When to start the drugs?

[LynnT]

Hi everyone. I'm wondering if someone can give some advice/share some experiences about drugs (particularly dopamine agonists) for treatment in the early stages of PD - or, indeed, decisions made by their consultant to delay beginning medication.

I was diagnosed 2 months ago. At that point my consultant made the decision not to begin anti-p drugs because I am 'well'. We're reviewing formally in one year. My symptoms at the time of diagnosis were tremor in my arm and leg (which has been the dominant symptom over the past 3 years of 'essential tremor' fun), pain/discomfort in my shoulder, and an increasing awareness of stiffness. All my symptoms are currently still limited to one side, my left.

During the weeks leading up to my referral in December of last year, and during the following weeks when I had the brain scans etc, the stiffness/slowness of movement/loss of dexterity was masked somewhat by an old tendon problem that I have had for many years. I used to be a fairly serious guitar player and I developed tenosynovitis in my left wrist when I was in my 20s. This flared up in a major way in June of last year (caused by worsening pd symptoms??). If something hurts you don't move it do you?! It was only after the wrist really settled down that I began to realise the extent of weakening left hand dexterity and left arm movement. This was after my diagnosis with pd in Feb.

I am now finding (and I do realise that these are very minor problems compared to what many of you out there are facing every day, and I will face myself soon enough) that the stiffness has become rather worse making any vaguely prolonged use of the left arm (holding it in position to type this, driving, drying my hair, holding a book) pretty painful at times. And the stiffness is throughout the left side now too causing discomfort in my ankle, hip, back (wrist) and neck as well as the shoulder. Also, the tremor has migrated right down into the hand now ( I've been used to it 'living' in the large muscles of my arm and leg.) The stiffness is at its worst in the morning, improves with movement and exercise. Pain tends to worsen in the evening.

Basically what I would like to know is: are these symptoms considered unpleasant enough to begin drugs? I didn't question my consultant at the time of diagnosis. It's pretty good to hear that they don't think you need the drugs yet! And, anyway, the symptoms have become worse during the past 2 months. But I gather that not all neurologists would necessarily have made this decision even based on my situation 2 months ago. Some would have begun me on a dopamine agonist immediately, especially given my age (41: 'young-onset' - glad to be 'young' in some respects then!) Am I to assume that my neurologist is not convinced of the neuro-protective properties of dopamine agonists? Are these drugs expensive? God forbid some kind of postcode lottery?

Another major concern of my mine is my ability to hide my symptoms at work. I'm a primary school teacher. When the tremor first began the children noticed it, especially in my leg. A throwaway comment was enough to satisfy them. Now that it is merrily ticking away in my hand as well as my arm it is becoming much more difficult to hide.

Do any of you out there have any experience of the effectiveness of dopamine agonists? Have you found that they have reduced tremor as well as stiffness? If the stiffness is reduced do you think that this would reduce the pain/discomfort? Are there any musicians out there who have found that the drugs have given them maybe one or two years of continuing to play their instrument?

Or should I count my blessings and concentrate on the fact that I am 'well'?

Sorry this turned into such a long winded post! Look forward to reading any replies!

Thanks
LynnT

[suzie Q]

Hi LynnT

My name is Sue and i have had p.d 6 years i was 48 when i noticed the first major symptoms although looking back i would say i had it 7or 8 years previous. i started medication straight away as my symptoms were stoppping me working and having a good quality of life.Some doctors as yours has done delay the start of medication because of the fact that after 5 to 10 years on the medication your body gets used to it and the medication starts to cause problems, as well as the parkinson disease.

when i was diagnosed i was told i would have 5 to 10 good years and then the honeymoon would be over,and i must say that has proved to be just about accurate.The main problem with the medication for me is dyskenesia,which is extra movement.

It is really hard for anyone to say don't start, or do start medication,the choice is yours but if i did it all again yes i would start the medication ,because i froze ,had constant internal tremmors was stiff all over, most mornings my husband had to help me out of bed,it also affected my fine motor skills ,i play the piano and my fingers would not do as they were supposed to .Sometimes i was disorientated and very slow walking shuffling my feet no arm swing ...all the major symptoms ........i remember the first lot of meds i took and how wonderful i felt .i thought i had my life back again ...and i did , for a while. At the moment i am deciding if i need to have my meds adjusted and be given more it is a hard decision but i guess yes i will choose to have more as quality of life means a lot to me.As i say to my friends on the forum i dont expect to have this disease forever with the advances in research of p.d i feel that there is going to be a cure and we are the ones who are going to benefit from it.

