome we are not a bad lot.

  • The ups was probably underlying prior to your heart attack but that was not the cause of it. Constipation prevents absorption of the medications from the gut to the brain and the paranoia may have been a accumulation if all your media in your gut. All infections or other illnesses impact on iPd and the treatments so if you have any underlying issues your medications will struggle to have any impact on improving your symptoms. Trust your team and keep badgering then with questions. Good luck

  • the brain inury was was caused by my losing all oxygen during the resesutation or some point during that process. It was a real long process, I am told. The term is "anoxia"

  • part deux- it took 10 years to develop, That's the mystery to me

  • my pd became apparent following a thyroidectomy, 9/11, and the death of my son in 2002. In hindsight I see I had signs of it--left arm did not swing, left hand clutched, constipation. I was put on sinemet after a disastrous run on requip and mirapex. Wish I had tried azilect before sinemet but could not titrate. I would love to take a drug holiday, but doc says no. Good luck. Constipation is a symptom of PD as well as a result of the meds. Keep us posted as to how it's working out with you. Where else can you read this kind of stuff :D

  • Hi Bill something you may want to ask your doctor if Sinemet was working for you. I had problems with Sinemet as well I would develop sever dykenesis after taking a dose. After taking with my doctor I switched to first dose a full tablet, then for the rest of the day cutting the Sinemet tablet in half and taking half every 3 hours. The first dose I couple with Azilec my multi vitamin and a big old glass of Metamucil for constipation big difference everything is fine now.

    Working in the medical field I don't understand the significance or benifit of the spinal tap. Unless he is checking for possible bacterial or virus infection that led to severe paranoia. Hang in there though PD is a lot of trial and error in finding what is right for you at the time

  • he's checking icp and plans to draw off some of the fuid and to place a stent hoping (I guess) to releive the pressure in the hope of improving my gait. Thanks for the comment

  • i am successfully using psyllium husks to prevent constipation - it is good to take it on regular bases -on empty stomach with (important!) full glass of water. it is natural fiber, good for anybody - just be sure to read the instruction. it has to be taking immediately after stirring and with enough water to prevent choking. or you can put it in your oatmeal , etc. you also can buy capsules, but i used to buy it from trader joe's or whole foods loose.

  • thanks- I will give it a go

  • welcum to d site try prunes and prune juice works g8 for me

  • thanks

  • hi and welcome 2 the site

    i have prunes on a daily basis 4 the constipation probs - prob cos i cannot exercise nearly a smcuh

    cannot swim any more ( i just sink liek you )

    and cannto walk on my own any more - fear of fallgin which i do regularly - 4 times daily- but apart form bruise si am ok !

    i ha ve PSP by the way - no meds to take for it and therefore no side effects

    i tried sinemet and amantadine andthehy made no difference to that is another way of diagnosign the ePSP - whene the traditional parkinsosn meds do not work

    read myi nblgo on myhk othe rsymptoms and how i was dxd#

    lol jIll

    :-)

  • I'm sorry you can't walk- it's an increasing difficult task for me, and whether that will imrove at this point is a very open question.

    After Sinemet (which i'll be starting again at 1/2 strengh) I was on Miripex which was worse than nothing by a long shot- I could hardly stand up.

    I think I have succcessfuly beaten the constipation problem with Miralax which works well if you also drink enough water to float a balleship.

    I can't use prune juice firstly because I think it's heinous, but more also because I'm diabetic. Not that I keep strick control of my diet, mind you- but it does make a stellar excuse, eh?

    Thanks for the post, Bill

  • HI BILL

    I CAN WALK A BIT UNAIDED IE I WALKED IN TO A CHURCH TO PERFORM IN A CONCERT - NO STICK ETC I WAS FINE BUT WOULD NOT GO OATU ON MHKY OWN ANHY MORE AS I C OUDL WELL TOPPLE OV ER - MY BALANC EJSU TGOES!!

    BUT I AM "GOOD" AS HTE YOOUNG PEOPLE SAY AROUND HERE

    AND AM NOT BEMMOANING MYH FATE - OTHE RTHAN WHEN I STAR TTHE DAY BY FALLLING OVER AND IT CONTINUES IN THAT

    VEIN

    MY TYPIGN IS TERRIBLY DYSLEXIC NOW TOO

    I WAS ONC E AGOOD TOUCH TYPIST BUT ONE HAND IS STRONGER THAN THE OTHER

    SORRY HOPE U CNA UNDERSTAND

    PRESCRIPTION PAINKILLLLER S ADD TO CONSTIPATION SO I TRY TO AVOIDTHEM TOO

    BUT AM HAVING A DIFFICULT WEEK WITH CONSTI[PATION AT THE MOMENT

    I NEED TO EXERCISE A BIT MORE AND HAVE SOEM RED WINE TONIGHT!!

    I HAVE HAD THE CHOCOLATE NBAR AND ATHER PRUNES AND SOME MOVICOL

    BUT PERHAPS TOMORRWO WILL BE A BETTER DAYU FOR HTAT

    LOL jiLL

    :-)

  • Mr. Bill, welcome to the land of shake, rattle, and roll! I'm new to this too. Sometimes it helps to vent to people who understand. My husband is still in denial which is sad. But I come here to this site with all these nice, nutty people and vent away. I'm glad MJ Fox has such a positive attitude but it's irritating when everyone around you wants you to have the same attitude. It makes them feel better, not you. The truth is PD sucks but we're listening..... :)

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