[Robert]

Hi Ally

I was thinking about your topic and it dawned on me that it is in the 90’s today where I live and we had one of the coldest winters in years last year.  But you know, I didn’t really notice the cold last winter or give a thought to the current hot days.  I don’t go outside any more than I have to since my Parkinson’s showed up.  I still work and I live in a townhouse type arrangement where my car is in a common garage just outside my lowest level door.  Each day, I just get in my car, drive three blocks, park right by the back door to my office and walk but 20 feet to the door and I am all set for the day.  Same thing going home.  Before all of this I was outside all the time.  I do think I may be hiding at bit from people yet, I admit.  But even so, I never really thought about this before.  I will say this about body temp regulation.  I now sweat just drying my hair with a towel in the morning!  I sweat at just the thought of sweating.  This is a change for me.  And when I am chilled, I am really really stiff.

Talking about cool, brings to mind that it must have been much more difficult to cope with the weather with PD 30 or 40 years ago.  Where I live, we will often have a dozen or more sub zero days and certainly 30 to 60 sub freezing days a year.  I can remember many days when I was in my twentys and thirtys  that driving a car required always having a disposable pen or pencil and a bit of mechanical knowledge.  On many days, you had to take off the air cleaner, but a pen or pencil in the carburator to keep the butterly open and sometimes spray some starter fluid directly into the manual carburator to get the old car started on a very very cold day.   Imagine doing that with PD!  Nowadays, with fuel injection and electronic ignition standard in every vehicle you don’t have to deal with that.  You don’t even need to know that a car has a carburetor.  Just get in, put your foot on the brake and touch the starter or turn the key.  I now even have a remote starter on my car so I can start it to warm up the car for 5 minutes before I drive home at the end of the day.   Much, much easier nowadays.

So, no danger of heatstroke for me so long as I keep the electric bill paid and my car full of gas.

Thanks, and best regards to all.

Robert C.

[Robert]

Hi Folks

I have a motivation story that was brought to mind recently.

I recently had to make a phone call to a client who is holed up with his family in their home in Idaho. That call and seeing on the news that Idaho is now a semi-hot spot for this COVID virus triggered a memory that the great novelist Ernest Hemingway resided in Idaho for much of his life.

I read an interview of Mr. Hemingway many years ago where the interviewer asked about the actual techniques of the writing process and how he is gets motivated and keeps motivated to write.   In answer as to his ability to be disciplined and meeting deadlines and such, Mr. Hemingway said he was just like most people in actually getting down to the task at hand.  There is usually a process of avoiding doing the hard things and just doing the easy things.  As an example, I think he said that just before he got to work on his masterpiece short story “Old Man and the Sea”, the first thing he did was “defrost the refrigerator”.  I think if we are all honest with ourselves, we all have “defrosted the refrigerator” a few times when the hard work was looming over us.  So, our basic human nature to avoid the hard stuff for irrelevant stuff is just part of all of us.  We would rather do things that make us feel better now than things that don’t make us feel better now.  (Whether the hard stuff makes us feel better in the longer term is another topic, isn’t it?).  I do think the chemical changes in our brains from this PD thing clearly changes our ability to feel better now as much as we could before.  I think we will all have times of yearning for the feel better times that came more easily when we had more dopamine in our brains.  I think we should beware of that.

With that I think it is very very very important that I clarify something.

A “warm bath” is NOT the same thing as “defrosting the refrigerator”,  for those of you who have been following this topic for a while.  It is considered to be ESSENTIAL  THERAPY!!!!   I really do have spinal stenosis!

I think I better get back to work.

Best regards,

Robert C

[Robert]

Hi Robert H

Thanks for the kind and wise comments on my comments.

Wells said and well received.