Starting the drugs early helped me to do my Diploma in Children's Services, continue on playing the piano,and also to be able to work .it is a decision that only you can make .

I hope that this has helped you,i am so sorry that you have this but just remember there is life after p.d.i dont think that i would be the person i am now if i had never had pd .it has made me do things i never would have done without that diagnoses. ......Made me more determined ...i am not going to let it stop me doing anything that i would have done before being diagnosed .Hope to hear more from you it is a great place to be able to come and chat too others in similar circumstances as yourself.Everyone here understands what you are going through.i have made some wonderful friendships on here .


All the best

Sue

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/WelcomelynnT.gif
I'm Heather a carer for hubby Jim
who has a illness that mimics PD, and not on PD medication
so i don't feel the right person to give advice on medication
you will find lot's who can
hope you become a regular poster on hear, as all learn from each other, how to cope

[topfrog56]

Hi Lynn!
I was diagnosed with PD three years ago, at age 50. I had a faint tremor in my left hand, some stiffness and pain in my neck and arms and that was about it for significant symptoms at that point. I was blessed to have a Primary care Dr. who sent me right to a neurologist specializing in movement disorders. She is a young Dr. and the center where she practices does lots of studies and research, etc. I trust her guidance completely, but at the same time I trust myself and my "take" on my symptoms and how well or poorly I tolerate them.

I'm not keen on medication but PD is nothing to mess with and there are some really effective drugs available. The hard part is that from person to person the symptoms and the drug reactions vary so much that recommendations are hard to do! I started on Azilect about 6 months after my diagnosis. It does not treat symptoms (at least for me) but it is supposed to slow the early progress of the disease. About 6 months after that, I started on low dose of Mirapex and have had great results - this is a drug that has very bad side effects for many people, but so far,so good for me. I have noticed some weight gain despite my regimen of 30 minutes a day on my elliptical every morning and I have a tendency to become suddenly and inescapably sleepy if I am too still (during sermons at church - very embarrassing!!) but the upside is no more stiffness and reduced (not eliminated) tremor. I am having some hand pain and I am probably due to increase my Mirapex dosage - I have put it off as long as I can - I worry about those scary side effects popping up at an increased dose.

I guess the bottom line is this - you need to do what makes life comfortable and happy for YOU. I have found that the elimination of stress does as much for me as taking medication does and adequate rest is very important, too. How I felt before stepping away from my position as a preschool director and how I felt just weeks after retiring are a great example of how much it helps to de-stress and be rested and do that things you love to do.

I hope some of this helped. Having folks in the same boat to talk to is wonderful - I'm glad you joined us! I'm new to this forum, too and I have enjoyed reading what the others have contributed - there's a lot of love and support to be found here.

Elizabeth

[Gail]

Hi Lynne,

My name is Gail and I was diagnosed with PD 4 years ago. However, I began showing symptons 4 or 5 years earlier. I began taking Requip on the day I was diagnosed and have wondered since if I started it to soon. I felt so much better before I started on the medication. Since then, I have added sinement. When the doctor first suggested it, I was hesitant because of the side affects. However, in order to continue working I knew I had to take it. I was able to continue working for 3 more years because of the medication. It is a tough decision, but bottom line for me was quality of life and the need to continue working. Gail

[laseecan]

Good evening Lynn t, Suzie Q and Elizabeth

I am reading your stories with great interest and I am glad to see that you are all very positive. This is what keeps us going. I have been dx 18 yrs ago at age 40 after 2 yrs of symptoms. I was in denial for the first couple years and never told anyone at work. At the time I was working as a call center Director and was managing 60 people.That is the reason I started to take meds right away. Nobody new I had this dreadful disease. But I am glad I did because for the first 12 yrs I have not change anything in my lifestyle and during the day my symptoms where very well under control. I have been taking all the meds you can think of: artane, eldepryl, amantadine,sinemet reg & cr, mirapex, comtan and azilect. I can tell you that for me it worked very well and no side effects to all those. Unfortunately I had to stop working 3 1/2 yrs ago because I started to get more tremors, dyskenisia, rigidity, stiffness .... I stop because of exhaustion.
All this to tell you that you can still have many good quality years ahead of you. Live each day to the fullest. Do not worry for what tomorrow will bring. There are good days and bad days but staying positive is the key to beat this disease.Try to stay away from stress and do not let PD win this war.
My thoughts are with you all.

