Dear Dr. Soania,
My wife had medical issues and she got the best possible medical care all with welcoming smiles and good jokes breaking any possible human barriers.
That is what I expected from Canadian health system and I am sure that my experience was an isolated case.
Apart from the dry behaviour and disregard to the patient psychological state, as per my honest account of it, my professor Doctor was entitled to her assessment and prescription.
My criticism is not directed towards the Canadian system but towards the modern present medical practice world wide.
How else can I explain the professor objective assessment of my case as a rather severe and excessively under medicated with my own feeling of satisfaction and general well being? Scientifically I must be under self induced placebo or self delusion which is keeping my mobility, balance, stiffness, etc. in a good state (this placebo effect is not powerful enough to overcome my tremor unfortunately!).
I am willing to accept blindly a medicine if it assumed to cure my illness but all parkinson's medication only aims to make the patient feel better.
For this reason, I think that I have the right and obligation to argue with the professor. I think I need to keep my good spirit up while finding a way arround the SYSTEM. Thank you all for your suggestions.

What about going to the Movement Disorder Clinic at the Glenrose in Edmonton? You're actually closer than I am - i drive 300 miles from near Grande Prairie to see Dr. Martin. I wouldn't say he's the greatest MDS ever but he's okay for me, and there are three others there you could see.

I think it would be insane to start on nine 100/25 Sinemet a day. That's an awful lot of levodopa. And if you're feeling like your life is good and you're doing fine, I sure wouldn't let an ignorant dr. bully me into taking something I don't need that could have serious side effects later. We have to remember that somebody had to be the last in their medical class! Or neuro residency year!

Excellent advice Wendy!
Also we need to be captain of our own ships, if you think you feel you're doing well then you are doing well. From no levodopa to 9 a day!! Just doesn't make sense.

agree wholeheartedly! thanks folks!

To give you an idea of what we mean, i think, i'll say "i've been trying to get back to as close to a 1000mg of levodopa a day as possible and still be on. You have to work at it but I'm pretty happy and convinced that it ain't over till we let it be.

Imad you are right. Just fill the prescription; but you are titrating up from very low right? You will know when you feel maximum benefit and don't have to take all of them if you feel great on 4? It's up to you to decide now. It's not an agonist, but you could start as low as 1/2 twice a day - low dose. Just thoughts that come to mind. Good luck and please let us know what you think of sinemet/levodopa should you decide to take it.

it's a tough decision.


paula

Thank you all and I must clarify in fairness that the neuro doctor laid a plan starting with 1/2 tab of sinemet 25/100 increasing gradually within about 6 weeks to the large dose of 9 tablets a day.

As I mentioned earlier (subjectively) I do not have any complain about mobility, stiffness, getting up, turning in bed, swallowing, constipation, mood, sleep and (I say it in a shy way) even my sex life is fine at my age which is 67. My main complain is tremor during activity such as eating, typing, shaving, etc. as well as deteriorating memory (specially short term) , finding direction and speech. I rarely have tremor when I am relaxed and not stressed.
Of course I have beside tremor all the other symptoms to some degree but they do not bother me at all because they are mild and I can live with them happily ever after !

I have been exercising regularly for about one hour twice a day which I believe resolved the problems of stiffness and sleep which bothered me earlier (I was diagnosed about 4 years ago).

I enjoy a quiet life and I enjoy it as God's gift ..including breathing, food, music , staring at the beautiful trees , etc. etc. and have very supporting and positive wife and children. I am actually happy.

My plan was to search for some thing (including drugs or herbs) which may target specifically the tremor problem and had in fact started one or two threads on our forum about tremor. I started using Kamedrin about a year ago encouraged by an input of one of forum members (his name escapes now) who said it worked for him. It worked for me as well magically with no side effects but unfortunately its usefulness waned gradually and my tremor came back in recent months.

I was taking mucuna (one tea spoon full) 3 times a day and I believe it benifitted my health greatly but it did not help my tremor unfortunately.

It is interesting that you (dear members) are asking me all these questions but the neuro doctor did not. More remarkable is that I prepared a two page of my medical history containing basically the same information that I am putting now to you and I handed it to her at beginning of the appointment but she returned it to me after glancing at it for few seconds with a look from her which I interpreted to mean (probably mistakenly) "why are you handing to me this crab".
I must say that my tremor was very severe during the appointment and I was lost for words trying to inform her some thing she did not ask me about (how I felt and how I am coping ), that I am really very well and this tremor was only because of nervousness then.