Robert C

[Robert]

Hi Sharon

I too received this PD thing as a very interesting retirement gift.  Though it seems to have found me a bit earlier than you at age 65.  I call my “new normal” Plan B.  I had a Plan A but now I am on Plan B. I totally agree that warm baths are a secret weapon against this PD thing many days.  I will say from my reading and research that depression is a well known and expected symptom of PD because of the changes in the chemistry in our brains.  There are “gentle” meds that can help with that in my experience.  It is not a lack of being able to cope.  It is a physical thing as I understand it.  In my opinion and experience there is no need to avoid treatment for that symptom too.  We will still have the anxiety of coping with the PD thing.  But the physical aspect can be addressed.  By the way my Plan B is now my Plan A.  So I have to come up with another Plan B.  My original Plan A involved me likely having to be a caregiver for my wife.  So now we are working on a Plan B because of the new Plan A.  Then when we move to that Plan B.  It will become our Plan A and we will have come up with another Plan B.  This is something that will always keep us busy.  Time for a warm bath , don’t you think!

By the way, if you don’t mind my saying so, at 78. you are impressive with picking up on this form thing.

Best regards,

Robert C.

[Robert]

Hi Toni

And good topic Ally.

I have had what most would consider a very rapid progression too.  My doctor’s were surprised at this and it took a year and a half to get the meds to where they seem to be working.  They finally realized that starting slow and adding things slowly was not working for me.  Enough of the baby doses!  This guys got a problem!  Let’s try the maximum doses for this one!  And so far it works.  My med program is to keep me flooded in Sinemet 24/7.  I have to have full coverage at night to be able to sleep.  Until we figured that out I was miserable.  With the usual disclaimers that we all know about yadda yadda everyone is unique etc. yadda yadda. (If you are new to this and don’t know what I mean by this – when you have met one person with PD you have met one person with PD.  Every one of us PD people has a unique and separate version of PD that is specific to only us.  What the heck kind of disease is that, you ask.  Well, if you have been told you have it, then you know!.  Right?  We  PD people call this the “usual disclaimers’ when discussing our particular PD and our particular meds and treatment plans and such so as to not imply that what works for one will work just as well for any other.  We PD people are adamant about not telling each other what to do.  We may kindly and carefully share what we do and what we may have heard others are doing.  Everyone has to decide what to do for themselves. with the help of a good PD doctor as part of the process). Anyway, that is what is now working for me.

Best regards to you on this “Marvelous” PD journey.

Robert C

 

 

[Robert]

Good topic Mary Beth

Hello Mark.  You are a quick study.  You already have the hang of it.

Mary Beth

I am just starting my third year after diagnosis and am 67 years old..  I think (believe, hope!) I have finally got my meds to where I want them about 6 months ago.  Boy, that took a while.   But even with that, I have good days and bad days.  Physically good and bad days.  Many more good days than bad days.  A bad day for me is when it seem the meds are not working and I have trouble getting around and my “plumbing” seems to not want to work properly and/or I just don’t seem to care about anything, and am surprised that the meds don’t seem to be working.  On the emotional side, I can sense what seems like a physical depression lurking and wanting to attempt a strike and try to take over now and then.  Not caring and being ambivalent about normal things is a new thing since the diagnosis.  I understand that is actually a “physical” symptom of the parkinsonism as it is a result of the chemical changes in the brain that occurs from the lack of dopamine production etc.  I have adapted to all this by knowing the next day will be different and usually better.  Patience is essential in all things PD related.  That applies equally to finding the right doctor, diagnosis, treatment plan, adjustment of meds, and also to figuring out how to adapt to the changes that will now effect what you want to do, what you can do, and most importantly, what you should do.  That last part is now most important.  We all now have to end each decision with “Ok, now what is it I should do?”  What you can do and what you want to do now must defer to what it is you should do.  I have my foolproof solution to a bad PD day.  I am my starting 35th year of running my own  business full time (kind a gag retirement gift this PD thing is. isn’t it?), anyway, so that means I am the boss and can do anything I want, any time I want to.  So long as those darn clients will just leave me alone (and not call me at home!!!)  On a bad day, whether it is physical or motivation wise, I just go home take a warm bath and take it easy!  Tomorrow will be another day.  When I come home at an unusual time, my wife will ask how I am doing and I say “Marvelous!”  Then she knows I am having a bad PD day.  Or at other times when she says I look a little stiff, I will say “you know I have spinal stenosis!”  That tells her that my meds are not working as well as usual that day.  (I just happen have spinal stenosis too and it is a fun phrase to use)  This is our code between each other , which allows her to ask without being worrisome and for me to answer without being complaining, each knowing to be patient and I will be better in the bye and bye.   But, you do need to strictly keep to the meds regime to keep on top of this PD thing.  For me that means to keep my system flooded 24/7 with Sinemet.   I have found that if you don’t take those magic pills, it ain’t gonna work out so well!