Laseecan :):)
[

[kellhug]

Good evening Lynn t, Suzie Q and Elizabeth

I am reading your stories with great interest and I am glad to see that you are all very positive. This is what keeps us going. I have been dx 18 yrs ago at age 40 after 2 yrs of symptoms. I was in denial for the first couple years and never told anyone at work. At the time I was working as a call center Director and was managing 60 people.That is the reason I started to take meds right away. Nobody new I had this dreadful disease. But I am glad I did because for the first 12 yrs I have not change anything in my lifestyle and during the day my symptoms where very well under control. I have been taking all the meds you can think of: artane, eldepryl, amantadine,sinemet reg & cr, mirapex, comtan and azilect. I can tell you that for me it worked very well and no side effects to all those. Unfortunately I had to stop working 3 1/2 yrs ago because I started to get more tremors, dyskenisia, rigidity, stiffness .... I stop because of exhaustion.
All this to tell you that you can still have many good quality years ahead of you. Live each day to the fullest. Do not worry for what tomorrow will bring. There are good days and bad days but staying positive is the key to beat this disease.Try to stay away from stress and do not let PD win this war.
My thoughts are with you all.

Laseecan :):)
[

Hello everyone, I am Kelly. I have introduced myself before and appreciate the responses I have gotten. Your story is very inspirational Laseecan as I am newly diagnosed at 41. As I have mentioned, I am a new mother (for the first time - my little boy is now 1 year). My biggest fear is not being able to lead a normal life watching him grow up. Not being able to play with him or do the things I would normally do. I know people say you adjust and you can't think of the future like that. But this is sooooooo hard for me as I have always been such a healthy person. How long into PD did you really start to have problems? I understand everyone is different, I just want to know I am going to be ok. It has only been 4 weeks since I was told I have PD, but it seems like a lifetime already. I haven't worked in 4 years (have been traveling with my husband), but I had planned on going back to work before I was diagnosed as we need the $. I don't think I have to tell anyone I interview with I have this. I think this forum is going to help me as I need to talk about things related to PD others in my life don't understand.

Hope to be in a lot of contact with you all

[kellhug]

Hi everyone. I'm wondering if someone can give some advice/share some experiences about drugs (particularly dopamine agonists) for treatment in the early stages of PD - or, indeed, decisions made by their consultant to delay beginning medication.

I was diagnosed 2 months ago. At that point my consultant made the decision not to begin anti-p drugs because I am 'well'. We're reviewing formally in one year. My symptoms at the time of diagnosis were tremor in my arm and leg (which has been the dominant symptom over the past 3 years of 'essential tremor' fun), pain/discomfort in my shoulder, and an increasing awareness of stiffness. All my symptoms are currently still limited to one side, my left.

During the weeks leading up to my referral in December of last year, and during the following weeks when I had the brain scans etc, the stiffness/slowness of movement/loss of dexterity was masked somewhat by an old tendon problem that I have had for many years. I used to be a fairly serious guitar player and I developed tenosynovitis in my left wrist when I was in my 20s. This flared up in a major way in June of last year (caused by worsening pd symptoms??). If something hurts you don't move it do you?! It was only after the wrist really settled down that I began to realise the extent of weakening left hand dexterity and left arm movement. This was after my diagnosis with pd in Feb.

I am now finding (and I do realise that these are very minor problems compared to what many of you out there are facing every day, and I will face myself soon enough) that the stiffness has become rather worse making any vaguely prolonged use of the left arm (holding it in position to type this, driving, drying my hair, holding a book) pretty painful at times. And the stiffness is throughout the left side now too causing discomfort in my ankle, hip, back (wrist) and neck as well as the shoulder. Also, the tremor has migrated right down into the hand now ( I've been used to it 'living' in the large muscles of my arm and leg.) The stiffness is at its worst in the morning, improves with movement and exercise. Pain tends to worsen in the evening.

