[Robert]

Dick,

I always think of what I really want to say about an hour or two or sometimes a day or two after I first think about it. One of my particular Parkinson’s symptoms nowaday!

I meant by my first post is that for our loved ones our diagnosis is heartbreaking and they really struggle with figuring out what to do about it. For our acquaintances, not knowing the right thing to say or do is just par for the course – we’ve all been in that situation I suppose. But for our professional caregivers, Doctors, Nurses, etc., who are dedicating their lives to helping patients with diseases for which their is no cure, we must be especially understanding and aware.

For this to work over the rest of our lives, we will all eventually become caregivers to our caregivers.

Thanks,

Robert C

[Robert]

Dick,

I think we all eventually become caregivers for our caregivers!

Best Regards

[Robert]

Just adding my two cents to this revived thread.

My PD Doc prescribed 2 3 mg melatonin capsules and two carbidopa/levodopa CR 50/200 tablets at bedtime.  Most nights this works for me.  Before this I found my self too frequently still trying to get to sleep in the AMs.  I still never feel really rested or refreshed in the morning.  But I have at least slept which allows my bodily functions to get some needed restoration.

 

[Robert]

Hello all,

I was finally diagnosed in 2018.  I think now I had some symptoms since 2015 or so.

Here’s my list.

1  Extremely slow and stiff.  Treated with 2 Sinemet (Carbidopa/Levodopa) pills every three hours during the day.  I never had much of a tremor.

2  Bowel problems.  Currently treated with Ducolax soft chews every few days.

3  Urinary problems.  Recently solved when my brain completely quit talking to my bladder.  I require an indwelling catheter and collection bag now.   The catheter is replaced every 4 weeks by the way.

4  Low blood pressure.  Pain in neck and shoulders and light headed  Treated with Midodrine tablets.

5  Mild Cognitive Impairment.   Muscles aren’t the only thing that get really slow with PD.   Daily Cymbalta pills help with this.  Of course, I had to retire from working a few years ahead of plan too.

6  Vision problems.  Loss of convergence at less than 3 feet.  Solved with adding prisms to eyeglasses.  No more tri-focals now.

7  Insomnia.  Treated with melatonin at bedtime and Sinemet Controlled Release pills at bedtime.

8  Pain and muscle cramping.  Cymbalta helps with pain.  The addition of Comtan (Entacapone) pills three times a day helps with the muscle cramping that comes from the Sinemet wearing off.

9  Lost sense of smell.   No treatment.

10  Becoming overheated and sweaty very easily.  No treatment except air conditioning.

11  Low heart rate occasionally.  In the low 40s beats per minute when Sinemet wears off.  May need a cardiac pacemaker in future.

12  Cannot operate in crowds regardless of my medication situation.  The Parkinson’s freezing of movement occurs around too many people.   Too many sensory inputs I presume.

13  Cannot multi-task.  Nothing solves this problem now.  Except good lists and a very helpful family.

14  Probably some other things to list, but I can’t remember them now.

Best regards to you all,

Robert C.

 

 

 

[Robert]

Good topic.

I am September 22.

On my last 4 birthdays I have felt that I am now really on Plan B.

I thought I would stilkl be able to do so many other things at my age.

But it is what is and you just gotta figure out other things to do!

And no, sleeping all day doesn’t count!

Things could always be worse.

Robert C.

[Robert]

Howdy

I keep all my meds together in a small retangular plastic basket in my bathroom.  No youngsters visit our home so no need to worry about that.

I also always have my day’s pills plus another half a day’s pills with me in a pill container in my pocket.  That is all that I can fit into the container.  This is in case I am not able to return home in the evening for some reason.

I also always have ready several liter size water containers so I can grab one if I leave the house.

I am on a 3 hour C/L pill cycle nowadays plus low BP pills and mood pills.

If something causes me to be out of my home for some time, my family can just bring the plastic basket to me and I will have what I need.  Also, nowadays, I always get a 90 day supply of all of my meds at each renewal.

Thanks,

Robert C

[Robert]

Hello all

I was beginning to have nightime sleep acting out episodes.

I was told to take two 3mg Melatonin at bedtime and it helped right away.  Perhaps I get to a deeper sleep sooner?   I now also take Carbidopa/Levodopa Controlled Release at betime too.

