It's my health, my body...why is it that my opinion does not count? I am angry, frustrated and feeling helpless!

I was diagnoised just over 10 years ago and fought taking any meds for some time, untl my ablility to function was greatly impaired, which in turn greatly affected my mental state. I am currently taking Ropinirole, (0.5MG, 1 tab-4x dly) Carb/Levo, (25-100MG, 1 tab-4x dly) Entacapone, a generic of Comtan (200MG, 1/2 tab-2x dly) & Buprop, (100MG, 1 tab-2x dly). Though I don't know much of anything about my meds, I despise having to take them and how they make me feel. My neurologist worked with me to keep my meds to a minimum and taking baby steps with any med changes; I really liked and trusted her, she listened to me. Unfortunately, she just retired abruptly. I recently saw a new neurologist and refuse to go back, he read none of the notes from my previous neurologist of 10 years and when he saw what I was taking for meds, after seeing me for only 10 minutes, he wanted to change everything and increase doses, he said I'd be so much better. He never asked me how I felt or anything. Actually, after recently having left my high stress job, I was feeling quite well. I said that I opposed abrupt med changes and taking high doses as I am sensitive to meds and often find the effects worse than what I am taking them for. He then said that I should consider the DBS surgery. I was shocked, as I though that was a last resort and told him I thought that was pretty drastic at this point. He said that if I was going to be so difficult, that he may not be able to treat me. Unfortunately, he put all this in my disability paperwork, which I tore up. So I find myself in a rather difficult and perplexing situation, no neurologist, no disability and a husband that just wishes that I would not rock the boat, as we need the disability income. I just made an apt with a new neurologist, that can't see me for 3 months, so I switched my med perscriptions over to my GP doctor, as I have been with him for years and currently have no one else to sign for my perscription renewals. I had an apt with him earlier this week and guess what, the neurologist that I refused to go back to had contacted him and told him of my refusal to see him again. Even after I explained why, my doctor sided with him and thought I was over reacting and should reconsider going back to him (small rural community & they are in the same group). I feel like a little kid in class that keeps raising her hand, yet is never called on. Why is it all about the meds and the doctors, I am the one with this disease, it's my body; don't they care are how I feel, about amy quality of life, what I want? I am only 56 and have already been taking these toxic med for 8+ years. My desire is to find a happy medium between taking as few as possible, while still being able to functon. I can only imagine that it's the meds that will eventually end up killing me and much prefer that be much later than sooner.

14 Replies

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  • it sounds like your old doctor was over medicating and the new one you went to is just a jerk. I was diagnosed 14mos ago but I've had symptoms for at least 4 years. It took me two years to convince my GP that something was wrong with me. She thought it was just anxiety. You say you live in a small rural community. So do I, so I have to travel about 80 miles to see my neurologist. I don't know if that is possible for you ,but if it is find a neurologist who is a "movement disorder specialist". I take 12mg ropinirole ER once a day, 25/100 carb/levo 3x day and Azilect 1mg 1x daily. It has worked wonders. Tremors have just about disappeared, my strength and coordination are back. It's hard to tell that anything is wrong with me. Lucky for me I experience very little side effects from meds. I don't know what it will be like in 10 years but I plan on being here to find out. I agree with you on the DBS that is a last resort. I think you need to explore new med combinations. It will be hard but if you find the right doctor and med combo it will be great. One other thing. The best thing that I have found to help me, both mental and physical is exercise. And I mean exercise. Yoga is wonderful. I've been going to 4-5 classes a week plus some at home everyday. I also take what's called a core exercise class 3x a week. I also have an elliptical trainer that I jump on 3-4 times a week. I can't stress enough the benefits of yoga and other exercise. I know this sounds like a lot of work but once you start to feel the benefits of it you'll be hooked. Yoga is great for stretching your muscles and wonderful for your balance.

    Good luck

  • Hi Sedona. I fully condone what you are doing and share your suspicion of neurologists, who don't ask any questions but tell you to take a multitude of meds, without any examination. Who do they think they are? God? I am amazed at how much meds you were taking, when your previous neurologist left. You hit the nail on the head, when you said that after leaving your job you felt a lot better. That should have prompted you to reduce your meds to see what effect that had. Stress is a major factor in the progression of Pd. Avoid it at all costs,

    Pd is merely a shortage of dopamine in the substantia nigra. That's all! There is nothing wrong with your body or the rest of your brain. Pd medications all affect the way the brain works. Like any other drug; in order to get the same benefit, we have to constantly increase the dosage. This goes on until you reach the point where you cannot get any further benefit from taking drugs. So! Where to from there? Ah! DBS! They put a catheter into your brain and pump in another chemical, which appears to improve the situation. That has not proved to be 100% successful, but they don't talk about the failures. I know of at leat one. DBS does not slow down the Pd and it does not reverse it. The only thing that I know that can reverse Pd is exercise. You may not be able to exercise any longer, and I would not blame you for being frantic about your situation.

    Other patients I know have slowly reduced their meds, and made notes of what the effect is. Many of them have improved, up to a point where they started to go down again. They then went back to where they felt best. Try the walking route, it really does work, and it does not cost you anything! That is possibly why you are not told about it!

    Good luck!

    John

  • There are some Doctors that seem to want to take over and think they know what is good for us

    They do not listen to what you tell them they decide to put you on drugs that may not be suitable then leave you on them till the next appointment which may be a year before they see you again, and with only a five to ten minute appointment, there is not that much time to say anything of value.

    The trouble is if we need that disability benefit we have to co-operate which means if we refuse treatment it goes against us. It seems we have little control over our lives once we are chronically ill, especially if we rely on a benefit to get us through life.

