WARNING
And just in case you did not see it the first time
WARNING
DO NOT TRY THIS AT HOME
I AM NOT A DOCTOR.
This is just an blog about my observations
Parkinson's Disease is a funny thing. Not ha ha funny, more of a hmmm type of funny.
There is no known cure. And doubtful there will be anything found in my life time.
So. You treat the symptoms, and try to make life as comfortable as possible.
With most diseases. The doctors know by experience ( which, by the way is only having made the mistake already) that if they prescribe X amount of Y drug. then the patient is either cured or leads a normal life.
With Parkinson' there are 2 main drugs used to help reduce, control, corral, hide, disguise your Parkinson's symptoms.
Drug Number 1, Leader of the pack, voted MVP 20 years and running Levodopa
Dopamine Replacement : replaces the dopamine your body no longer produces
Drug number 2 ,goes by various names, the bad boy of Parkinson's Mirapex
Dopamine Agonist : stimulates the nerve cells to accept more dopamine
Parkinson Canada has some great information
See https://www.parkinson.ca/about-parkinsons/treatments/
With Parkinson's there are so many different symptoms when dealing with PD. And every Parkie is different in the severity of those symptoms. What is good for patient A may not be good for patient B.
The drugs the doctor prescribed today may not work in a week or a month.
Or can work for years.
And that dosages are more of a suggestion, or sometimes a matter of guess work.
Most Parkie's take the doctor's prescribed medications. No questions. no thought.
If they work.. great . Which is 98% of the time.
But what if they don't, or if they only partially work. What then??
You also have to consider the side effects.
To much Carbodopa/ levodopa (C/L) and you move fine for a while. But then eventually you get a case of the wobbles. Parkie term for Dyskinesia. Which is also your body telling you STOP enough already.
To much agonist ( an agent that stimulates the brain cells to accept more dopamine ) ex. Meripex, and you can have ICD ( Impulse control disorder) behaviors. Or to Parkie's "I Can't Desist".
Recently I was and still am part of a trial. Movapo
For those people who haven't read my Pulitzer Prize winning 3 part expose of my experience. Read them, or wait for the movie called "The Needle And Me" staring George Clooney as me.
Movapo can be a Parkie's dream, a shot that works in ten minutes, and lasts for 90 minutes. And you can take it up to 4 times a day.
But....
There is always is a but with Parkinson. No really... there is always a BUT, and it usually is big.
Too much, and combined with your regular meds can bring on all of the above.
In the perfect world. You would notice the symptoms and head to the doctor,
He would prescribe. X dosage of C/L. and maybe a small dose of Meripex. Some Physio to work the old tired muscles.
And you are set for the rest of your natural life.
BUT
Like I said. I treat the drug plan given to me by the Dr. as a suggestion.
It is a collaboration between the patient and the doctor to fine tune the drugs to fit the Parkie.
The doctor has told me what my limit is. That I will not exceed.
You also have to take in to account, The Parkie's activity level.
The bottom line, the point I want to make is.
YOU ARE THE ONE WHO IS CONTROL OF THE AMOUNT' AND TYPE OF MEDICATIONS YOU TAKE.
Read up there are some very good articles written in terms for regular people.
I for example found I was more off than on, So I added 1/2 of a C/L pill (50mg)
I had some improvements. But not enough so I added another 1/2.
That worked.
If I had developed the wobbles . I would have gone back to the original dosage.
But I always tell the Dr what I have done and when.
The only person who knows how you truly feel is you . You can tell the doctor what is happening to your body and how you feel. But he only has the information other Parkie's have given him, and what he has learned.
Randy's Drug rules
Dosages are only suggestions. Very good suggestions, and should be followed whenever possible.
It is okay to increase your dosage one time for Special occasions, But be prepared for the consequences.
Tell the doctor everything. If you have experimented let him know.
He could use the experience as well.
Things I have learned about Parkinson Drugs in seven years.
Always take your drugs on time. Set an alarm on your phone, watch or care giver.
If you miss a dose. Take it right then. Adjust your timing every 4 hours after. DO NOT WAIT UNTIL THE NEXT SCHEDULED TIME TO TAKE THEM.
Levodopa has a 4 hour half life in the body. Regardless of how much you take.
If you drugs wear off in 3.5 hours, (which happens) it's okay to take your next dose then. Just remember to adjust your next dose. But your body will tell you.
If you need your drugs to work quickly , Take them with Coke, Pepsi, or orange pop.
Yes you can wash your drugs down with a beer
Being physically active will help the drugs work better, and longer..
Don't be afraid to increase your dosage a little bit , for special occasions, weddings, parties, important meetings.
A single Levodopa pill taken at bed time (wink, wink, nudge, nudge ,say no more) can improve your hang time so to speak.
Oh and guy's take the ED pill. That's the least you can do for our partner
Life is to short to live it at less than your best.
My daily intake of mind altering drugs
Movapo for off times
Cialis for on times
Zopiclone for down times
Doculax for the go times
Remember
It's only inconvenient
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