Thanks,

Robert C.

[Robert]

Mary Beth

This past summer, I was getting cramping in feet and calves and then a weird “Popeye” muscle cramp in one of my biceps.  It looked and felt like a tennis ball.  My doctor solved by changing me to a three hour pill regime and adding one extended release carbidopa/levopa pill to each dose of regular carbidopa/levodopa (I take two regular pills) to keep the dopamine level up and it went away  When my magic pills are wearing off my “popeye” bicep is a first sign.  I now take the magic pills six times a day.

Thanks,

Robert C

 

 

[Robert]

Hi Robert Li

Another member of the very large “Robert” club.

Thanks for the info regarding Erythrocyte Manganese vs Magnesium blood tests.

I will look into this.

My Vitamin D levels have been chronically very low.  I take daily pills for this and we monitor it closely.  Also, my PD doctor has had me on something called Folbic for the various vitamin Bs since the start.

Thanks,

Robert C

 

 

Thanks again.

Robert C

 

[Robert]

Good question MaryBeth,

I was diagnosed with Parkinsonism in May 2018, and got a more definitive diagnosis at my third opinion (and current) neurologist in October 2018 which is when I started the magic pills.  At the time it was clear that my symptoms were far advanced for such a new diagnosis.

After diagnosis, I frequently noticed that I was having so many more PD problems than those other guys I know who have had the PD for many years.  They seemed to be doing so much better than I ws.   I now believe that I have probably have had PD longer than some if not many of them.

In the 3 and 1/2 years since then, I can now clearly see that I had some signs 5 years or more years prior to that.  I had been treated for nonexistent BPH 5 years before my PD diagnosis.  After the PD diagnosis I went through the elaborate Urological studies and found that I was having the beginning of PD bladder problems all along.  Not BPH.   That is just one of the long ago symptoms.   I also had an unexplained feeling of tiredness all of the time back then too.  The BPH pills were probably lowering my blood pressure at times throughout each day, which is what they can do to someone with PD.  I remember complaining to my internist at my annual physicals ” I did not expect to feel so old at my age”.  I would have been in my middle to late 50s then.  After many tests, we never could find the answer.  So I was told to not work so hard and take more time off or sleep more, etc.  To be someone other than my self suddenly in my 50s.   I now believe I was feeling the Parkinson’s slowly surfacing without knowing what was going on.

With all of that, I think it is fair to say I am probably in at least my 8th to 10th year of Parkinson’s Disease.  That is how far back I can remember unexplained feelings of something being “Just not right with me” and the doctors not being able to find anything.

Thanks,

Robert C.

[Robert]

Hi Ally,

I have a fancy PD doctor at a fancy medical center that I travel to see when telemed will not do (which it has for the past year and a half).  Which means I do not use the local neurologist who has PD on his list of diseases he covers.

Early on, when I told my family physician what my meds were and then the frequent changes in dosage and timing, he asked if I wanted a second opinion because how I was being treated was not similar to his other patients who had PD and were being treated by the local neurologist group at the hospital.  I told him my current fancy PD doctor is my third opinion neurologist, the one who got the diagnosis right, and I trust him and his PD treatment philosophy completely.

With that, I now appreciate my family doctor for fully cooperating with me and my fancy PD doctor in making sure I get proper overall care.   He can see that it is working well for me by seeing how when I am having problems my fancy PD doctor so far quickly knows what to do make things better for me.

Where I live here in northern Illinois, most all of the medical practices have been bought out/up? by a few big Hospitals and their giant medical groups.  I can’t blame them, all of the required computerized reporting and recordkeping the new laws require of the doctors in order to be reimbursed by Medicare etc. has made it financially impossible for most doctors to have independent practices.  A four doctor practice has the same administration requirements and costs as a 50 doctor group.  But the style of care that the hospital controlled physician groups offer, now that they have monopoly status, does remind me of what I remember sick call to be when I was in the Navy 50 years ago.  You get in line and wait to be seen by whoever has duty that day.  You are sent somewhere to have a test some day and you wait for the results.  Wait wait wait.   I have had to sign up with an independent Concierge style internist doctor group to get the individualized personal attention that I think I require to get along properly with my PD.  I know that this is not something that many or most people have available to them.  I am thankful that I do.

