Entacapone (second time round)

After 2 hours of painstaking typing I lost log. But with a few bites of dark choc. And my extreme stubbornness I will try again. I was diagnosed 14 years ago with Parkinson's. I was a teacher at our local college, competitive curler and training for my first marathon. I was in the best health I could be. I would occasionally trip delivering my rocks or fall holding the broom. I just put it down to being a busy working woman raising 3 beautiful daughters. I wanted to be in better shape and over a 2 year period I took up running in preparation for our city's 10 mile race and the onto a full marathon. I so well prepared except for the occasional bouts of fuMbling feet. I started to notice a weakness in my left side. I would occasionally loose the left leg. I would be running full out and down I'd go. I did all the normal thing such as changed runners, maintained a better warm up and drank more water. I then started to notice my left leg and sometime left arm having a life of their own. They would shake uncontrollably while sitting at my desk. I was rapidly loosing the feeling in my feet and the strength in my left arm. It felt useful most of the time.

I then became very sick. I had 3 tumours removed from my breasts(benign) and ended up with pneumonia. Even though I was physically in good shape I just could regain the movement and all I wanted to do was sleep.

I endured every test discussion, abuse to depression. Nothing made any sense and I was starting to question my body and mind.

After much deliberation "Parkinson's was mentioned, I had been tested for everything else" what did I have to loose. My great grandfather had been diagnosed many years earlier. The dr s had alway suspected my grandfather but he was never formally diagnosed.. I was in my mid 30's at the time and everyone said I was to o young.

My gp started me on a low does oflevodop-levocarb 100/25 2 tabs x 6 daily, I also. Take levocarb cr x 6 X-ray, mirapix 6 x day,rivastigmine3.mg x 2dAily. To help with my sleeplessness we have added co-quetiapine

Like a welled oiled car thing seem to be going alright. I had even stopped using my cane and my seizure medication. I seem to be having more seizures with the med. it also made me feel like I was in the twilight zone. Even though I was back exercises I didn't seem important anymore.

On my last visit I was resolved that my life was going to quiet. I took myself off the seizure med the alternative was not living. Not on to of everything else. I had done some research on the cyanogen diet. With the support of the genetic diet I feel I am making healthier . I am having very few seizures now and making healthy choices thanks to my dietician s

As a good team player we now have to reevaluate the Domperidone and Entacapone. The Entacapone causes hallucinations (pretty extreme at time), trouble breathing,my heart races even though I am extremely tired and can't sleep. It comes on about the same time everyday (noon), usually after the 2nd round,

. My Speech is slurred to the point that I am hard to understand but even more so. It is really hard to put 2words let alone 2thoughts together. I can't remember. It helps to take a lorazapam but I feel it I a bandage effect

Although this is extremely difficult for me, my husband and grown children my friends are blaming themselves . They think they have tired me out, etc.

I have surrounded myself with both professional and nurturing friends go all ages. I don't want to wear them out or scare them but most of all I don't want to give up.

11 Replies

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  • Sorry about the grammar and spelling errors. It is important to me to do my best. I just don't catch them anymore.

    My apologies

  • Based on the amount and types of medication that I and others that have PD were started on I think that that you may be on a very large dose of Levocarb to be starting off with. You may be over medicated.

    I strongly suggest that you get your Doctor (GP) to refer you to a Neurologist, if possible one who is a Movement Disorder Specialist. The first thing he will do is confirm the diagnoses which also may be wrong. MD's do not know PD very well and many other diseases look like it . Incidences of misdiagnoses of PD and over medication by Family General Practitioners is well known. Get a qualified second opinion.

  • Dear Cybersue,

    First of all, don't worry about typos - who cares about them? We don't. You have gone through a LOT, and still are. You are showing a ton of strength dealing with all of this. I'm new to Parkinson's myself and am trying to learn about it and how to deal with it, so I don't have anything helpful for you on that, but I just wanted to tell you that as a psychologist working with trauma survivors I've learned that the worst trauma (like what you're going through) seems to create a certain different kind of strength in a person, a strength that isn't always evident to them until odd moments when they least expect to become aware of it. I hope you won't despair. I'm glad you have both family, friends, and professionals in the community surrounding you. You sound like a very special person whose gift of stubbornness will stand you in good stead.

