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.

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 r…[Read more]

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 v…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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 bac…[Read more]

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 ta…[Read more]

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 cr…[Read more]

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…[Read more]

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

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…[Read more]

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.

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…[Read more]

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…[Read more]

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.

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 symp…[Read more]

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 st…[Read more]

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…[Read more]