I suppose as I age, I will need to somehow include a local neurologist on my care team especially if I ever need to be hospitalized and am not able to be my own care advocate.  My personal physician has told to me that he will make sure that it will go well when I do.  My fancy PD doctor has told me that phone calls and Skype easily allow him to be a long-distance consultant to my PCP doctor if needed.

So that’s my story.

Thanks,

Robert C

 

 

[Robert]

Hi folks.

It seems that this fluid part of my plumbing has a mind of its own now, like so many other things that rely upon dopamine to function normally.

My full bladder and it’s exit spigot don’t like to talk to each other some days.

So, I have these things called catheters when I absolutely need them.

I no longer have the routine feelings and such in my bladder etc. that we all learned to rely on before PD so I do not have a predicable pattern.   At times I cannot start and stop at will if you know what mean.

It is a nuisance because of the time it requires some days.

I was diagnosed just short of 4 years ago.

The doctors presumed I had normal old man prostate issues that were causing all of this.  I went through some very very interesting tests and procedures that included ultrasound devices placed in very interesting places and found that all of my problems are neurological and related to the Parkinson’s.  Just another box on the PD symptom list that I got to check.  I do not recommend it to you other PD people if you are thinking of checking that box.  Avoid it!

But, I never really had much of a tremor and certainly never do now on the magic pills.  So there is that.

Thanks,

Robert C

 

[Robert]

Folks,

I promise this post does have at least a little bit of bizzare symptom meme to it.  It is a really long post.  I have finally given up editing it so that I can go to sleep.  Forgive any repetitions, syntax errors, or typos.  I do have spinal stenosis, you know!

Also, I am pretty sure I warned everyone when I joined this forum a while back that I sometimes had a somewhat unusual sense of humor, which has been begging to be exercised for a while.  So with that in mind, please accept the following with the best of humor.

For some reason, when I couldn’t easily get to sleep the past couple weeks (not that this is something new mind you), I found myself thoroughly enjoying watching the US Track & Field Team Olympics tryouts which were shown on my TV in the late late evening.  I think they were held a couple of time zones West across the country in Oregon.  And I am sure you are all now wondering.  Yes,  I did indeed run track in high school, if you can call what I did running.  I think I  finally got a fifth place ribbon at one track meet in some sort of B team relay event (not the hurdles) as my crowning achievement.  I did enjoy it though.  Our team needed a third “hurdler” so I was drafted to spend a couple years trying to figure out the concept of how a not so tall kid can compete in a hurdle race in any rational way.  I never did really figure that out.  I do  remember at one point the coach telling me to be careful to not injure my fellow team members when I was doing my usual knocking over of the hurdles instead of jumping over them!  The coach told me he really needed those fellows for the upcoming baseball season and for next year’s basketball team and he was worried for their safety.  You know the type,  the tall long-legged lanky guys.  They also let me be the teams’s third long jumper too!  I was what would be described as a very earnest high school athlete.  At best I was a very late bloomer athletically.  In my late twenties I could actually run for exercise.  But it took me all of that time to figure it out.  Not born with this type of talent for sure.  Thankfully my military service was as a musician for which I was much more talented and thankfully a much, much quicker study.  So no athlete was I for sure.

Anyway, all of the above has really caused me to have a really bizarre thought.  I believe with this PD thing now a part of my life I may have been presented with a second chance at athletics.

If it could be guaranteed that none of us would be injured, we should have a PD Olympics!  This make so much sense to me now, I have to believe many of you were thinking just the same thing!  Am I right?

