[Robert]

Howdy Folks

Garrett, good topic.

I have spent the last 18 months trying to find the right dosage of the C/L to try to allow me to function well.  But all that time there was and is a subtle subsurface current of this apathy thing going on too.  We are, after all, in a situation where the only apparent help we are offered is some magic pills.  And if that does not work, take some more pills and some more pills etc.   At my last Dr. appointment, where we again upped the C/L dosage,  (I am up to 1800 mg of C/L per day now, and am, after two weeks, thinking I need just a bit more to get full day coverage!!), my Dr. told me he may have something, yet another different pill of course,  that can help me regain some of my sharpness.  I think in his kind way he is observing and addressing this apathy thing.

Robert.

[Robert]

Howdy Folks,

My doctors prescribed a pill called Folbic, which is a B6 and B12 supplement pill.   They did not order any blood tests for this.  They told me that every PD patient will have B vitamin problems so every patient needs this supplement.

Indidently, I have had very low B and D blood levels for several years prior to my PD diagnosis last year.

I think they call this Bradybvitaminia!   🙂

Robert

 

[Robert]

Indeed I do.  But only occasionally.  I am just thankful for the pills.   And there is some cost involved that I can afford.   I cannot begin to imagine what it was like before the invention of the carbidopa/levodopa  medicine.  Or if one would have trouble affording any pill the Dr. recommends.

[Robert]

Hi Ally and you other PD folks.  (This indeed meant to be humorous. But sadly, it is entirely true)

YIKES!!

First snow of the season here near Chicago.

Uh oh!

I thought I could sorta hide my PD.

Last year was no big deal.

But his year —  BIG   PROBLEM walking on slippery sidewalks and parking lot!

I am afraid I look like an old man with PD!!

Legs just really stiffen up!

People looking at me like they should ask if I am alright or need some help!!!

I am gonna have to think about this aggravating and revolting development!!!

Hmmmm!

Any suggestions would be welcome.

What a journey this PD is!

Robert

 

 

[Robert]

Hi Jo S

I did not see your post before I posted my info and did not mean to seem to ignore it.

I sorta agree with you.  A lot of this labeling doesn’t solve any problems.

But for me, it is important for planning purposes to have some feel for the prognosis.  We each have to figure out who might care for us  and who might care for those we are now caring for when we can’t do that anymore,  with all the financial and logistical stuff that comes with that.  I know that my PD progression is rather quicker than expected.  So it is useful to have some feel for what the Doc thinks of my case in relation to some metric.  This staging I believe is just the Doc’s way of documenting that in their vernacular.  It is kinda of a cold thing to label a person in such a way.  I agee with that sentiment entirely.

Best wishes to you on your PD journey.

Robert.

[Robert]

Hi Ally

I’ll start off.

H & Y Stage II and 1/2.

Thanks,

Robert

 

[Robert]

Julian

Good question and book recommendation

I was diagnosed a year ago and immediately started Sinemet last November.  So coming up on one year.I started at 1 and 1/2 Sinemet 25/100 3 times a day.   Over the past year I have raised and lowered and then significantly raised the sinemet dosage and timing to get to the level that seems works for me.

I am currently on 2 25/100 5 times a day plus sinemet entended release 50/200 at bedtime. Plus if I awake in the middle of the night I am to take 2 25/100 to get back to sleep.  Gotta keep that tank full!  The goal is get to the sinemet dosage to provide me with the level that provides for a consistant help throughout the day.  Obviously some need more than others.

I have not had any dyskinesia or hallucination side effects from the sinemet.

I have trouble moving and walking if I am late with a dose or skip a dose.  I have stiff and slow PD.  Never had much of a tremor.

As Jean M says so often – this is a very individualized disease with very individualized treatments.  It is very interesting to see how everyone is different in their PD presentation, progression and treatments.

I agree that the Ahlborg book is a very good reference for PD.  My quickly higher dosage of sinemet is actually something I found that he discusses in the book as not a totally unusual occurrence and not something to be afraid of if it works.  The right dose is the dose that works for you.

Thanks,

Robert

 

[Robert]

Howdy Folks,

I am in my first year and 11th month of taking meds.  I will be having my 6th visit with my MDS neurologist in a few weeks.  We adjusted meds by email twice too.  Have not yet found the dosage and timing that works for me.  I am now familiar with what off times means.  Was it like this for others in their first year?

Thanks,

Robert

[Robert]

Howdy folks.

I am detail oriented, so bear with all the details.  And I ask for forgiveness up front for my lame attempts at humor.  If you can’t have a sense of humor with PD I don’t know how you can cope with this “very interesting disease, this PD”.

I would be interested if anyone else has had similar experiences in getting to either the right doseage or the right meds to get them on a somewhat even keel with the “very interesting disease, this PD”.

I have indeed had to change my medication doses.  Here is my Parkinson’s medication travelogue so far. ( dates are approximate).

Nov 2018 started on 1 1/2 sinemet 3 times a day.

Feb 2019 added entacapone with the mid-day sinemet dose. To see if it extends the on time.

June 2019 added sinemet at bedtime

At this point it seemed like the sinemet quit working!

Now we (my Doctor) decides to get serious about the meds!

July 2019 changed to 2 sinemet 5 times a day plus 2 sinemet controlled release at bedtime plus 2 sinemet if I awaken during the night.  Which I always do.   That adds up to 14 sinemet a day.

July 2019 added 1 florinef to counter low blood pressure.

August 2019 added 2nd florinef to counter continued low blood pressure.

I got two different pills for bladder problems too.