Basically what I would like to know is: are these symptoms considered unpleasant enough to begin drugs? I didn't question my consultant at the time of diagnosis. It's pretty good to hear that they don't think you need the drugs yet! And, anyway, the symptoms have become worse during the past 2 months. But I gather that not all neurologists would necessarily have made this decision even based on my situation 2 months ago. Some would have begun me on a dopamine agonist immediately, especially given my age (41: 'young-onset' - glad to be 'young' in some respects then!) Am I to assume that my neurologist is not convinced of the neuro-protective properties of dopamine agonists? Are these drugs expensive? God forbid some kind of postcode lottery?

Another major concern of my mine is my ability to hide my symptoms at work. I'm a primary school teacher. When the tremor first began the children noticed it, especially in my leg. A throwaway comment was enough to satisfy them. Now that it is merrily ticking away in my hand as well as my arm it is becoming much more difficult to hide.

Do any of you out there have any experience of the effectiveness of dopamine agonists? Have you found that they have reduced tremor as well as stiffness? If the stiffness is reduced do you think that this would reduce the pain/discomfort? Are there any musicians out there who have found that the drugs have given them maybe one or two years of continuing to play their instrument?

Or should I count my blessings and concentrate on the fact that I am 'well'?

Sorry this turned into such a long winded post! Look forward to reading any replies!

Thanks
LynnT

Hi Lynn,

I just responded before. I wanted to post another response to your questions directly. I am 41 and have been newly diagnosed. I have had symptoms for over 8 months now (tremors in my right hand, pain - sometimes extreme, always constant - in my right shoulder/arm/hand, and now going over to my left arm/hand, the tone/stiffness problem mainly on my right side). It wasn't until after numerous tests and neck surgery (I had a bulged disc they thought may be causing all of these problems), that they said it was something more serious....PD. I knew, I knew a long time ago it was something bad. I have played the piano all of my life. Right before I was diagnosed, I sat down to play one day and could not move my right fingers (nor could I type). Right after my diag. they put me on Mirapex. Although i am only a few weeks into it(and just now starting out on full dosage) and I have had some bad side effects, the one good thing I have noticed with it is that I can play the piano again. It is still a little painful to move my fingers, but I can play. I too am considered young-onset, but my doctor didn't hesitate about starting me on meds. The way I understood it is that things weren't going to get any better (just worse) and I need to get these symptoms under control and the only way to do that was with the medication. I am curious as to if you had a brain MRI and if you did, did anything show up on it? My brain MRI was normal, but my neurologist said with patients that are young-onset, nothing will probably appear until later.

[heather]

Hello everyone, I am Kelly. I have introduced myself before and appreciate the responses I have gotten. Your story is very inspirational Laseecan as I am newly diagnosed at 41. As I have mentioned, I am a new mother (for the first time - my little boy is now 1 year). My biggest fear is not being able to lead a normal life watching him grow up. Not being able to play with him or do the things I would normally do. I know people say you adjust and you can't think of the future like that. But this is sooooooo hard for me as I have always been such a healthy person. How long into PD did you really start to have problems? I understand everyone is different, I just want to know I am going to be ok. It has only been 4 weeks since I was told I have PD, but it seems like a lifetime already. I haven't worked in 4 years (have been traveling with my husband), but I had planned on going back to work before I was diagnosed as we need the $. I don't think I have to tell anyone I interview with I have this. I think this forum is going to help me as I need to talk about things related to PD others in my life don't understand.

Hope to be in a lot of contact with you all

Dearest kellhug
You will be "OK" just give yourself time to adjust and except things, just try and stay positive, and stress free.

my hubby Jim has a illness that mimics PD for over 12 years,at the age of 54 years, and PD medication doesn't work, so i don't feel i am the person to talk about medication, there are many many more caring people on hear who have the knowledge, and experience to help you.
I do understand you worries and yes fears my friend, this is called being a loving caring human being

When my oldest grandson was born, Jim had been poorly for over 2 years, and like you had started to notice some changes, then 3 years later came our second grandson, Jim could still do most, but a little "wobbly" so he got the name wobbly taide [Welsh for granddad], then 5 years ago, our youngest, by his arrival Jim had slowed down and needed more care, we have the youngest one Monday to Friday, you would not believe how he coped, all he wanted to do was help, so i let him, and from then on we have never looked back, the 3 are our strength, hopes and dreams just as your family will be, we have all adjusted, and treat him as Taide,not some fragile object.