Any way, she argued that she is the expert and her assessment of my condition is that I am under medicated and half measures would be useless and it is similar to treating diabetic patient with less than the correct dose of medication.

I wanted to tell her very politely that even among PD specialists there are two schools of thought, one of which believes in aggressive medication while the other believes in minimum medication to maintain patient acceptable quality of life ... but she cut me short saying that I am denying myself a good quality of life.

When I told her that I have adapted myself to this illness she said : Why have you waited 6 months for the appointment if you are not going to listen to me. I did not answer as I was so tired and disappointed. I and my wife were hoping to hear words of praise and encouragement for what we achieved ..(happiness in spite of PD) and we were hoping to discuss a plan based on exercise and minimum medication .. yoga .. taichi etc. ..but we were made to understand that these methods including exercise are of minor importance. She did ask why I am taking my dozen well researched supplements and although I had spent many hours researching the benefits of these supplements I answered her that these are my placebos.

I have been feeling very low since. I already started the regime of gradually increasing sinement , and I feel notably worse. Apart from the sickness, my tremor did not go but changed in nature and became more jittery and more annoying.
I made a large order of sinemet following your advise just in case I will be eventually hooked to this medicine.
I will update this thread later. thank you again.
Imad

Dear Imad,
Stress, as you will know from this forum, has the habit of making our PD worse, and it can take a little while to settle down. So I am writing really because I can feel your distress....

Ok so there are a few things that you need to sort out in your mind, and sinemet has kind of got a bad press, mostly due to it having been prescribed in an irresponsible way in the past, it is fair to say that these are not aspirin! On the other hand they can bring great benefits too. I have been on them since day one of my diagnosis, and I have kept in control of what I take.

So the first thing you must think if you have started on sinemet is not that they are a bad drug, they are not, and have raised quality of life for many people. Equally though they have caused problems.... this is mostly because the way the drug gets delivered is poor, and can be a bit of a rollercoaster, and even among those who are supposed to know more education on this drug is badly needed.

You say you feel worse, and it would be good if you sort out in your mind how much of this is that you have let go of the idea of doing without them, and how much is physical effect. They do change things, and they do not agree with everyone. So the second thing you need to do is look at those changes and objectively see what is actually happening. You know, are you more sleepy, or are you moving better, or is your speech a little improved......... or balance....

If you do not see any improvements at all then contact the neuro, but give it a little chance on this low dose you are on. A month should show some benefits if they are going to be there......

The third is that you need to let yourself settle on a very low dose before increasing it. At your pace. You are the only person who will objectively be able to understand what is happening to you. From the outside, we know, people do not see us as we are...... So take it slowly.... so a couple of weeks or so before increasing, and give yourself time to reflect on what it is actually doing, and ask family and friends if they can notice things that you can't.

Now none of this is medical advice, I can't help with that, none of us can do the job of a doctor, but it is to do with your attitude, not only to your condition, but to the medication. For some sinemet is something to be feared, they have seen it at it's worst. But for you, you need to respect it. Fearing it will not help you with this. It needs to be like a new friend you are not sure of, but are willing to give a chance........

I get the feeling from your posts that your tremor is the thing that is bothering you most, and this is one of the things that are difficult to treat, at least of the physical symptoms. The wearing off and on of medications can lead to PD symptoms being 'worse' at beginning and end of dose, so you need to look to see if there is an overall improvement. And remember that your brain is sensitive and reacting to something it is not used to, and needs time to adjust. And so do you............

Take everything slowly, it is your body and you know it better than anybody else. And remember it is not a matter of getting hooked on this med, if you need dopamine then it is an essential medication, a replacement, but only at the amount you actually need, and you are the person who can observe how that works. You say yourself that you were stressed by your appointment, and disappointed too, and that increased your tremor. And most doctors now are working to keep patients on as low a maintenance dose as possible, unlike in the past where they were not so cautious.

There is more, much more to PD, but you know that already, and are well prepared by the way you have informed yourself, though all the reading in the world does not match up to the reality of what we actually experience, the changes that a medication can bring.

The only other thing I really wish to add is to keep in touch with your neuro on this, if you really are having a hard time with it, then the neuro should be informed so you can be advised on what to do. If they are undertaking your care then there is also an accompanying responsibility that goes with it...

