Thank you J of Grey Cottage - your comments keep me going - perhaps one day I will not think of it every minute of the day
Hmm . . . another interesting statement: "Perhaps one day I will not think of it every minute of the day." Yes, that day will come. I remember wondering when I was new to PD whether my thoughts would ever be free again, unburdened by the constant weight of my horrible progressive disease. Looking back, I'm not sure when or why, but I did stop thinking of it each minute. As time goes on, there is still an everyday awareness of it, but it is subconscious most of the time and, even when conscious, seems somehow familiar and more comfortable rather than alarming. At first, years ago, every time PD crossed my mind, I felt a pang of fear or anxiety. Now even when I am planning for the time when I can no longer live independently, I never feel those pangs of panic -- a kind of sadness, yes, but not anxiety.
Sorry to go on at such length. I think I'm constitutionally incapable of writing a short message! Maybe it's an after-effect of teaching English so many years.
Sorry to go on at such length. I think I'm constitutionally incapable of writing a short message! Maybe it's an after-effect of teaching English so many years.
''feel pang of fear or anxiety'' ... this sums up exactly how I feel - cannot see a time when I will ever be able to laugh easily again ... I cannot believe I have got to flounder for 3 months before I get my next 10 min appt and the results of my dat scan. my surgery does not have a pd nurse and when i voiced my fear over taking the meds, particularly before my daughters wedding at the end of the month, my gp said don't take them until afterwards as they will give you rigidity! I though these were supposed to help. Also have been told meds make you worse before making you better ... is this true
moonandstars, no wonder you're filled with anxiety! Rigidity from the meds? Not in my experience, but what meds are we talking about? I have experience with only four: Amantadine, Mirapex (Pramipexole), Azilect (Rasagiline), and Carbidopa/Levodopa (Sinemet). Mirapex helped relieve the slight stiffness in my right arm and hand. I think the small dose of Sinemet that I take is also helping to keep my joints limber. And I have had NO serious side-effects from any of the four.
On this forum, I see references to meds I've never heard of here in the U.S. Maybe your doctor is thinking of prescribing something unknown to me. I don't remember if you have revealed your location or meds prescribed in previous posts. I'll reread them. Send a personal post if you wish.
On this forum, I see references to meds I've never heard of here in the U.S. Maybe your doctor is thinking of prescribing something unknown to me. I don't remember if you have revealed your location or meds prescribed in previous posts. I'll reread them. Send a personal post if you wish.
Hi Moon and stars,
Your first post echoes my experience of dx. No info. at all, just the actual name of the local Parkinsons Nurse and as I had never heard the name I had to guess what I was supposed to do with it. The PD nurse was supposed to contact me but that didn't happen for several months by which time I had sorted myself out mentally. I was given the option of starting meds. or not which was something individualised I suppose. The first letter to my GP was headed up as "probable" idiosyncratic (means no known cause) Parkinsons. After the second flying visit to the neuro the letter from the neuro to the GP had dropped the "probable" so reading between the lines I deduced the dx was confirmed. You may have been asked to take some meds. as part of the clinical diagnosis. If the meds alleviate the symptoms PD is the most probable cause taking other clinical observations into account. The DAT scan doesn't so much confirm PD as rule out other explanations for the symptoms. I have been told that even other consultants find nueros. can be a bit arrogant. Like the nursery rhyme says "when they are nice, they are very very nice but when they are bad they are horrid"
Just two points to add to what has already been said.
1) The UK Parkinson's nurses are not attached to surgeries as are diabetes nurses (much lower incidence of PD) but are employed by the local NHS authority but not every area has them. They are often paid for by PD UK initially to persuade the local NHS of their usefulness The helpline top of this page should be able to tell you whether there is a parkinsons nurse in your locality.
2) Most GP's would acknowledge that they have little experience/knowledge of PD and the mystifying remark about meds.increasing stiffness could be related to an isolated/anecdotal incident involving patient receiving way too much meds.which is highly unlikely just after dx. as you usually start low and creep up gradually until the symptoms are relieved.
Best wishes
Your first post echoes my experience of dx. No info. at all, just the actual name of the local Parkinsons Nurse and as I had never heard the name I had to guess what I was supposed to do with it. The PD nurse was supposed to contact me but that didn't happen for several months by which time I had sorted myself out mentally. I was given the option of starting meds. or not which was something individualised I suppose. The first letter to my GP was headed up as "probable" idiosyncratic (means no known cause) Parkinsons. After the second flying visit to the neuro the letter from the neuro to the GP had dropped the "probable" so reading between the lines I deduced the dx was confirmed. You may have been asked to take some meds. as part of the clinical diagnosis. If the meds alleviate the symptoms PD is the most probable cause taking other clinical observations into account. The DAT scan doesn't so much confirm PD as rule out other explanations for the symptoms. I have been told that even other consultants find nueros. can be a bit arrogant. Like the nursery rhyme says "when they are nice, they are very very nice but when they are bad they are horrid"
Just two points to add to what has already been said.
1) The UK Parkinson's nurses are not attached to surgeries as are diabetes nurses (much lower incidence of PD) but are employed by the local NHS authority but not every area has them. They are often paid for by PD UK initially to persuade the local NHS of their usefulness The helpline top of this page should be able to tell you whether there is a parkinsons nurse in your locality.
2) Most GP's would acknowledge that they have little experience/knowledge of PD and the mystifying remark about meds.increasing stiffness could be related to an isolated/anecdotal incident involving patient receiving way too much meds.which is highly unlikely just after dx. as you usually start low and creep up gradually until the symptoms are relieved.
Best wishes
Hi J of Grey
I notice you have had PD for 15 years diagnosed 10 and take a dose of Mirapexin well over the recommended dose.