  • I recommend the book The Parkinson's Disease Treatment Book: Partnering with Your Doctor to Get the Most from Your Medications by J. Eric Ahlskog. Reading it helped me to learn how to speak with the neurologist and advocate for what I wanted in my treatment. Many doctors are taught that they know more than patients do about illness and treatments, but each patient has a right to choose their own way they want to handle their illness and treatment. I found this book to be very helpful in taking charge of how my treatment and medications were handled.

  • Hi Sedona

    I empathise totally with you about not being in charge - although my dispute is with researchers - and the charities who fund them - who don't listen to what we PwP really want and need.

    I was lucky to meet Roger Barker of Cambridge (UK) Brain Repair Centre - who is leading the Trans Euro Stem Cell Trials and just happens to be the best Neurologist in the world. His view is you should not take the minimum of drugs just to keep you functioning but sufficient to give you a quality of life and I fully endorse that

    I have just finished an hour's workout (it's 08.40 in the UK) and I don't yet need my first dosage of my cocktail - as I always waken up "On". I will take them around 09.30 / 10.00.

    I take 5 doses:

    Dose 1 - 2 Sinemet 25/100; 1 Amantadine 100Mg 1 Azilect 1Mg

    +4 hours - 2 Sinemet 25/100; 1 Amantadine 100Mg

    +8 hours - 2 Sinemet 25/100

    19.00 - Requip XL 2x8Mg - I vary this

    +12 hours 2 Sinemet 23/100

    I have to say that when I started Azilect - on Roger's advice - it changed my life and made every thing work!!

    I have taken this cocktail for 6 years now and am pretty fit and active ( I do have dips in the evening until my second wind kicks in.- my own Neurologist has prescribed Madopar dispersible for the dips but I have Glaucoma in my left eye following a botched Cataract op and there is a contra indication that I need to resolve)

    I also exercise in gyms - boxing training twice a week; Yoga once a week, circuit training once a week. I exercise at home using weights on the days when I am not in the gym

    The combination of my drug routine and my exercise routine keeps me very active and one I would - as a PwP diagnosed 11 years ago - fully endorse

    Good Luck

    Bob

  • Hi Sedona,

    This new neurologist needs a poke in the eye for being so lofty. You say that you don't know too much about your meds. I suspect he assumes some superiority over you as he has the training and knowledge all about these meds. So I just wanted to suggest that it may be well worth your time and effort to get to grips with some of the technical stuff about the drugs so that this neurologist or any others of similar ilk can't take such an arrogant attitude.

    And regarding the PD drugs available there are only about 4 different categories and it is quite easy to get enough understanding to give any neurologist cause to give more consideration to your requirements. Also if you want you can go into a great deal of depth into the subject of PD and its treatments if you want. Bu if you're like me you can only go so deep into a subject and then start to get a bit bored. Anyway I feel to arm yourself with some knowledge may help you get a better response.

  • I agree (non-violently of course) . Anyone knows a pwp has to titrate. You can't just SUDDENLY increase all your meds. Anyway, the doc prescribes and I do what I want. So there.

  • Have you tried talking to a Parkinson's nurse .

  • That's a good idea. The only thing is they are not universally available.

  • No such thing in our area.

  • i can really relate to this,neurologists are above critisism they need to get down of their pedestals this is someones life,daughter,son,father mother etc we are talking about everytime this happens, i wonder if they would like it if it was theirs, i thought i had cracked it with my latest neuro,(my fifth) but its not looking promising.

  • Hi Sedona,

    We can all hear the frustration in your voice that comes from not being able to be in control of your own body even though we are the ones that have to deal and live with them. My husband and I have retired in Colombia, so in a way it is like living in a rural area in the States when it comes to availablility of drugs. etc. . However, we are able to buy most of them over the counter and the doctors are much more available and open to alternate therapies. That all being said, at the end of the day, I always seem to agree with JohnPepper and what he tries to encourage everyone to do - which is to exercise. I don't know why we don't all just get up and do just that. I now have those 2 goals when it comes to PD. Get off as many meds as possible and exercise as much as possible. It's the only way that we are going to feel that we are in control of our own condition. We won't be spending endless hours worrying about drs., medication, and where to go to get the service and who is going to pay for what. Exercise is free and we can get it anytime anywhere. For me, because of the perfect weather here, there is never a day that i can't go out for a walk. I try to concentrate on my lifestyle ( which coincides with and applies to everyone's interest whatever medical issue I have together with what my husband has ) and eliminate things that are not in my control or any dependence on those factors. Energy spent on worrying about those factors is a total waste of time, in my opinion. I try not to obsess about my PD, but work towards good health for both my husband and I - it's the same answer for all of us, don't you think? I love waking up in the morning, NOT worrying about medicare, neurologists, medication, insurance companies, etc. etc. The stress of all that is just plain bad. Good luck.

  • Hi Sedona. I know how you feel. I have had Parkinson's for 11 years now. I have tried all the meds you have and more. Neither medication or DBS can reverse your symptoms. I do lots of research every day. Here are the best answers I can find so far: 1.) check the internet for info on Dr Terry Wahls. Dr Wahls had stage 5 MS, and cured herself by changing her diet to the Paleo Diet. It seems that this diet also works on PwP. 2.) Check out the site fightingparkinsonsdrugfree.com (4 people, including the author claim they are totally healed after doing QiGong exercises and changing to a vegetarian diet. 3.) Find the closest Movement Disorder Specialist ( they are neurologists with an extra year of study in Parkinson's. 4.) Exercise daily as it appears to work better than any medication at reducing the symptoms and slowing the diseases progression.

    Good luck and keep in touch.

  • What type of exercise is best, cardio, weights or stretching? I don't feel safe walking on our rural roads, the terraine is uneven and I have been losing my balance more often lately, in addition to lightneadedness.

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