    Sending you a holiday hug,

    Leilani

  • I agree with GymBag & Leilani on all their suggestions. When I read your post, I too thought you were possibly overmedicated & should see a Movement disorder specialist.

    Leilani is also right on, you are one strong person!

  • The scary part is I do a very good movement specialist, a gerontologist and a gerontologist And they all talk and agree. Personally , I would rather work out the kinks in the gym and pool

  • Dear Cybersue .

    As a former competitive curler myself, I can relate to you wanting to do the best you possibly can all the time. As a skip my little prayer was "God help me do the best I can." I have essential/familial tremors that are controlled by a whey protein isolate daily (Canadian Company called Immunotec from Montreal, Que), B 12 shots, CoQ10 tablets & no gluten. Immunotec has done a lot of research with respect to Parkinson's. Hopefully I have given you another suggestion. Hugs & good curling, as the saying goes.

    Cheers

    Arleen

  • just wanted to say thankyou to cybersue for telling us your story thus far and i know what it feels like when the first post dissapears. You try to write it again but under duress as by that time your arms and legs are getting uneasy and its very uncomfortable and any energy is spent.

    and leilani23 i agree with what you say about the worst trauma creating a certain kind of strength that you are not aware off. The diagnosis of pd at 47 did not cause even a blink at the time nor since due to i believe a previous unrelated trauma which took a long time to recover from. Although not evident until certain times, I have become aware that it has almost protected me from being affected by what could be described as subsequent traumas. Im glad you found this to be true also within your scope of work ......

  • Hi night owls

    Wow, thank you for all of your words of encouragement. I have had a challenging week with my PK as you can all appreciate. I rested all day and ready to face what comes next. The specialist has tweaked my meds again and as you can all relate there will be a period of adjustment. At least it won't be boring.

    Have a great day my night owl friends.

  • I would certainly agree with Gymbag that it looks as if the medication you are on could well be too much. I am not a doctor, but I do know that rivastigmine is an anti dementia medication. My husband had to come off mirapex before he went on a different anti dementia medication. I would agree that you should definitely see a neurologist as soon as possible to get your meds sorted.

  • You are taking 2 Sinemet six times a day, then concomitantly you take large amounts (6/day) of Mirapex (interaction w/Sinamet=unconscious)? And you suffer sleeplessness? In my experience with both of those meds that would keep me in la la land all day and night. I'm just overwhelmed with amazement that you take both and still experience sleeplessness. And why take Mirapex during the day? It's designed to assist us at night to sleep without experiencing restless legs. Perhaps I should merely suggest another neuro to review your medication regimen , rather than what I wrote already. Whether you accept or reject speculative analysis from a complete stranger, you definitely are no quitter, pretty tough, I'd say. Best wishes to you and I hope I helped you in some way.

  • Hi cybersue. I was not able to follow your blog very well, but I gather that you are taking a whole lot of medication and not getting much benefit from it all. Some medications are prescribed in order to deal with the side effects of the medication you are already taking. This is a vicious circle. You don't know what is going on. As I have said in the previous post, NO PD MEDICATION DOES ANYTHING TO REVERSE YOUR PD! At least, that is what I believe from everything I have read. Some manufacturers claim that 'tests' show that their product 'can' slow down the progression of Pd, but no independent controlled scientific studies have ever shown this to be true. If they have, I would like to see them and then I will apologize for saying this.

    Therefore, if the meds you take do not stop any of your symptoms, then stop taking the medication. You may not be able to just go straight off the meds, but you can do it slowly.

    I have found that Pd affects all the movements that are controlled by the subconscious brain. Movements, such as walking, writing, bringing food to the mouth etc, were all learned when we were very young and were remembered in the subconscious brain. Since then, we have never had to think about how we walk or write, we just do it at will. NOW! these actions don't always work properly. Our legs don't work smoothly, while we are running or walking, they miss a beat and we fall or stumble. As a result of this finding, I have had to learn to use my conscious brain to control my walking and writing etc. You may not know how to go about learning to use your conscious brain, but it is possible and you can learn to do this and turn your life around. It costs nothing, only a lot of effort! But what else can you do that works? If you want to talk to me then email me at 'johnpepper@telkomsa.net' . I will attempt to help you.

    John

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