I apologize for any syntax or grammar problems in my posts.  It is hard for me to edit this with only three or four lines showing at a time.  I think that is a PD thing too.  Right?  And my touch typing skills, which I proudly acquired in high school (on a fancy new IBM Selectric typewriter with the typing ball , for you old timers out there) is seemingly losing the battle with this PD thing.  What I think I type and what I actually do type are not always the same thing, if you know what I mean.  My body’s many “muscle memory” abilities are slowly being challenged in a haphazard fashion.

Best regard to you all.

Robert C

 

[Robert]

Hi Michel

You illustrate the need for this forum.

Because this PD is so different for everyone, we each, eventually, must decide on a course of treatment or accommodation or whatever word we use to get on with our lives.  We all have different treatments that we try until we settle on one for a while and then make changes as needed along the way.  It is very helpful to see how others do while following their particular treatments and choices.  We do appreciate all the sharing of individual treatment successes and failures and adjustments.  It helps the rest of us make good decisions and choices on our PD journey.

Very good question for discussion.

Best of luck to you on your PD journey.

Robert C

[Robert]

Hi again

Anybody have trouble with dog and freezing?

My subconscious PD body is allergic to dogs.  Talk about freezing.  This is totally embarrassing because I live in a town where people treat their dogs better than they treat their children!  They like to walk around town showing off their latest canine.   If someone approaches me with a dog on a leash my body freezes.  The dog lover usually says something like, “it’s ok he’s harmless”.  Yeah, right.  Tell that to my PD.

When I am tanked up on the magic sinemet meds, there are many times that I think this is just a made up disease to keep certain unnamed people employed and to feel important.  (I don’t really believe that.  Those working to help us are Saints!)  Now, when a dog comes around, I really, really know I have a PD problem.  It is really, really weird.  It is indeed like magnets repelling.  It is a physical phenomenon that cannot easily be overridden.  So, I just avoid the confrontations as much as possible.  If I can’t, I just pull out my cell phone, turn away and pretend I am looking at a text message or something until they pass by.

I am glad my PD is not allergic to sweet foods.  Although my taste for coffee has evaporated over the past year!  I find myself not needing coffee in the morning for the fist time since I was an 18 year old Navy sailor 50 years ago!  Hadn’t skipped a day since until now.  I wonder if the meds cause this or if this is a PD thing too.

Anyone else have such “marvelously weird” PD discoveries along the way?

For you USA folks, Happy 4th of July.  My mother in law is Danish.  I think  she told me they celebrate July 4th too for some reason.  So Happy 4th of July to the Danske folks too. For you others, I just wish for you a happy day without too much freezing!

Best regards,

Robert C

[Robert]

Hi again

I reread my goofy post and had a further thought.

I have to put conscious effort into walking now.  It is no longer automatic.  When I put any effort into something else, like being fully dutifully and respectfully attentive to my wife, I am no longer able to also put the full conscious effort into my walking.  The result is the freezing of gait.  Really weird when it happens.  But the cause is obvious.  The automatic-ness we take a lifetime to achieve is now indeed truly impaired.   I find it very difficult to explain this concept to anyone who has not had a personal “taste” of it.

Onward and upwards.

Robert C

 

[Robert]

Hi Mary Beth

Good question about freezing.

Here’s my short tale.

When my magic meds (Sinemet) are wearing off or haven’t kicked in yet I certainly can not walk and talk or, get this,  LISTEN AND WALK, without freezing!

We all know the humorous observation that a person is so “slow” they can’t walk and talk at the same time or they can’t walk and chew gum at the same time.   I find myself freezing when I am walking in the house when my wife talks to me from across the room!  I can’t listen and walk at the same time!  Good grief!  That must make me look really “slow”!

On a more normal basis, I freeze at streets when I see a car coming.  My legs just get stiff.  So I just wait aor the traffic to clear before I ever enter a street.  This is true even when I am on with the meds.  I find that my new PD controlled body uses this freezing phenomenon to avoid being put in any position where it has to be ready to quickly react to another’s movements.  Quick whole body reactions are not automatic for me anymore.