We could have some uniquely PD events having to do with stiffness or tremor and stuff like that, I suppose, like who can take the longest or be the quickest at many things (some “events” that probably shouldn’t normally be discussed in polite society), but I am sure many PD people could excel at some of those type of events.  These events would be in addition to the usual events like pole-vault, long-jump,  100 meter hurdles and 400 meter hurdles, or even better, the 3,000 meter Steeplechase, and, of course,  the Javelin throw, Discus throw or Hammer throw.  I think you can stand still and do those throw events.  I would definitely try out for some of those.  That would be a riot.  (FYI. I am at the point now where I can barely figure out how to get my hands close enough to my feet to put on my socks or tie my shoes without falling over onto the bed.  But I keep trying.)  And high jump, most certainly the high jump.  Only those of us over the age of 65 would be allowed to compete in the high jump.  None of that 7 feet 8 inches or so I watched some young fellow clear last week by going over the bar both upside down and backwards.  I am sure we would be talking about 1 or 2 feet!  Maybe not.  Two feet seems awfully high to me now.  And that would be after the eventual winner had stood there and “thought” about it for a half hour or an hour or so.   I definitely think most of the events would be very very long.  And I can picture the sprints.  The starter yells “Runners take your mark.”  Then about 5 minutes later when everyone in a starting position, he yells “Set” and, of course, a few would stand up to say “what did you say”.  And then, about another 5 minutes later, when everyone is finally set and the  starter pistol fires off,  half of the runners are so startled they fall over backwards, even though they are all leaning forward waiting to start the race.  It will be a fun day for all!

The Hammer throw.   I think I would try out for that.  I recommend you Google it.  Definitely the Hammer throw for me.  I think you can just twirl around on one foot.  That’s sort of like how I change directions in a crowded room some of the time.  We all have new talents that we did not have as younger non-PD people.  I really think this is going to work.

To make this Olympics even better, the spectators would be only Movement Disorder Neurologists and Neurology students.  This would give them the chance to see how us real PD people actually move or not move when we are really really trying and no one is looking. (that’s a very good joke for those not reading closely).  Our very dedicated PD doctors don’t really get a chance to see us outside of their offices.  They only see us during our “Show Times” when we, and our family, are on our best behavior.  This would be good for them.   Maybe this PD Olympics could be held jointly with one of their PD convention things.

That would surely be the funniest, I mean funnest,  day or week or two for all of us.   Of course, there has to be some way for no one to get injured (what does it mean that I keep saying this over and over?) or this Olympics would only last an hour or so before all the participants are either on the ground or unconscious or, more likely, all just frozen in place staring at each other waiting for their particular version of PD to either decide what to do next or waiting for their particular version of PD to decide to finally let them decide what they already want to do!  A whole stadium filled with frozen mostly old folks in track and field attire.  What a mental picture.  Everyone would have to have a headband, of course.  You can’t participate in the PD Olympics without a headband.

Now about those “drug tests”  you hear about that those normal Olympic participants have to deal with.  I think we are going to have to be really really quiet about the PD drug thing ok?  If no one says anything about it I am sure no one will notice the weird rattles that come from those pill boxes in our pockets that occur with our every step.  Hey, I only have about 25 pills in mine.  That’s not so much, is it?  Let’s just agree right now that if no one brings up the drug test thing we may just be able to not have the subject be an issue.  Let’s all just agree to agree about that.  You know, if you don’t talk about it out loud, it is not real.  Not that any of us has ever had a thought to do that with a new PD diagnosis or some such thing.  Right?   There is absolutely no reason to think it won’t work for this issue too.  This does raise a question for some of the longer running events where surely some participants might need to stop to take their “meds” during the event because I don’t think an off time at the wrong time will work for this Olympics thing.  I am not going to try out for those events.  I am on a short “meds” refill regime nowadays. I think you could pretend to fix your shoe or something.  I am sure that would work.  Hide the pills in your shoe!  Problem solved.   Remember to not talk about the meds!

As all of your posts above clearly show, we PD people are all so alike and yet so completely different.  I am sure that it is obvious to all of you that none of us would have to start training for these Olympics because we are all already constantly training harder than we ever have before learning how to deal with our PD thing.  This is going to be easy for any who want to participate.  Don’t you think?  Easy Peasy!

I told you I have a weird sense of humor.  If you can’t have a sense of humor about this very very strange thing someone decided to call PD and then left under our pillow one night, then I don’t know how you cope with your life with not sleeping with a pillow ever again.  That would not work for me.  You have got to laugh and get on with it.

I am coming to believe that it is kind of sad that everyone else has to just continue to live the last parts of their lives with the same old body and mind they were issued some many many years ago and that they have to spend so much time and effort looking for new and interesting things to do.

We PD folks have been gifted the opportunity to experience the always new and interesting and unexpected without ever having to work hard at it.   We don’t ever have to plan to find these things.  They just show up every day without our even asking.  It’s like serendipity or something.

