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jeff1946

Carb/levo initial usage.

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My wife, who is 51 yrs old, was diagnosed with PD about 4 weeks ago....the Dr. put her on carb/levo at 1/2 pill 3 x's a day for one week...and has worked her up to

1 pill 3x's a day at present...the increase all at one week intervals. She now has been at 1 pill 3x's a day for almost a week.

 

My question is this:

Will the drug work on all the PD symptoms...or just some? It has helped the tremors in her hand...but not the loss of movement in

her arm when walking. Does it take awhile for the drug to start working fully...are we expecting too much at first?

 

We are new at this...and need some insight for those who know. Her next Dr. appointment is still 4 weeks away.

 

Thanks for any info you can provide.

 

Jeff

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Jeff,

You are a good man by getting involved in this issue early on and getting all the info you can. Well done sir. I will tell you, it may seem overwhelming now, but it is not a death sentence. Great strides are being made daily..

Secondly, welcome to the world of Parkinson's Disease (PD). I have been through this, as almost everyone with PD has. But let's deal with the issue at hand.

Sinemet is the "gold standard" for PD. Sinve there is no test for PD, the best marker to tell if someone has PD (as opposed to an issue that similar symptoms) is to give them Sinemet. If the symptoms subside, the patient usually has PD.

Sinemet will not take care of all the symptoms. Many of us take what we call a "cocktail" of medications. Sinemet can take care of many symptoms and lessen others, there is really no med out there that will take care of them all. That is why you will see many of us on many different Meds, thus a "cocktail."

This is probably the dr trying to find a starting point and severity level. Once that is found, the dr may change Meds. Trust me, there are plenty of them out there. If she has a good response to sinemet, he may try the extended release sinemet. The dr may also try a new medication class call the dopamine agonists (mirapex or requip).

There are really 2 tough parts about this disease that are very frustrating for patients and caregivers alike:

1- most PD medication is a "start low and go slow." The Meds are usually started at a very low low dose and increased at very small increments. This is mainly due to the fact that a small change in these Meds can make a big change in the the patients progress. It is not a disease for the impatient. Trust me, I am very impatient.

2- the toughest part, I think, for all involved is the multitude of issues that the disease brings on. This is not to scare you, because everyone is different. There is no cook book answer for everyone. Some of the other issues it can bring on are dystonia (severe muscle spasms), anxiety, depression, joint and muscle rigidity, difficulty swallowing, falling due to lake of stability, daytime drowsiness, insomnia, agitation, ... I'll stop there. The main thing to remember, when she needs to rest, make her rest. Our bodies need rest. All of our dopamine is being used for daily activity and is expended very quickly.

Hang in there. There is me and a whole bunch of other people here you can talk to. Look for a local support group in your area, they are a great wealth of information.

Lastly, please go to EVERY appointment with her. I bring my wife and she is my truth serum. My answers are always, Fine, going good, and no problems. My dr then looks at by wife as she unscrolls what appears to be the declaration of independence of strts to read. This is a good thing. Outsiders see things we do not. The most important link between her and the dr is you.

It is also a great idea to keep a daily journal of happening throughout the day. In the NPF search box type "medication management worksheet" or marks medication management" and you will find a worksheet I made especially for PD patients. It can be downloaded to Microsoft excel to save and update daily or printed off and filled in by hand. I usually recommend saving it on the computer then emailing it a few days before the next appt. This way, no time wasted at the Ppt with the "how are things going" routine. The dr has everything there and cam read it before you come in.

Let me know if I can help

With anything else. Here is a great quote, " show me a person who is a winner and I will show you a person who has had to face adversity." ~Lou Holt

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Jeff,

You are a good man by getting involved in this issue early on and getting all the info you can. Well done sir. I will tell you, it may seem overwhelming now, but it is not a death sentence. Great strides are being made daily..

Secondly, welcome to the world of Parkinson's Disease (PD). I have been through this, as almost everyone with PD has. But let's deal with the issue at hand.

Sinemet is the "gold standard" for PD. Sinve there is no test for PD, the best marker to tell if someone has PD (as opposed to an issue that similar symptoms) is to give them Sinemet. If the symptoms subside, the patient usually has PD.