Thanks for the question.

Best wishes to all.

Robert C

[Robert]

Good topic Robert,

My Parkinson’s started as just a hint here and there.  The first Neuro said it is early, no meds and come back in a year, earlier if you think you need to.  And then a couple months later, my Parkinson’s pushed me off the side of the road and watched me rolling down the hill and the second Neuro said possible MSA!  My reaction.  I don’t think so.  The third Neuro said just stiff and slow PD and said,  “Here, take these magic Sinemet pills.”  They worked.

I spent the first year visiting my Neuro six times to adjust the meds and their interactions with other meds I was taking for what we thought were bladder and prostate problems.  We actually reduced the amount of Sinemet.  We changed bladder meds several times. I eventually had a complete workup for bladder and prostate problems and found that there were no bladder and prostate problems.  All the issues with my “flow” works were related to the PD.  The brain and the plumbing valves were not talking to each other very well anymore.  So no more prostate or bladder pills.  And no more pills battling each other to see which could lower my blood pressure the most or which could be the first to make me feel the lousiest each day.

Now it is relatively simple for me.   Without dealing with the interaction of the Sinemet with the bladder and prostate meds, we could focus on what the PD needed.  More Sinemet.   My PD demands Sinemet.  So I am on a high dose of Sinement 24 hours a day 7 days a week.  So long as I flood the PD with Sinemet it is happy and leaves me mostly alone.

I do take one other pill, Midodrine, for the side effect of low blood pressure.  But that pill and the Sinemet get along well.

So now I take just two pills for the PD, and I sometimes feel better than I have for years.

But, it does cross my mind frequently that I sure felt a lot better before I “started taking” all of these pills!

I must admit that “started taking” and “needed to take” aren’t the same.   I do believe the Sinemet is a magic pill for me.

I cannot imagine what PD was like before the discovery of Sinemet.

We have a family agreement that we do not blame my PD diagnosis for things that are different.  When I am late for my meds, I am “off” if you know what I mean and look awful and awkward. When that happens, I have a phrase I use with my family when they see me struggling and ask if I am alright.  I just say,  ” You do know I have spinal stenosis”  In doing all the workups over the years I was found to have osteoporosis and mild age related spinal stenosis.  I was always tickled by the phrase “spinal stenosis”.  It sounds so serious.  But I think it is more like getting grey hair.   That is my reminder to my family, that while the magic Sinemet pills do work pretty well, I do indeed have this PD thing, and am not the same as I was a before.

I am completely dependent on the meds.

Best regards to all.

Robert C.

 

[Robert]

Robert

What a word picture.  concrete ….asphalt rubble.

I can identify.

Good job.

Robert C.

[Robert]

Thank you Robert!  Well said.

Robert C

[Robert]

Hi Garrett

Good question.

I have stiff and slow Parkinson’s.  I have the problem you describe.  For me, every visit to the bathroom is a project.

Here is a story for you.

I have had bladder problems for 4 years and have had to wear pads.  All doctors presumed I had the garden variety of  old man prostate problems (I am now 66 yrs old).  I was on prostate pills for 4 years.

Things were gradually getting worse.  So my Neurologist referred me to a Neuro-Urologist.  After some tests, I had an appointment for prostate surgery.  The day of the surgery the Urologist told me and my family that we may not have the surgery because a further review of my earlier Urodynamic study and my neurological file along with his professional “wisdom” was telling him that perhaps my problem was PD related and not physical.  He did a scope and ultrasound scan and found that my “liquid plumbing” system was indeed in very good shape for my age.  Thus, the problem was entirely neurological.  The sphincter at my bladder exit port was no longer in routine “automatic” mode.   Just like it does with our walking and such, this PD thing interferes with the autonomic actions of our bodies.   At least my normal mode is “slammed shut” as opposed to “always open”, which I have read is sometimes the case.

I have to reserve 15 to 30 minutes to empty my bladder nowadays.  I also have a prescription for catheters which I have not had to use regularly, yet!

That was the only thing the doctor could prescribe for my situation.  A catheter.  No magic pills this time.

I now know that bladder problems is one of the early signs of Parkinsonism and my Neurologist says that some PD people have these problems and some don’t.