Just the same as me.
Except you suffer no side effects, which is good to hear.
You also mention you suffer from very few symptoms of PD whilst on your medication.
Does that mean that when you wear off ie the drugs dont work and you feel the full effect of PD the symptoms you have progressed little in terms of how you where at 15 years and at diagnosis.
I am interested because it would seem to indicate neuroprotective qualities due to the high dosage of mirapexin.
regards
Leyther
I notice you have had PD for 15 years diagnosed 10 and take a dose of Mirapexin well over the recommended dose.
Just the same as me.
Except you suffer no side effects, which is good to hear.
You also mention you suffer from very few symptoms of PD whilst on your medication.
Does that mean that when you wear off ie the drugs dont work and you feel the full effect of PD the symptoms you have progressed little in terms of how you where at 15 years and at diagnosis.
I am interested because it would seem to indicate neuroprotective qualities due to the high dosage of mirapexin.
regards
Leyther
hi J of Grey - would send a personal message, but my email address reveals my full name and place of work and as my family don't yet know of my dx yet i cannot take any chances suffice to say i am from maidstone area. my meds i haven't started are 1mg ragasiline - have no idea whether this will help for the wedding or make me worse so am holding off.
First, an answer to Leyther --
My dosage of Mirapex was increased over the past ten years as symptoms emerged. The dosage of 6 mg. per day is not considered higher than recommended in the U.S. From others in the forum I have gathered that doses are more conservative in the UK. Some days I skip one pill, making my dosage only 4.5 mg.
In regard to the wearing off of meds, I can hardly tell. I usually take them every four hours. If I do detect decreasing effectiveness, I feel it in my feet. They start to feel heavy and make me feel that my walk is clumsy. I have asked people if they can see a difference in my walk; everyone says not, but I definitely feel it. When I get up in the morning, having had no meds for about 10 hours, I may have a slight tremor in the right hand, usually not. So I delay meds until 8:00.
I do not know about residual effects of Mirapex. I can only hope the heavy dosage has no repercussions down the line.
Second, an answer to moonandstars,
I understand your need for absolute privacy. I was curious about whether you were in England because of your comments on the rather abrupt and not very compassionate treatment of patients. I did not have pleasant experiences with neurologists in this country either. It was when I went to a clinic for PD and movement disorders that I really began receiving good care. It seems that where the research is being done, the professionals show more understanding and concern for their patients.
My dosage of Mirapex was increased over the past ten years as symptoms emerged. The dosage of 6 mg. per day is not considered higher than recommended in the U.S. From others in the forum I have gathered that doses are more conservative in the UK. Some days I skip one pill, making my dosage only 4.5 mg.
In regard to the wearing off of meds, I can hardly tell. I usually take them every four hours. If I do detect decreasing effectiveness, I feel it in my feet. They start to feel heavy and make me feel that my walk is clumsy. I have asked people if they can see a difference in my walk; everyone says not, but I definitely feel it. When I get up in the morning, having had no meds for about 10 hours, I may have a slight tremor in the right hand, usually not. So I delay meds until 8:00.
I do not know about residual effects of Mirapex. I can only hope the heavy dosage has no repercussions down the line.
Second, an answer to moonandstars,
I understand your need for absolute privacy. I was curious about whether you were in England because of your comments on the rather abrupt and not very compassionate treatment of patients. I did not have pleasant experiences with neurologists in this country either. It was when I went to a clinic for PD and movement disorders that I really began receiving good care. It seems that where the research is being done, the professionals show more understanding and concern for their patients.
http://www.sciencedaily.com/releases/2009/09/090923173950.htm
This article about Risagiline may be of interest to you, MoonandStars
This article about Risagiline may be of interest to you, MoonandStars
Hello newly diagnosed:
It is unconscionable that you were 'treated' so poorly by your MD. I urge you to go to the US National Parkinson's Foundation website and look through their professional Q/A forums: the 'Ask the Pharmacist' forum is terrific, the pharmacist has himself got PD since age 29 and it's the best info I've rec'd to date. They also have a Q/A for a motion disorder neurology specialist, a nutritionist, etc., all very informative. Also join 'PatientsLikeMe', another US website, started by MIT computer engineers to change and improve the lives of patients like you and me. You need some basic information that you can trust so that you can start to manage your condition and manage your doctors as well - I cant believe they get paid so much for doing so little (I am a Canadian and we pay our doctors more than any other developed nation, which is, I guess, why I hear so many Brit and European accents over here in our doctors' offices).
It is unconscionable that you were 'treated' so poorly by your MD. I urge you to go to the US National Parkinson's Foundation website and look through their professional Q/A forums: the 'Ask the Pharmacist' forum is terrific, the pharmacist has himself got PD since age 29 and it's the best info I've rec'd to date. They also have a Q/A for a motion disorder neurology specialist, a nutritionist, etc., all very informative. Also join 'PatientsLikeMe', another US website, started by MIT computer engineers to change and improve the lives of patients like you and me. You need some basic information that you can trust so that you can start to manage your condition and manage your doctors as well - I cant believe they get paid so much for doing so little (I am a Canadian and we pay our doctors more than any other developed nation, which is, I guess, why I hear so many Brit and European accents over here in our doctors' offices).
Hi me too just found out last week ,I feel like iv just been left to get on with it ,take they pills and come bk in too weeks , but am a strong person and I won't let it get me down ,good luck x
Hi folks, I'm new to the forum so still finding my way around. Reading some of the posts about diagnosis took me back to some pretty dark times. My diagnosis was 10th May 2003, not a good time! Have to say that life does get easier, never give up. Talk to people, most will want to help.