So a year ago I was started on 4 1/2 sinement daily to start and now eight months later I am on 14 sinemet daily and two florinef pills for low blood pressure.

I do feel kind of drugged up.

Oct 2019.  So now I am now starting to again get occasional wearing off at the end of each sinemet dose.

Next appointment is in November, my one year anniversary of starting meds.

I think I would like to return this high dose version of PD and get the low dose version.  I am new at this.  Can I still do that?  Did I miss the deadline or something?  I do have a good excuse if I missed the deadline.  I have PD!

Thanks,

Robert

 

 

 

[Robert]

I have lived here for 42 years.   My father was career military so I lived in many places as a youth.  I attended 7 different schools during 12 years of public schooling.  Thanks for asking.

 

[Robert]

Prescribed by my PD Doctor:

1  Carbidopa/Levodopa,  Started on 1 1/2 pills (450mg) spread throughout the day.

Now taking 1600mg spread through the day and night.

2 & 3.  Two different pills for PD related bladder problems.

4  Flornef to deal with low blood pressure from all those levodopa and bladder pills.

5  Flobic, a B vitamins complex pill to deal with frequent PD caused B vitamin deficiencies.

6  Entacapone as needed.

Plus three other pills for other non-PD stuff!

After just a short while on my current regime, I feel better than I have in months.

It is clear to me that my Dr. believes Parkinsonism is a dopamine deficiency disorder that is best treated first by replacing the missing dopamine.   And everyone’s effective dosage is unique and it takes a while to find the effective dosage.  I have read that not all neurologists have that same treatment philosophy.  I think some PD Dr’s believe that not just the dopamine deficit need be treated but the body’s ability to use dopamine needs treatment too and there are pills that work from that side of the process.  My 1st second opinion was with a Dr. who would not have started with C/L.  He said I just needed something to help use what dopamine I still had.  I decided to be treated by my 2nd second opinion Dr.   My original PD Dr. would not have prescribed anything at the time she saw me.  But in fairness to her my PD symptoms went quickly downhill in just the few months after seeing her and before getting the 2nd and 3rd opinions.

Lots and lots of pills.  But they really are magic pills for me.

 

[Robert]

North Suburb of Chicago, Illinois on Lake Michigan.

[Robert]

I have been on pills only since last November and I am now afraid not to so I haven’t missed a dose yet.  I use an apple phone with an apple watch with alarms to remind me to take the pills for the three times a day I am away from home.  I have a slim aluminum pill holder that I attach to my key ring.  Holds the 6 round yellow pills with room for the couple of the other pills I take.  I found it at CVS.  I have found that remembering to remember is another one of those items on my long list of things that is just not the same now so I do need the alarm reminder.  Getting this set is part of my night time routine each day.

[Robert]

Thanks Jean.  I cannot even begin to imagine what it was like before the miracle drug carbidopa/levodopa.

 

[Robert]

Howdy again.

FYI for you wise old timers who probably have quick questions about my story.  One of the my two second opinions did mention that three word phrase, which will not be spoken aloud, that begins with the letter M, as something to consider. But that did not seem obvious to the other two Drs and an MRI did not show that as obvious for now.  We are going ahead under the presumption that that is not what is happening to me.  I do have an abnormal DATscan so I guess I am convinced this is not just normal aging and that I really do have dopamine “issues”.  And now my Dr. and I are having fun recently working on figuring out how to deal with stiffness and pain and low BP issues and interesting “plumbing” issues.

I understand my latest treatment plan is:

A lot more of the magic pills and more often for this and a then a couple of different magic pills for that and now another pill for this other thing that has decided to visit you that is a side effect of that other pill that I gave you more of  for the first this and that is also, similarly, a side effect of this other pill that I gave you for the first that!  And then lets have a follow up visit soon to see if what I am having you do for this this and this that and that that and that that are working.

This has made me dizzy.  But I cannot tell my Dr. about that.  Because I do not want to be prescribed another pill for that this too!

I suppose I am not the first to notice that they no longer bother to ask who I am when I go to my pharmacy.

Robert

[Robert]

Howdy folks.

I appreciate you letting me join your forum.  I was diagnosed with Parkinsonism a year ago May.  That movement disorders doctor said I am certainly stiff and slow but it’s early so come back in a year or so.  Second opinion three months later said something about about HY Stage 3!  Third opinion said nontremor likely PD, HY Stage 2.5.  (I guess I believe them.  For the couple minutes each day that I feel “normal”, I sometimes wonder).   So I was started on the routine 3xday Sinemet.  Six months later we just tripled the dosage and timing of the Sinemet to see if that helps. (Tell me again when we are supposed to eat?)  My diagnosis is still labeled Parkinsonim, likely IPD.   Things seem to be progressing a bit quicker than I thought they would   I thought I had selected the slow and steady version of PD when they gave me that PD menu!  So I have joined the forum to see if I really am just another of the apparently one million unique and different variations of Parkinson’s.  I suspect I am.  I am quiet by nature and may not post much at all, but do know that I appreciate being able to see what you not so quiet types have to say and what you have experienced.  I am 65 and continue to work full time.  I had planned to work until 70.  I have told my wife that I don’t feel ill.  I just feel really really weird most of the time!  The best phrase of where I am is something I read in my internet search.  It is that I am now missing “the anticipatory readiness to react”.   It was like I just woke up one day and it was gone.  Your forum has a very good tone.  My attitude is similar I think.  Things are what they are.  Let’s figure out how to be very smart about how to make the best of it.  Again I appreciate you letting me be able to share in our travel down this very interesting turn we seem to have all taken in our life journeys.   Do know that all your sharing is really helpful and appreciated.

Robert