Well, while the physical aspects of the PD progression do not get better, at least the stories do get more interesting.

Best regards to you.

Robert C

[Robert]

Good question Mary Beth

Hello to Robert Harris from another member of the “Robert” clan.   My son is the sixth Robert in our family tree (we do change the middle names, so no Roman Numerals after our names.).

We seem to share a lot on this PD journey.  I too take pills 5 or six times a day and seem to have been issued the same “plumbing” system that you describe.  And I too show evidence that PD bowel problems can interfere with Sinemet absorption.

One difference so far is that my doctors have an overall theme that PD is a dopamine deficiency disease.  PD people need more dopamine.  That’s the only med I take directly for the PD.  2 regular pills 5 times a day plus some overriding extended release pills on top of the regular doses and 2 extended release at bedtime.  They have told me that the other Parkinson’s pills have too many side effects and after tying them over the years, they avoid them.  I do take a medication for low blood pressure which is a feature of my PD.  I am in my 15th months of taking any meds. And when I am on I am able to work full time and have convinced myself that no one knows I have PD.

It took a full year to determine my correct dosages and timing.   We made adjustments 6 times over the past year.

I had a period last summer where I thought my pills just completely quit working.  That change was so sudden that I now wonder if it wasn’t caused by a change in supplier like you described.  My doctor’s response to that was to triple my dosages with timing and amounts.  My PD obviously needs a higher dosage as my correct treatment.  But the sudden ineffectiveness of the meds made no sense.   I think a difference in the “potency” of the PD pills between suppliers is a logical explanation.

I never had much of a tremor.  I am a stiff and slow PD person.  Without the pills I could not function.

Best regards to all.

Robert C.

 

 

 

[Robert]

PS

Or hemorrhoids!!  Don’t want to talk about that either!!

Why can’t they just send us the pamphlet with the not so nice things about PD, and, while they are at it,  about this getting older thing too, and just get it over with!!

Oh, and the easy solutions to all of them too, of course.

Robert C.

[Robert]

Hi Folks,

I admit to daily Miralax.  Otherwise, don’t want to talk about it!!

Robert C

[Robert]

Garrett

For what it is worth I share the following.

I see some similarities in our PD.  I never really had a tremor, just really stiff and slow and unsteady.   It took over a year to finally get my “pills” right in regards to the dopamine deficit.  Part of my medication solution was to make sure I have 24 hour 7 days a week full Sinemet coverage.  We also added pills to deal with low blood pressure caused by the PD and the high Sinemet dosage.  My doctor said some of my fuzziness in the afternoons was because of lowered blood pressure – Orthostic Hypotension.  I never had dizziness or falls from low blood pressure, just a feeling of brain fog and just not feeling right.  Those low blood pressure pills help.  But I believe the one last medication that the doctor added really helped me to confidently get back to my normal activities.  It has brought my former “sharpness” back.  Two Cymbalta a day.  (I had never taken such pills before – I am 66 years old). It took about thirty days for them to kick in, but they have helped to restore some of the sharpness that was fading away.  I still work 10 hour days running a financial firm.  I clearly need lots more sleep now than I ever took time for before the PD.  But I am back to my old work schedule now and feeling good about things.

Thanks,

Robert C

[Robert]

Garrett and others.

FYI.  I was diagnosed 19 months ago and just started meds 14 months ago.  So I have jumped up to a higher dose of Sinemet pretty quickly.   I was a stiff and slow mess until we did decide to flood my system me with the magic Sinemet pills.  It is working for me.  No dyskinesias from the Sinemet, only when I am late with the pills.

Robert C

[Robert]

Garrett and others.

Interesting topic.