Sinemet will not take care of all the symptoms. Many of us take what we call a "cocktail" of medications. Sinemet can take care of many symptoms and lessen others, there is really no med out there that will take care of them all. That is why you will see many of us on many different Meds, thus a "cocktail."

This is probably the dr trying to find a starting point and severity level. Once that is found, the dr may change Meds. Trust me, there are plenty of them out there. If she has a good response to sinemet, he may try the extended release sinemet. The dr may also try a new medication class call the dopamine agonists (mirapex or requip).

There are really 2 tough parts about this disease that are very frustrating for patients and caregivers alike:

1- most PD medication is a "start low and go slow." The Meds are usually started at a very low low dose and increased at very small increments. This is mainly due to the fact that a small change in these Meds can make a big change in the the patients progress. It is not a disease for the impatient. Trust me, I am very impatient.

2- the toughest part, I think, for all involved is the multitude of issues that the disease brings on. This is not to scare you, because everyone is different. There is no cook book answer for everyone. Some of the other issues it can bring on are dystonia (severe muscle spasms), anxiety, depression, joint and muscle rigidity, difficulty swallowing, falling due to lake of stability, daytime drowsiness, insomnia, agitation, ... I'll stop there. The main thing to remember, when she needs to rest, make her rest. Our bodies need rest. All of our dopamine is being used for daily activity and is expended very quickly.

Hang in there. There is me and a whole bunch of other people here you can talk to. Look for a local support group in your area, they are a great wealth of information.

Lastly, please go to EVERY appointment with her. I bring my wife and she is my truth serum. My answers are always, Fine, going good, and no problems. My dr then looks at by wife as she unscrolls what appears to be the declaration of independence of strts to read. This is a good thing. Outsiders see things we do not. The most important link between her and the dr is you.

It is also a great idea to keep a daily journal of happening throughout the day. In the NPF search box type "medication management worksheet" or marks medication management" and you will find a worksheet I made especially for PD patients. It can be downloaded to Microsoft excel to save and update daily or printed off and filled in by hand. I usually recommend saving it on the computer then emailing it a few days before the next appt. This way, no time wasted at the Ppt with the "how are things going" routine. The dr has everything there and cam read it before you come in.

Let me know if I can help

With anything else. Here is a great quote, " show me a person who is a winner and I will show you a person who has had to face adversity." ~Lou Holt

 

Mark..

 

Thank you for the reply, I only found it today...as I'm still learning how this whole forum thing works. :^)

 

My wife had a 2nd opinion appointment last Friday....which well very well. he confirmed that it is PD that she has.

This new Dr. seems better than the first one, and she feels much more relaxed with him, as do I. He spends a lot

more time explaining things, which is great.

 

He now has her on a time released carb/levo at bedtime. This is helping gt her thru the night....and

making the mornings a bit better.

 

We'll wait and see how things go now for a few months. She also has started taking the daily doses on an

empty stomach...which seem to work a lot better for her.

 

Anyway, that's for the nice reply....it certainly helps understand more.

 

Jeff J

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Jeff,

Anytime you need something, let me know. I will not lie, it is a rollercoaster ride for all involved. One of the most important things you can do is go to every appointment and tell the dr what you see. My wife and I made this pact when we were dating. I will never get mad or feel like she blindsided me with any question she asks the dr. We call her the truth serum. I would always answer, "fine, no problem, feel great." then he would look at her and it was like she was unrolling the declaration of independence. She saw things that I did not see. She was on the outside. Make sure you discuss them with her before the appt. Keep notes, but don't keep them a secret. Tell her you are jotting notes to help he not hurt her. It is bcquse you love her qnd want the best for her. Most of all, be honest with eachother. You can't read her mind and she can't read yours. Communication is the key.

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Mack,

When you click to get into the pharmacist forum you will see the list of questions posted there. The second post from the top is "medication schedule" which, when clicked on, should allow you to open or download the program. It is in a Microsoft EXCEL format so, you must have Microsoft EXCEL to be able to use it. If you have a different spreadsheet-like program, let me know and I will try to format one for that program for you.

Thanks and let me know.

 

I need to know where adn how I can download your "Medication Work Sheet".

 

Please provide a working link.

 

Tx

 

Mack

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