What I'm trying to say is, don't worry about your son, you will always be his mum, he will be your strength, hopes and dreams, just treat each other as normal and PD just a unwanted visitor, be normal. For want of a better word, your son being so young will cope well making it much easier for you all, My oldest grandson, does still talks about Jim when he was well, to the other 2, and my middle one remembers somethings, but my youngest knows Jim no different than what he is know, and so treat's him at the level he knows Taide can cope, and has adjust/ copes better than any of us

http://i10.photobucket.com/albums/a126/maesisaf/friend3831.gif
http://i10.photobucket.com/albums/a126/maesisaf/hugs14.gif

[ltd-addition]

Lynn T

HELLO pet, how you doing ?

Never fear there's another Geordie Here.

Yes Im from Tyne and Wear.

I'm 46yrs diagnosed 7 . 4 yrs still working and am full of mischief !

"Don't worry" is like saying "Stop breathing "

I can't say anything to you that will make you feel better overnight but what I can do is meet up with you, or talk to you via telephone, web cam or voice cam if you want too

I'm here pet and all I can tell you is that all of us with Parker's are too blinkin nosey for our own good !

We were obviously standing too close to God when he was dishing out P.D. and since we were ear wigging we heard him say he was going to give it to someone we knew.

Now, since we knew who that person was, we knew they couldn't cope. So us being us chose to take it instead, because we knew we were stronger.

So it's our own fault for being too nosey and having good hearing ! eh what? , not sure what you said, but a coffee would be good. Milk 1 sugar and get the waiter to bring it over, cos I fancy a full cup !

What i'm trying to say pet, is that at least we are alive and kickin, so howay lass, get a had and i'll tell yer boot a likely story ! Make the best of it , cos clocks don't reverse in my house, but i do know how to slow it down or stop it for a while, by taking the batteries out!!

Here and i'm ever ready ! which if you know the history is an indication of my home town.

Nice to say Hi hun so you keep safe and just shout when you want to talk.

i'm like a martini any time any place anywhere

[laseecan]

Good evening kellhug

Laseecan here from Canada. I am sure that you will be fine as soon as you accept this dreadful disease. You know when I was told in 1991 I was divorced and living alone with my daughter(then 11) and had just moved back to Ottawa from 200 miles away. I was a Director of a call center and had 60
employees under me. Like I said b/4, I was devastated when the Doctor told me I had PD. Actually it took a year for me to have an apointment with a neurologist after starting to have a twitch in my left hand and tremors in my leg. At the first apt. with him I was told that it was'nt PD but 6 mos later it was confirmed. I was in denial for about 2 years and never told my employer or employee for 2 yrs at the exception of my best friend. Fortunately PD progressed very slowly and since my condition was pretty well under control I had no problems for the first 12 yrs. By that time I was taking care of my mother that is now in a residence, paralized and for the last 4 yrs , we go (my brother and I) everyday to give her supper. At the same time I was taking care of my father for Dr apts, shopping, banking. etc until last August when he passed on,
So because of all the stress that I had in the last years I had to quit working 4 years ago of exhaustion. Now PD is progressing a bit faster but I know that my neurologist is the best in the area and he will keep finding me the best med to get me going for a while yet.
Also, there is not only negative things that happened to me. Eventually, I met this wonderful guy that wanted to take care of me even after telling him before we even met that I had PD. Being very independent I did not want to be a burden to anyone and did not think at that time that I could have a new relationship but I was pleasantly surprised when he told me that he was in excellent health and that he wanted to take care of me for the rest of his life. That was 10 1/2 years ago.
I have not done groceries, cleaning, cooking in 10 years. Do
you believe that! Well I do a bit but..... So just to say that you still have many many good years ahead and yes you will see your son grow-up... you are still young and the key to this is to be positive and do not worry about what tomorrow will be. Live for the present and enjoy all the best in your life. Live your dreams and I assure you that PD is going to stay back...don't let it win this fight You are strong and you will win!!!
Sorry to have been so long and please forgive my english since I am french. I never speak about me so much... take care
laseecan

[harding51]

I was diagnosed in October 2007 at the age of 51. The only meds I take is a xanex a day to calm my tremors. I am a bookkeeper/billing clerk and luckily I use the number pad on my keyboard because my left hand has slowed down so much that I overcompensate with my right. My doctor has been trying really hard to get me to take azelect but I do not want to. There are too many side affects from all of them and I don't want to deal with that too as then you have to take more and more when they stop working. I'll take my chances.