Now the Olympics!   Mere mortals could not think to qualify after a certain age.  Except maybe for those few folks who can own an Olympic standard jumping horse or maybe the archery or pistol competitors.  I know old folks can be really really good at shooting at stuff.  (Oh, that’s right.  The tremor thing some PD folks have.  Oops!  Sorry!)  (Can you  please keep on task and stay focused?  Oh yes,  Sorry about that too.)

A chance to be an Olympian.  Yes.  Now that’s the ticket!

I know this is just a weird thought from someone with some very weird “plumbing” problems, “bizarre” balance problems, very “interesting” brady-phrenia problems (I seem to remember that has to do with thinking right?  Just so you know, I have been very lucky to still have a really fabulous memory – even if it isn’t very long.).   And I am also now having to take a larger dose of the magic pills every three hours just to be able to pretend to be the least bit normal.  No complaints, this is just a normal PD journey. Right?  Right?  Yes, yes, of course it is.

Let me know if anyone has the talent to organize the PD Olympics and will get this thing going. Since we all have PD, I think I am safe in saying “No hurry”.   Next year will be ok.  It will give all of us something to try to remember, I mean something to look forward to.

I will certainly try to qualify for several events, so I can show off my new me!    Hammer throw,  High Jump.  Could “Falling Asleep at the Drop of a Hat” be one of the the new events?  I think that could be a really good one of the unique PD events.  Normal non-PD people can’t do that very well.   I am already really really good at that.   I received a gift of the remarkable talent for that along with my PD version gift.

I live in Illinois at about 600 feet above sea level.  If I do this Olympics thing, should I consider a move to Colorado.  I heard that training at altitude is a really good idea and all the good USA Olympic runners do that.  I am sure it would be no problem to sell a house, pack up everything and move across the country, buy a new house, find new Doctors, places to find food, get the car serviced, get dental work.  Hey, no problem for us seasoned PD people.  Right?  Right?  Is that laughter I hear?

(If my wife reads this, I think she will call our son and they will have me committed.  Definitely take away my car keys!  Or my computer keyboard!  I am having fun writing this.)

Let’s see.  1.  PD Olympics.  2022?   Or 2.  Figuring out what to eat tomorrow and when to eat either before or after taking my meds so they will still work?  Oh no, I can’t decide what to do!  Too many choices!   Ahh!  Now, where did my wife get off too?  Thank goodness she is really good at deciding what we really should be doing  today.

Us PD people can still dream!

PS.  I have had to recently retire three years earlier than my Plan A because of my PD version.  That is why I am trying to figure out what I can easily do now that my PD version is participating in my day to day life.   Being an Olympian was one of the first things that came to mind.  I know some of you old hand PD people are laughing at me because I am probably so late with coming upon this obvious thought.  Please give me a little slack.  I only got my PD pillow gift a few years ago.  I am still discovering all wonderful things that comes with it.

Best regards,

Robert C.

[Robert]

Thomas and Robert Li.

You both make a very important point. We always have to be careful to not automatically attribute all of our ailments to our Parkinson’s.  And eventhough I consider the carbidopa/levodopa pills to be “magic pills” for my Parkinson’s,  that doesn’t mean they are the correct treatment for all of our ailments.  I have been taking these pills for about three years now and I still have grey hair!

Best regards,

Robert C.

 

 

[Robert]

Hi John.

Good question.

I was getting leg cramps often in the night.  I am now on carbidopa/levodopa every three hours during the day, along with one extended release pill added to every other dose,  and I take two extended carbidopa/levodopa at bedtime.  I sometimes have to take the regular carbidopa/levodopa during the night if the leg cramps keep me awake.   This helps me to get enough sleep at night.  I still am very stiff when I awake.

Don’t know if this helps, but it is what my Dr. recommended when I complained about nighttime leg cramps.

Best regards,

Robert C.

 

[Robert]

Good evening all.

Regarding PD books.

If there is a book out there that is available to us consumers about Parkinsonism, Parkinson’s Disease, MSA, Lewy Body Dementia, or Parkinson’s Disease with Dementia that I have not read it is only because I don’t know about it.