For what it is worth, here is my story re:  Sinemet CR.  (Sinemet is my shorthand for Carbidopa/Levodopa)

I was recently having wearing off before and after my regular Sinemet times and my doctor added 4 Sinemet CR 50/200 pills on top of my regular 5 times a day 2 Sinemet 25/100 doses.   As follows:  1 Sinemet CR 50/200 with my regular 2 Sinemet pill dose at 6am.  1 Sinemet CR 50/200 alone at 6pm.  (My regular pill times are 6am, 10am, 3pm and 8pm.) And then 2 Sinemet CR 50/200 pills at bedtime.  I also take 2 regular Sinemet pills at around 2 or 3 am when I always wake up each tight to empty my bladder.  This has completely solved my wearing off problems.  I think what this means for me is that I needed more Sinemet in my system, but just taking more regular Sinemet, ie. 2 1/2 or 3 pills at a time could not be used properly.  The delayed reaction of the CR pills smooths out the Sinemet in my system just enough.  If my timing is off, this does not work.  But if I keep to the schedule, it works really well for me.  I think I just need a certain amount of Sinemet in my sytem 24 hours a day.  Not just during waking hours.

Thanks,

Robert C

[Robert]

Hi Jennifer

I am that October gentlemen.

I basically have been told I have slow and stiff Parkinsonism (Likely Idiopathic Parkinson’s Disease.  A little hedge there in a definitive diagnosis that is slowly evaporating with the passage of time).  I really never had a tremor.  First symptoms were my body seemingly forgetting how to walk without having to think about every single step.  I was diagnosed with Parkinsonism in May 2018 and told that no meds were necessary then and come back in a year or so.  In August 2018, at second opinion, I was told Parkinsonism (possible MSA!) H&Y State 3, and start on one of those other meds.  In October 2018, at third opinion, diagnosed with Akinetic Rigid Parkinsonism, H&Y Stage 2 1/2,  and started on the Sineme(carbidopa/levodopa).  I am now a patient of the third opinion doctor’s group.

My doctors believe that Parkinson’s disease is a dopamine deficiency disease and replacing the dopamine in your brain with carbidopa/levodopa is the best treatment for it.  They told me there are other pills that are used to help with the carbidopa/levodopa pills to be more effective and there are other pills that help the body to use the dopamine that it still has, but if your body can stand it and it does not cause more problems, then carbidopa/levodopa has been shown over 50 years to be the most effective treatment for PD.  I have noted in other places in the forum about my journey to arrive at my current regime.  I started Sinemet November 2018 on a relative low dose.  I am now taking 2 25/100 carbidopa/levodopa pills 5 or 6 times a day and 4 50/200 carpidopa/levodopa controlled release pills on top of the regular pills too at strategic times , to be sure I achieve total 24 hours a day coverage.  I also have low blood pressure issues, so I take a midodrine for that.  I also found that have had severe bladder issues caused by the Parkinson’s.  I now “take” self-catheterization  for that!  The final pills I have added to the mix are two Cymbalta pills a day to help with keeping “sharp”, as I still work 10 hours days running business dealing with financial stuff.  All of that being said, I now feel I am finally properly medicated.   It took 7 visits with my Movement Disorders Neurologist over the past year to adjust the meds up and down and such to get to this state.  I had a scary month last summer when the pills seemed to quit working.   We tripled the dose the next visit which showed I just needed more of the magic pills.

In summary.  My doctor’s plan seems to be this —  Flood the guy with Sinemet (carbidopa/levodopa) until it works.  Figure out what the other symptoms are that need to be treated.  Treat the other symptoms.  And just get on with it.

Of course, I am waiting to see how long this works.  But I actually feel pretty good at this point.  Finally.

Required disclaimer.  Every PD journey is specific to that person and follows a path unique to that person.

I believe this forum serves us all well when we are able to see what the different PD journeys are.  To that end I am happy to share what I think makes sense to share with others.

Best of luck to you on your journey.

Robert C

[Robert]

Howdy Folks

It just dawned on me that I have had three of four days or so that I have felt sorta normal.   Sorta of how I expected to feel about this far out from diagnosis and being on Sinemet.  You know, the honeymoon period like all the books say you should expect.  After all , this is supposed to be a slowly advancing thing, this Parkinson’s.  This is the first time I have felt this way since diagnosis.

Let me tell you how I think this finally happened for me.

I was first diagnosed in May 2018 with stiff and slow Parkinsonism. (All doctors I have consulted are Movement Disorders Neurologists)  Dr. said really early and no meds needed and see you in a year if you want.  2nd opinion in August 2018, just three months later.  HY Stage III and possible MSA!   Should start some meds but not sinemet.  (I did not disagree with the HY Stage III because it correlated with how I was then. I really fell off the Parkinson’s cliff in those three months).  But I knew that the MSA just did not make sense to me.) 3rd diagnosis in October 2018.  Slow and Stiff Parkinsonism and HY State II 1/2.  (This diagnosis made sense to me)  Started on Sinemet.   Obviously, I signed up with the 3rd opinion folks.