[kellhug]

Good evening kellhug

Laseecan here from Canada. I am sure that you will be fine as soon as you accept this dreadful disease. You know when I was told in 1991 I was divorced and living alone with my daughter(then 11) and had just moved back to Ottawa from 200 miles away. I was a Director of a call center and had 60
employees under me. Like I said b/4, I was devastated when the Doctor told me I had PD. Actually it took a year for me to have an apointment with a neurologist after starting to have a twitch in my left hand and tremors in my leg. At the first apt. with him I was told that it was'nt PD but 6 mos later it was confirmed. I was in denial for about 2 years and never told my employer or employee for 2 yrs at the exception of my best friend. Fortunately PD progressed very slowly and since my condition was pretty well under control I had no problems for the first 12 yrs. By that time I was taking care of my mother that is now in a residence, paralized and for the last 4 yrs , we go (my brother and I) everyday to give her supper. At the same time I was taking care of my father for Dr apts, shopping, banking. etc until last August when he passed on,
So because of all the stress that I had in the last years I had to quit working 4 years ago of exhaustion. Now PD is progressing a bit faster but I know that my neurologist is the best in the area and he will keep finding me the best med to get me going for a while yet.
Also, there is not only negative things that happened to me. Eventually, I met this wonderful guy that wanted to take care of me even after telling him before we even met that I had PD. Being very independent I did not want to be a burden to anyone and did not think at that time that I could have a new relationship but I was pleasantly surprised when he told me that he was in excellent health and that he wanted to take care of me for the rest of his life. That was 10 1/2 years ago.
I have not done groceries, cleaning, cooking in 10 years. Do
you believe that! Well I do a bit but..... So just to say that you still have many many good years ahead and yes you will see your son grow-up... you are still young and the key to this is to be positive and do not worry about what tomorrow will be. Live for the present and enjoy all the best in your life. Live your dreams and I assure you that PD is going to stay back...don't let it win this fight You are strong and you will win!!!
Sorry to have been so long and please forgive my english since I am french. I never speak about me so much... take care
laseecan

Hi Laseecan
Thanks for the reply. Your story is so inspirational. I am from South Carolina, but lived up in New Market Canada for over 2 years (first husband is from there). We visited Ottawa several times and I thought it was beautiful. I loved living in Canada.......there is something to be said about the healthcare too. I miss it so much some times. Anyway, I would like to keep in touch as I have so many questions about what I am going through. It feels so much better to have someone to communicate to that has gone through what you are going through. As I wrote in the beginning, I have just been diagnosed now about 6 weeks ago. I believe the onset of PD began last July (almost a year ago), however. I am taking a low dosage of medicine right now; .5 mg of Mirapex 3x day. I have only been on that full dosage for about 2 weeks (worked myself up to it). Unfortunately I have had bad side effects - which I expected b/c I never take medicine well. They put me on Tigan (I take it before I take the Mirapex). That helps with the nausea. My symptoms before the meds. were a tremor in my right hand, pain in my right shoulder/arm/hand and could not move my right fingers. Everyone of those symptoms have indeed improved a little (mainly being able to move my fingers). Now, however just in the past couple of days I have this new symptom that has been the worse yet. I am having muscle spasms (not so much cramps, just the spasms) in my inner feet. You can look at them and see they are pulsing. They are constant, severe and very painful. I called my doctor and he said they may need to increase my meds. Just the other day when I saw the doctor, he was saying how it was good I was doing well and on a mild dose of medicine. My question is this, could there be something else I could do (like take supplements) before actually increasing my meds. I am nervous about that as I am still having bad side effects from this dose. I wrote to someone on another pd website and she said they may have me on too much medication and that I might be having dyskensias. I thought I was on very little meds. I am hearing different things (I guess I should actually be listening to my doctor, I just don't want to increase med). I know you said you did well at first, but I wanted to find out if you ever had muscle spasms in your feet and what you did about it. It is by far the worst symptom I have had. Sorry this is long, I look forward to hearing from you.