This list may indeed be a clue that at not quite three years years in, I have skipped the honeymoon period and am now trying to figure out what the heck PD road I have taken!  I clearly missed the road signs when I made some of the turns on my journey.  I am currently enjoying a few good hours today as I write this.  Nevertheless, when asked, I continue to say I am feeling marvelous.  Quite the thing, this PD isn’t it?).

In my opinion, the most thoroughly comprehensive, yet easy to read, books about Parkinsonism or Lewy Body Dementia are by J. Eric Ahlskog, M.D. Ph.D., who is a clinician at Mayo Clinic in Minnesota.  They so remind me of what I found to be the two best science explanation books I read when I was younger, General Chemistry by Linus Pauling from about 1970 and Understanding Physics by Isaac Azimov from about 1980.  Both books were amazingly comprehensive, but were written to be read and understood by anyone with a basic education.  Dr. Ahlskog’s books are the same.

I think Dr. Ahlskog’s books may have had several editions and may have had different titles and I just can’t find them right now on my Kindle reading device.  But I am sure anyone can find them by a search of the author’s name.  He is an old guy, in his 70s I think, but still sees patients the last I heard.

Best wishes to all on this PD journey.

And a most Happy Easter to all.

Robert C.

PS.  Pardon any typos.  Part of my current PD issues are that it took me a very long time to type the above and to then edit it for the dozens of typos and syntax.

 

 

 

[Robert]

You see! If I had just spent more time, I would have caught the two signatures!!

If us PD people can’t laugh at ourselves, we are gonna have a tough life. Right?

Robert C

[Robert]

Very good topic Mary Beth,

I suspect it is hard for some to share personal situations on this topic. You can’t undo what you might type if you have second thoughts on what you have sent. And we are all in a “let’s see how it goes” mode and not a “presume the worst” mode as a way of coping with this Parkinson’s visitor in our lives. This topic is not one that any of us want to have to discuss, especially early on because it falls into the latter category.

I will say this about myself. I am into my third year of diagnosis of “Parkinsonism – “likely Idiopathic Parkinsons Disease”. Which I have always thought has been a little hint from my doc that I need to keep the possibility of a not so smooth course for my brand of this strange affliction on my list for planning purposes.

I am now finding that I take two to three hours to do what I once thought I could easily do in 15 or 20 minutes.
I am talking about repetitive work related tasks which require care and thoughtfulness. I am a professional in the financial world. Or was…

So, have had to suddenly retire about three years ahead of the plan I was on just a year ago. I “feel” the same and I “think” I can do what I could before. But I clearly cannot. It is very difficult for those who know me to understand what I am going through. To them it just does not make any sense. To them, while I clearly don’t walk the same, I do talk the same, if you know what I mean.

This is not the end of the world, just a variation to the Plan. Onwards and upwards!

For what it’s worth.

Thanks to all for sharing and best wishes to all.

Robert C.

For what it’s worth.

Thanks,

Robert C.

[Robert]

Phil

My wife’s 93 year old Danish grandmother had the greatest phrase.

“I have a very good memory.  It just isn’t very long.”

Best regards.

Robert C.

 

 

 

[Robert]

Beth and Garrett

Thanks for your stories.

I am an allergy person too Beth.

Garrett.  So the COVID caught one of us PDers. You seem to be of the type to have decided to not be a victim of the PD visitor who decided to never leave.  So you know you can get through a visit by a tourist like the COVID.   Good example for the rest of us.  I hope your story keeps on being a visit by a tourist who will move on after a bit.

Best regards,

Robert C

 

 

[Robert]

Thanks Cemal and John for your thoughts.

I agree that thoughtful carefulness is a good plan for these times.

It does seem from the sparse response to this topic that us PD people do not seem to be COVID magnets at least.

That’s a good thing.

PS.  Is it just me, or is anybody else as tired as I am of 2020?

I am looking forward to a fresh new year in a couple weeks.

Robert C

[Robert]

Thanks Jacque,

I appreciate knowing there are others out there who know what I am talking about with this tinnitus thing and this PD thing.

Robert C.

[Robert]

Ah,  the ol Tinnitus question, Ally.

For those of you who don’t know my writing yet, I sometimes think I can write humorously.  So just read on and bear with me.   I do have spinal stenosis, you know!