I wish you all the best with this, take care and let us know how you are getting on with things....

Lindy

Imad,

Just like we have a chemical imbalance, so does your neurologist have a profound imbalance in the essential traits of what makes a good doctor. Doctors need to be attuned to working with people; they need compassion and good listening ability - what is commonly called "emotional intelligence". I don't care if she aced her organic chemistry classes, practicing good medicine is bot an art and science. So her lack of interpersonal skill is right up there with our lack of dopamine-- too bad no amount of levodopa in the world can begin to touch her deficit.

First, I always thought it was the neurologist's goal find a balance for you between putting you on the least amount of meds possible and ensuring that you are mostly functioning or "on" each day. Where in the world does she come up with 900 mg? Did you ask her? Not in a way to sound challenging, but out of genuine curiosity. Maybe she has a very legitimate rationale. What I do not understand is this antiquated approach of not explaining thoughts or reasons or anything to the patient who then has to live with this decision.

Clearly she has not even considered your concerns or wishes. In my mind, a good doctor would have then tried to talk with you about these concerns and factored them into a prescription that is appropriate for you as a person not as a textbook caricature of PD. Worse, Imad she has belittled you in the sense that you feel you challenged her or were out of line with your concerns. She, in essence, took away any locus of control you may feel you still have in dealing with a chronic illness...unconscionable, in my book. If a doctor can't handle these subtleties or have any remote insight into what we must face every day not to mention an ounce of compassion...well frankly they should never work with anything that doesn't have a tail and a twitchy nose.

I would encourage every one to start taking advantage of the Web. There are many rate your doctor sites out there...Health Grades or Vitals - I plan to start using them; doctors really need to learn a little accountability. If they want to research they should stick to the lab setting. Our med schools really need to revamp their programs and even begin to require that med students in essence be tracked by considering that emotional intelligence or interpersonal skill is of equal weight of mastering a subject area.

My "expert" opinion as a lowly patient,

Laura

I wish to reflect and update.
First I must express my infinite gratitude for the overwhelming support I got from all of you. I know how much thinking and effort goes in your superb postings that are written with thoughtful analysis, careful wording and generosity to a fellow patient whom you hardly know personally.
I have increased my 100/25 sinemet to 3 daily according to following schedule (typical):
- I get up at 9 am after restful good sleep. start one hour yoga , cycling and 15 mins of hot/very cold shower. No medication taken. Feel at my best no tremor or any notable symptom.
- 10.15 a.m take 100/25 tablet before a rich breakfast. I usually spend the following hours in front of the computer while listening to music and some times when my grand children with us, I play with them. Tremor in right arm, limb, and chows notable and annoying. Occasionally I feel a bit tiered and sleepy and lay down in bed for 15 to 40 mins.
- 2.15 am take second 100/25 tablet.
- take a good and rich meal at about 4 pm.
- 6.15 take third 100/25 tablet.
- watch tv .. computer work ..etc.
- 7 pm : one hour exercise : taichi and cycling
- usually watch tv

The above describe what I do on most days but of course this routine is broken some times by going out accompanied by family .. meeting relatives and friends visits. My tremor usually increase by physical and mental activity.
So far I have not noted improvement on the present dose of sinemet.
Cheers. Imad

Imad did you have any stiffness or just tremor? if you don't feel better on 3 25/100s a day you may just not need the sinemet - as you thought in the first place!

is there a way to ask your neuro questions? i surely wouldn't get addicted to a drug that isn't helping.

tremor is much harder to control and i've known a few people say anticholinergics help tremor, but 3 25/100s of sinemet should make the rigidity go away if you have any. i've probably confused you and should go back and read all of your symptoms. i may be back.

ok you say you don't have a problem with stiffness? is that right? and you clearly stated you don't feel any better. so why take it? i don't usually get into telling people what to do because i shouldn
t; not an MD. But if you can 'postpone sinemet and especially if it isn't helping at all...

maybe if you titrate back down you'll realize it was helping. But you could , as one friend says, 'Have a slow leak" and my neuros have confirmed that sometimes people with pd get it mildly and don't become debilitated.

hope that's the case with you but i am not advising u to do anything without the doctor knowing even though i would because she is just going to suggest it anyway.
did that make sense?

oh one more question. are you taking a whole tablet 3x a day or 1/2 tab - 1/2 tab would possibly need to be increased.