[Christine]

This is my first posting on this forum.
I've been going through a diagnosis process since February and the neurologist is still calling my tremors Parkinsonism.
She put me on Azilect 3 weeks ago to help the tremors, delay the progress of Parkinson's and make me feel better. She didn't mention that Azilect interacts with tyramine in certain foods and I must avoid them. I have been trying to find out a list of foods to avoid from my GP, pharmacist and websites. Every place I go extends the list of foods I can't have. I am waiting to see a dietitian who might help. I also have Celiac Disease and have been adhering to a strict gluten free diet for 11 years now. Now I add the tyramine restricted diet, my life has become stressful and complicated. If I go out to eat I don't know what to order. I fear none of our friends will invite us out for fear of giving me the wrong thing.
Is anyone else dealing with this?
Christine

[suzie Q]

Hi Christine welcome to the forum.

The only food that i have heard that is not good with the levedopa is protein as too much makes meds not as effective.Hope this helps

Sue

[Juanita Mullin]

And the protein not excluded, but restricted at certain times of the day, I believe. ?????????:confused: Juanita

[LynnT]

Hi Lynn,

I just responded before. I wanted to post another response to your questions directly. I am 41 and have been newly diagnosed. I have had symptoms for over 8 months now (tremors in my right hand, pain - sometimes extreme, always constant - in my right shoulder/arm/hand, and now going over to my left arm/hand, the tone/stiffness problem mainly on my right side). It wasn't until after numerous tests and neck surgery (I had a bulged disc they thought may be causing all of these problems), that they said it was something more serious....PD. I knew, I knew a long time ago it was something bad. I have played the piano all of my life. Right before I was diagnosed, I sat down to play one day and could not move my right fingers (nor could I type). Right after my diag. they put me on Mirapex. Although i am only a few weeks into it(and just now starting out on full dosage) and I have had some bad side effects, the one good thing I have noticed with it is that I can play the piano again. It is still a little painful to move my fingers, but I can play. I too am considered young-onset, but my doctor didn't hesitate about starting me on meds. The way I understood it is that things weren't going to get any better (just worse) and I need to get these symptoms under control and the only way to do that was with the medication. I am curious as to if you had a brain MRI and if you did, did anything show up on it? My brain MRI was normal, but my neurologist said with patients that are young-onset, nothing will probably appear until later.

HI Kelly. Thanks for replying to my post. I'm so glad that you can still play the piano a little. It must have been a terrible shock to sit down at the piano one day and have such an experience. I still have some control over my finger movements but I can't keep my arm raised to play my guitar - the shoulder and arm just scream bloody murder! Piano playing is out for me - the left hand and arm just won't do what I want.

About the MRI. Yes I did have one, and like yours, it was perfectly normal. I gather that this is to be expected in pd - if I understand this rightly its other problems that show up on an MRI (?). I certainly thought I was due some sort of 'normal' result, didn't you?!!

Best wishes
Lynn

[LynnT]

Lynn T

HELLO pet, how you doing ?

Never fear there's another Geordie Here.

Yes Im from Tyne and Wear.

I'm 46yrs diagnosed 7 . 4 yrs still working and am full of mischief !

"Don't worry" is like saying "Stop breathing "

I can't say anything to you that will make you feel better overnight but what I can do is meet up with you, or talk to you via telephone, web cam or voice cam if you want too

I'm here pet and all I can tell you is that all of us with Parker's are too blinkin nosey for our own good !

We were obviously standing too close to God when he was dishing out P.D. and since we were ear wigging we heard him say he was going to give it to someone we knew.

Now, since we knew who that person was, we knew they couldn't cope. So us being us chose to take it instead, because we knew we were stronger.

So it's our own fault for being too nosey and having good hearing ! eh what? , not sure what you said, but a coffee would be good. Milk 1 sugar and get the waiter to bring it over, cos I fancy a full cup !