This topic of tinnitus, unlike PD, where they are still a bit shy of looking bored when it discussed,  is when my usually very nice and sympathetic family doesn’t hesitate for a minute to tune me out and look at my like I really am crazy.  Having to believe that I have this PD disease with no test or cure and every case is different is real is one thing,  and I guess they have been convinced it really is a thing I have to deal with.  But believing that I have this mysterious Tinnitus thing is just too much!

I have had severe tinnitus for as long as I can remember.  I cannot remember not having it.  I am 67 this year, so it has been with me for at least 30 years.

How loud is it?  When I describe to my movement disorders doctor or my ear, nose and throat doctor how loud it is, and even my audiology doctor, they just look at me like I am crazy.   It is this loud.  My vacuum cleaner does not drown it out!  For those of you, like me,  who have had multiple MRI’s or CT scans, with all the strange and loud bombarding noises — it is louder than any MRI I ever had.   The MRI machine does not drown it out.   I describe it as a rabid choir of cicadas in the middle of my head.  If I put my hands over my ears, it does not affect the sound.  It is obviously not a part of my normal physical or mechanical hearing anatomy.  It is a brain phenomenon.  It is just always present in the middle of my head 60 minutes of every 24 hours of every 7 days of every week.  It is there in my sleep.  Again, I have had no doctor ever react as if they believe me when I describe it to them.  Not a one.  By the way, I also have severe hearing loss in both ears and wear powerful hearing aids.  I cannot hear an ambulance or fire engine siren while I am driving my car without my hearing aids.  I cannot hear the phone ring without my hearing aids.   I have lost all of my high frequencies.  I do office work now.  In another life I actually made a living as a musician playing orchestral French Horn and also occasionally Double Bass.  And then the electric bass in other groups, which was obviously a bit louder and tougher on the auditory system than the unamplified instruments.  I probably did damage my ear anatomy from that.  But this Tinnitus From He _ _ came to me years later, after I started my professional life providing financial services to people.  I have always wondered if my brain was trying to replace the missing high frequencies and got so confused doing it that it left me with this sad result of it’s failed experiments.

So, I guess the answer is yes, I definitely had tinnitus before my PD diagnosis two years ago.

For those who are wondering, the cicada choir is just Altos.  There are no Sopranos, Tenors, or Basses.  So it is kind of boring too.  I am so used to it that I am able focus and concentrate and not have it interfere with my activities.  Most of the time!  Sort of like PD when the meds are working.  There are times when it overwhelms and you have to figure a way to cope.   I think there are some times when my Tinnitus causes me to forget that I have this PD thing!  Another condition for the famous hot bath therapy treatment, don’t you think?

How did I do in describing it?

PS.  I spent my high school years in Southern Illinois, way down there by Cairo and Kentucky, where they speak a very interesting version of English.

They (and I)  would pronounce this medical term as   “ten EYE’  dus”.  More of as an industrial strength word.  Up North, where I now live, I hear most folks pronounce it as “TIN’ ah tis”.   Which I consider a very modest, kind of passive, off hand kind of word.

If you had what I have,  you would laugh when you hear the word pronounced as “TIN’ ah tis”.  That is a weak word to me and certainly is spoken by someone who has no concept of this thing called tinnitus!

Hey, that’s sort of like PD, isn’t it.  If you don’t have it, you don’t really have the slightest clue of what it is like to have it.

So, I am a member of the PD club and the “real” Tinnitus club too!

But, I am only 67, so by now I would not be surprised at all to find myself being kidnapped into, I mean invited, to join some other notoriously exclusive “clubs” during my journey through the rest of my life.

With PD, we all learn quickly that our individual journey is always a gong to be a bit surprising and to not be too surprised at the surprisingly surprising things that reveal themselves each and every day.

You now know where the Alto cicadas are for the other 12 years you normal folks aren’t hearing them singing in the trees.  (I know , I know, there are 13 year cicadas in just parts of the world.  Other places have annual cicadas.  In Northern Illinois we have 13  year cicadas.).  And yes, I have several times had my tinnitus when I have experienced the real cicadas in the tress.  It is quite something let me tell you.

Thanks,

Robert C.

 

 

[Robert]

wheat or oat bran