I f you, like me, have several Doctors who help you monitor and treat your health issues then you must must make a habit of up-dating, reviewing and questioning your medications on a regular basis. I have found that almost every time I see my Doctor, weather it be my Family Doctor or one of my many specialist they seem to want to add or tweak one or more of the medication I am on. If I have developed a new symptom then the Doctors want to give me a new medication to help alleviate the problem. 8 months ago I began a downward spiral. My hands and feet were swollen so bad I could hardly walk, my mind was muddled, a nasty infection had invaded my body, I was cranky and irritable and in so much pain that all I wanted was to die. I kept going to see my doctors desperately begging for help telling them there was something seriously wrong, I told them I was dying. One doctor, my Neuromuscular Specialist in St. Louis began questioning the 24 different medications I was currently taking. Going over each medication, the purpose for my taking them and if I thought the medication was working. We started with Mirapex, which was suppose to help with the dyskenesia. I was still having a lot of movement so we began to back off this med. The swelling in my hands and feet went down and I began to think more clearly.Then we did the same with gabapentin, the rest of the swelling disappeared, and my thinking sharpened and the extra movements I was experiencing was having diminished considerably. In the past 6 months I have dropped from 24 medications a day to 19 and every time a Doctor wants to add a new script I question the purpose, side effects and possibility of waiting out the symptom or looking for a more natural and less caustic way to alleviate the problem I am feeling so much better! I am thinking much more clearly and I am able to control my pain and moodiness much better. My quality of life is improving and I am so much happier and feel as though I am in control of my life.
Do not walk blindly through Life, participate in it!
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jupiterjane
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That really sounds like a lot of medications especially considering drug interactions. Are you off Mirapex completely now? When I see my neuro next week I want to see about going off Mirapex. Do you still have dyskinesia? My neuro is keeping me on minimal meds to prevent dyskinesia that i'm prone to and so far do good. So good to learn you are doing much better. Are you able to exercise?
I fully support your advice to be actively involved in monitoring and questioning our health treatment. Your example while true to some extend for all places is particular to the USA. So what Im wondering is whether in the US reports are sent from specialists, to GP or neuro? Does one person coordinate or have overall oversight of all your Parkinsons treatment?
Ah! Such an important question! From the very beginning I kept all copies of test result and made sure every Dr, I see gets a copy. I also gave permission for all my Dr.s to contact and share information about my health, even if they are affiliated with different hospitals, even my neuromuscular specialist who is in St. Louis which is 4 hours away. Most of the responsibility for my health lies with me. I hate breaking in new Dr.s and usually ask for a double appointment on the first visit just so I can bring the new Dr. up to speed on my health issues.
Oh wow that is quite a task! It is quite different to my experience.
While I get copies of most things the GP usually writes the referrals and then automatically gets report letters from any specialist I might see including A&E (ER) visits or in patient stays. The neuro sends a report to the GP after each visit with any med changes. Drug prescriptions are all from the GP so she knows all that I am on and all meds generally are dispensed by the one pharmacy who in theory will keep an eye on interactions etc.
depending on the GP meds should be reviewed quite regularly particularly when scripts are prepared.
Of course there is variation in how thorough a GP is in following up and reviewing, we still are very wise to monitor our own care.
I suspect that everyone on this forum who is outside the US has a somewhat similar system to this.
I have found that a lot of my dyskinesia was a result of the drugs I was on. I have many health problem, one being a rare neuromuscular, auto-immune disease which makes it impossible to exercise. This disease causes severe muscle pain from constant cramping and leaves me exhausted before my day even begins. Even though my Parkinson's was diagnosed first they, (the specialist), believe my P.D. may have been brought on by the neuromuscular disease. In my quest to find more quality time in my life I have to question how and if my medications effect my daily life. I also try to keep a positive attitude, meditate, pray, watch my diet and continuously question and review the medications I put in my body. It is a work in progress, I am a work in progress.
I'm sorry you cannot exercise - I was unaware of that when I posted my first reply to you
Having said that, have you ever heard of the Ronnie Gardiner Rhythm Method (RGRM)? I first came across it at the WPC in Glasgow, Scotland.
Google Ronnie and you will see the types of exercises he does to music. You can do them sitting or standing. He invokes the two sides of your brain during the exercises and I think it is marvellous
Ronnie is an ex Louisiana jazz player who lives in Sweden and developed his method initially for Stroke victims and was then asked if he could adapt it for PwP
Hello jupiterjane & Hikoi. Re recording info on drugs, effects (+ & -), symptoms & therapies I recommend PatientsLikeMe (PLM) an American website one of whose founders, Paul Wicks, is a Brit. I've been a member since it was founded & I find that looking back over my records it is very easy to pick up patterns, fads & fashions in the world of PD & its treatment. I find that my memory easily distorts past experiences especially as over time I have developed new conditions (eg heart attack) with associated new meds.
Hikoi, your experience re sharing info amongst professionals is very similar to mine with one exception. I discovered after my second heart attack last November that if one is not admitted to hospital the notes from A&E are not passed on to GP or PD consultant. As a rule visits to clinics (& any resulting changes in meds or regime) are shared with me, my PD support team - GP, PD nurse, PD physio - & consultants managing other conditions.
When I read about the quality of some systems give I thanks for the much-maligned NHS & for
CureParkinson's for empowering & enabling us via this site.
good for you. get off dopamine agonists if you are on regular pd meds. my pharmacist is good at pointing out interactions. also here in new york the first thing they do is review the list of meds in the computer. all but one (my GP) are on the SAME NETWORK! tHANK you, affordable care act
I really admire you for your perseverance and think you are lucky to have had such a forward thinking specialist. I had a PwP friend who was in such a state that they took him into hospital in London and weaned him off all his drugs and were more or less going to start again - unfortunately he died of a non Parkinson's cause
I was lucky when I was first diagnosed in June 2003. The Neurologist in Edinburgh was, frankly j - just brutal in his delivery of the diagnosis and I took nothing in so I asked for a second opinion and met a Neurologist whose main discipline was MS
He was very happy to listen to my suggestions about drugs which I had researched - following his first recommendation Ropinirol which just made me sick. Not being a Parkinson's specialist he had no belief that he knew everything so I became his guinea pig for Sinemet and Amantadine. I fortuitously met, who I think is the best Neurologist in the world , Roger Barker of Cambridge Brain Repair Centre, who agreed to see me and suggested I add Azilect to my cocktail (and my MS specialist agreed to let me try it) and this changed my life - either it or the combination made everything work and I have been on this cocktail for 6 years now
I exercise a lot - have recently added boxing training to my exercise schedule - and find that with a good night's sleep combined with my drugs and exercise I live a fairly active life
I believe - as do many PwP - that Azilect is a Neuro-Protective and that Amantadine keeps Dyskinesia at bay (there was recent research that proved the efficacy of Amantadine on Dyskinesia)
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