What i'm trying to say pet, is that at least we are alive and kickin, so howay lass, get a had and i'll tell yer boot a likely story ! Make the best of it , cos clocks don't reverse in my house, but i do know how to slow it down or stop it for a while, by taking the batteries out!!

Here and i'm ever ready ! which if you know the history is an indication of my home town.

Nice to say Hi hun so you keep safe and just shout when you want to talk.

i'm like a martini any time any place anywhere

Hiya me fellow Geordie lass!

Thanks so much for your post. I love your positive attitude and great sense of humour Mrs! Just might take you up on your offer some time pet!

Lots of love
LynnT

[LynnT]

I was diagnosed in October 2007 at the age of 51. The only meds I take is a xanex a day to calm my tremors. I am a bookkeeper/billing clerk and luckily I use the number pad on my keyboard because my left hand has slowed down so much that I overcompensate with my right. My doctor has been trying really hard to get me to take azelect but I do not want to. There are too many side affects from all of them and I don't want to deal with that too as then you have to take more and more when they stop working. I'll take my chances.

Hi there. I really wanted to reply to your post because I angonised over whether to begin medication too, which is why I sought advice from the forum. I was diagnosed in February of this year after three years of tremor in my left side. Initially my consultant decided against drugs because my symptoms were relatively mild. Since then my symptoms have become more visible and more uncomfortable so I have now begun Rasagiline (Azilect). Aside from an occasional headache I have not experienced any of the unending list of possible side effects. The drug has not improved my tremor or my pain. And I'm going to be entirely honest with you: if anything, my tremor is actually rather worse. (Just in case you suspect that I moonlight as a rep for a pharmaceutical co...) I've been taking the drug now for almost three weeks. For some people the drug apparently takes effect in as little as one week; for others it may take a month or longer. Recent research is beginning to show that the drug may slow down the progression of pd in the early stages. So I intend to stick with it for at least another month. My point is that if you reach the point where you feel you must begin the drugs don't panic. Not everyone experiences the side effects. Azilect might in fact work wonders for you - it does for many people.

Anyway, I wish you well...and would also like to thank everyone else who has replied to my original post. This forum is a great source of comfort and inspiration.

LynnT

[LynnT]

This is my first posting on this forum.
I've been going through a diagnosis process since February and the neurologist is still calling my tremors Parkinsonism.
She put me on Azilect 3 weeks ago to help the tremors, delay the progress of Parkinson's and make me feel better. She didn't mention that Azilect interacts with tyramine in certain foods and I must avoid them. I have been trying to find out a list of foods to avoid from my GP, pharmacist and websites. Every place I go extends the list of foods I can't have. I am waiting to see a dietitian who might help. I also have Celiac Disease and have been adhering to a strict gluten free diet for 11 years now. Now I add the tyramine restricted diet, my life has become stressful and complicated. If I go out to eat I don't know what to order. I fear none of our friends will invite us out for fear of giving me the wrong thing.
Is anyone else dealing with this?
Christine

Hi Christine.

My consultant did not warn me about tyramine either. I discovered this problem after I had begun taking the Azilect. I've asked him about possible problems and his advice is that major problems with tyramine really only apply to the older generation of MAO inhibitors (the family of drugs to which Azilect belongs). He advised me to eat these foods only in moderation, but not to be too concerned. My problem is that I'm a vegetarian - and cheese and soya are on the no-go list. So although in general I am avoiding aged foods - because I really want this drug to work! - I don't think the occasional glass of wine or meal which includes cheese will do any harm. Hope this helps.

LynnT

[laseecan]

Good evening Kellhug, how are you doing?? Is your Mirapex working better now... I remember that when I started the Mirapex (about 12 yrs ago) I also had cramps and spasms in my inner feet and legs. I was then on 6 x day of .25 mg but eventually my neuro changed it to 3 x day .50 mg.... All along these years I have taken different variations of meds. For me as you know I was pretty well controlled for the first 12 yrs. It takes me 4 to 6 months to see any changes but I very seldom have side effects... may be discomfort or unpleasant sensation for 2-3 wks but it gets better. What works for me is to take my meds 15-30 minutes before my meals. Hope you are doing better. Keep your positive attitude and you will be just fine.
Talk to you later. Laseecan