I also have low blood pressure problems and bladder problems.

From November 2018 through October 2019 we upped the Sinemet and lowered the Sinemet and upped the Sinemet and added low blood pressure medications and bladder/prostate meds.

Blood pressure.  First Florinef and now Midodrine.  Florinef works by messing with your water storage and such and blood volume.   Midodrine works by making your vessels squeeze when you stand up.  I felt like I was drowning with Florinef.  The switch to Midodrine worked just as well for me in raising my standing blood pressure just as much as the Florinef without the drowning feelings.  So that is what I am taking now.

Bladder problems.  I was having male bladder problems which is apparently very common in Parkinsonism.  It was presumed that I was having prostate problems since I am a 66 years old guy.  So I was given two prostate/bladder pills.  Both of which lower blood pressure!!  And I was referred to a Neuro -Urologist who did some very interesting bladder tests that I am sure the rest of the world don’t even know exist!  Result was that there was a significant obstruction causing retention etc etc.  Most often such results to those tests are caused by prostate problems.  Prostate surgery was scheduled!   On the day of surgery, the Neuro-Urologist, at the pre surgery conference, said he wanted us to be prepared to not having the surgery because he now was feeling that this could be a neurological issue and not a prostate issue.  He said this was just a professional judgment he was considering after carefully reviewing my file, other PD exam files, and the earlier tests.  He instincts were correct.  At pre-op testing, I had a very interesting ultrasound procedure and very interesting cystoscope procedure which showed the prostate and bladder parts of my plumbing was not only normal but actually better than normal for my age.  So no surgery and, by the way, you didn’t and don’t need any prostate or bladder pills.  The problem was sorta like the general Parkinsonism thing as regards to walking and moving etc.  (I never really had much of any tremor, by the way).  The exit valve of my bladder emptying system is not communicating well with my brain.  So all those bladder and prostate pills that lower blood pressure were stopped.

By the way.  In case you haven’t figured it out by now.  When I say I had a very interesting test, I am giving you a hint that it the type of test that when they tell you what they are going to do and after they have done it, all you can say is “Oh my goodness!”

That brings me to where I am now on my medications.

My Doctor’s consistent theme is to treat the problems.

For the stiff and slow Parkinsonism.  Up the carbidopa/levodopa until it works.  I now take enough Sinemet and Sinemet Cr to get 24 hour coverage.  10 to 12 25/100 Sinemet pills  plus 4 50/200 Sinemet CR pills per day.

For the low blood pressure.  Midrodine three times a day through mid afternoon.

To fight apathy and lethargy.  I now take Cymbalta twice a day.

For the bladder a very interesting solution.  I now am familiar with self-catheterization!

If I am late with a Sinemet dose, I really really know it.  As others have said, I cannot have food in my stomach for the Sinemet to work for me.  That means no food 2 hours before and 1 hour after taking the pills.

So that is the story.  Flood the guy with Sinemet and just get on with things.  It apparently is working now.

Let’s see how long this works.

Thanks and best wished to you all.

Robert C.

 

 

 

 

 

 

[Robert]

Jean

As I am sure most of us forum members have become aware of over our time here, we have you and Ally to thank for establishing the wonderfully respectful and thoughtful tone of this forum.

Thank you for caring and making all of us feel welcome.

Happy New Year to you and yours.

Robert

[Robert]

Hi Ronald.   Interesting question.

I am 66 yrs old diagnosed 18 months ago.  Probably really in my 3rd full year. Been on sinemet for 12 months.

The past six months I have been dealing with off times before and after all sinemet doses.  This was and still is worst around my 3pm sinemet dose time.

To deal with this, my doctor has me using both

Sinemet and Sinemet ER in a way that seems to be helping.

Of course, this is what we are tying for my particular version of the PD thing.

And we all know that we each have our own particular version of this PD thing so I

don’t know if what works for me would work for your mother.

Best of luck.

Robert