My start with PD was very much like yours, only it took place 16 years ago. I had some of the same symptoms, and my natural tendency was to delay taking medication of any kind. But when the symptoms increased to the point that they were either noticeable to others or bothersome to me, I started taking meds. I have never regretted my decision. Not everyone has side effects; I have been fortunate in that regard.
I think of the meds in two categories: those that delay PD and those that counteract its symptoms. This is merely my personal opinion, of course, but I believe there is no reason to put off taking a medication that could slow down your case of this disease. As soon as Azilect (rasagiline) came on the market here in the U.S., my doctor prescribed it for me. Taking one mg. per day made me a bit dizzy, so we immediately reduced that by half. About eight years later, I am still taking that dosage, and my case has not progressed! People who meet me are usually quite surprised to learn that I have PD. I still play classical piano, hike three or more times a week, work out at the gym, manage my own household (I was widowed last year), and generally live as I always have.
The med that manages my symptoms for me is Mirapex (pramipexole). Those initial symptoms I mentioned above were all eliminated within a week or two after I started on a small dose of Mirapex. This drug doesn't work for everyone, but it has been miraculous for me. I now take a maximal dose (6 mg. per day) and have never had any side effects from it. With Sinemet I have much less experience, so I will not comment on it, but I know lots of others on this forum take it and could tell you their long-term experiences.
Your case may not follow the course mine has, but I at least wanted to share my good fortune with medications. Although I have had PD 16 years now, I can overlook it and continue my life without much difficulty yet. I recognize that the hardest times are ahead, but I maintain my optimism. Keep smiling!
Researchers say that a new non-dopaminergic drug called pimavanserin may be the first to offer safe and effective treatment for patients who experience psychotic symptoms associated with Parkinson's disease. This is according to a new study published in The Lancet.
According to the research team from the US and UK, of the 10 million people worldwide who have Parkinson's disease, more than 50% of them can experience psychosis, mainly in the form of hallucinations and delusions.
"Psychotic symptoms are common and distressing for people with Parkinson's and those caring for them," says Prof. Clive Ballard of King's College London and study leader.
"Psychosis is a major driving factor for people with Parkinson's disease being admitted to nursing homes and substantially increases the risk of dying. But no safe and effective drug therapies exist."
At present, Parkinson's patients who suffer with psychosis only have the choice of antipsychotic drugs - such as clozapine and quetiapine - as a form of treatment for psychosis. But Prof. Ballard says that these drugs may worsen motor symptoms of Parkinson's, speed up cognitive decline and can be life-threatening even with short-term use.
Good afternoon Hazysunshine
Thought you may be interested in the new hopeful medication "Pimavanserin" which if you google you will find more info
Best Wishes Beano
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New drug 'safe and effective' for Parkinson's psychosis
Could I ask how long you have been diagnosed, I was diagnosed in 2008 and have quite a bad tremor on right arm. At present medications I am taking do not seem to touch this so was interested to hear that Requip XL9 did control your shake at present I am on Rasagalin, amantadine and mirapexin not really sure if they are doing any good. I have taken medication since being diagnosed so not sure how I would feel without them. I do suffer as you with fatigue and get very breathless when walking up hill or up stairs. Have been told this is probably not a symptom of Parkinsons. Has anyone heard that breathlessness is associated with Parkinsons.
I was diagnosed about three years ago, but reluctantly started meds August this year. I am on 4mg Requip XL slow release, feel really good on them, but consultant said it will not cure the shakes unfortunately!Don't suffer from breathlessness as you do but do find it difficult walking uphill and up stairs I've just put it down to muscle problems in parkinsons,
I have no proof of any conection. However I now get breathless. I put this down to the fact that my reduction in physical exercise has reduced my lung capacity.
I get hiccups which no one else seems to. Just one before I speak.
There are so many side effects it wouldn't surprise me if I got out of bed one morning and spasmodically broke into River Dance.
I have done many things in my time J, some foolish, some wise, some would make you rub your eyes.
River dance as yet is not one of them. Should this occur I think my wife would die laughing. Mainly because I don't own a pair of pyjamas and it would look like a jelly in an earthquake. Not a pretty sight, or one to contemplate.
Should it be videoed it might get a few hits on You Tube and me laughed out of the village. PD UK would ban me, DWP would find me a job pole dancing and Michael Flatley would probably sue me.
Let's just hope they get my medication right, for the sake of the human race.
Funny you talk about Riverdance, my right leg who I call Elvis, just loves Riverdance, and has a great time when we go to the theatre to see it and left leg called Elsie also joins in, at least I don't look out of place there !
This is very interesting to me all of you re meds.
i was diagnosed 3 weeks ago, consultant gave me levadopa, made me so sick,lost appetite, can't afford to lose more weight. Stopped them soon see parkinsons nurse to discuss.
i believe in exercise, swim or walk in water once a week, go for hobble walk with stick and husband , have exercise bike . Always been active. Will ask re physio for foot too.
i have mainly good nights , helps muscles all morning . Stiff as day goes on. Especially after sitting .
I am not good with any tablets , will try to stay off medication as long as I can , as long as I can do things in house with husbands help sometimes, and go out . Find pushing shopping trolley most difficult , do do some on line.
Everyone says I am positive , can have a laugh when things go wrong!
It sounds as if you already have two of the three factors I believe are best for combatting PD symptoms and progress: a positive outlook and regular vigorous exercise. The third, when you're ready for it, is the right combination of medications for your case. I delayed taking any meds until my symptoms were getting troublesome and changing my daily life. I've had PD 16 or 17 years now, so when I started on this journey, there were no drugs for delaying progress of PD. Those are the ones I'd recommend taking first, then the DA's for fighting symptoms. The usual disclaimer: I am no doctor, and I know that each case of PD is unique. But it seems sensible to me to begin delaying the disease as soon as you can.
Since my post in October with the sound advice from a great physio at my local gym and the gym manager I have been given exercises to do at home and a programme of exercises to do in the gym.
At the gym I start off with the rowing machine for general mobility then I have a series of stretches and balance and strength exercises that I do in the Kinesis room. Kinesis uses pulleys that can have varying degrees of resistance, so my good side has more and my 'parkie' side has less. You can work each limb separately. This helps as PD can make you think you are applying equal force when you aren't.
Before I began this regime my frozen left shoulder meant I had much pain, couldn't sleep on that side, couldn't lift my arm very high, couldn't put my arm up to even hold a stair rail etc and had been a huge problem for six months. I really thought I would never get any movement back.
My physio carefully guided me through 'enough but not too much' exercise and gradually adapted the stretches. For a while I didn't believe it would help, but it has and I have regained about 85% movement.
I have found stretching exercises with resistance most beneficial maybe because it is lengthening the muscles that PD tries to continually shorten. I use a stretchy elasticatedband that is hooked around the post at the bottom of my stairs. Both single handedly and both together I stand in that 'titanic' pose leaning forward with arms behind me. This pulls shoulders back and stretches muscles. Then I turn 90 degrees and lean to the side away from the post. My arm is now bent behind my back and the lean increases the stretch to the bent arm. I cannot advise others to do this as this is just my experience, but under the advice of a physio I have, personally, found it very helpful.
I agree with others that lack of movement is bad. Getting out of bed is painful but it soon goes once I get moving. Little or no movement can cause stiffness, yet when I'm at work all day, I have no stiffness.
Funny you talk about Riverdance, my right leg who I call Elvis, just loves Riverdance, and has a great time when we go to the theatre to see it and left leg called Elsie also joins in, at least I don't look out of place there !