John Citron

I have mixed feelings about Telehealth. While they are convenient, meaning I don’t need to drive to my appointments in bad weather and fight the awful traffic on the way home for one, and secondly being at home they allow me to keep an eye on my elderly father who has some age-related medical issues of his own, I feel there’s a gap in the medical…[Read more]

My 88- year-old father, my brother and I came down with Covid-19 around Christmas time. We got it at our local ER after we brought my dad into the emergency due to dangerously high blood pressure and chest pains.

I started feeling lousy Christmas Day and isolated myself but unfortunately, it didn’t matter. I took the test and the results…[Read more]

I wear Velcro-strapped shoes instead of laced ones. This makes putting my shoes on and off easy and it doesn’t require me to fumble with the laces.

I also use a DELL All-in-One PC to display my sheet music. Using Power Music Professional and  a PDF reader, Xodo I can load  up the music and easily turn the pages by touching the display or s…[Read more]

I started around 2004, and was given a diagnosis in 2012 which became “official” in 2014 according to the US. Government when my disability became active.

Here’s my list.

— Tremors on my right side and internally when I’m off or when the meds don’t work well.
— Fatigue*.
— Vivid dreams
— Plumbing issues.

I can’t poop for squat most of…[Read more]

Alan,

Playing the pipes is awesome! A Scottish friend of mine learned to do that many years ago and loves it.

I agree the use of both hands doing two things is one of the best things for our coordination. Recently, however, on my bad days I can’t play crossed hands or play polyrhythms well, and sometimes other coordination issues appear. If I…[Read more]

I studied music since I was around 7 years old and continued my piano lessons up until 2017 including as a music major seeking a BA in piano performance. I never completed my degree program but continued with private lessons.

Today, I play nearly daily. I find it has definitely helped me keep up my motor skills with my hands and fingers. My…[Read more]

I play and practice my piano almost daily and put in about an hour give a take a bit on either side.

Piano playing is also good because it’s a whole-body exercise program and is not just moving fingers as many people think. Keyboard playing requires relaxed muscles, postural balance, in the case of piano and organ, foot and leg movements when…[Read more]

Massachusetts has loosened up its restrictions, but I still wear a mask. I have an autoimmune condition in addition to PD. After an issue with chronic dry eyes resulting in ulcerations and cornea surgery, I was diagnosed with Sjögrens Syndrome, and I’m one biomarker short from Lupus.

Having said that, I noticed overall besides keeping my…[Read more]

Ron,

It was like magic!

I went from clenching my fist and jaw with awful stiffness throughout my body, spasms, and tremor, to being able to move around. The very first dose allowed me to uncurl my hands and loosen things up a lot. The tremor subsided and I did indeed feel normal again. What’s interesting is I never showed any side-effects until…[Read more]

Clive,

You summed it up, we’re all different and this “disease” treats everyone differently which is why it’s always best to consult with our neurologists first. The seizures you have add in a different element into the pot here and you and your doctor are right for not wanting to put something else into the mix. There’s nothing wrong with…[Read more]

Kirk is right here. My neurologist/MDS said the same thing when I asked because I was put on the gold standard immediately over a decade ago. The first dose was like magic that worked well right away and there’s been no looking back. I did have to adjust the amount I was taking due to taking some other medication with it, but it still works just…[Read more]

KISS.

I ensure I take my medications consistently at the same time every day. Keeping to the consistent time schedule ensures that I minimize my off times because it smooths out the space between doses.

In addition to the consistent timing, I also count out the pills per day and put them into a small pill-fob that I keep in my pocket. By…[Read more]

I have learned the hard way to do things in moderation because I can’t do the things like I used to. I was one that used to work a 60-hour job plus go to school at night and study piano too, then come the weekends I was off and bike riding 50 miles or more during the nice weather. This doesn’t mean I still don’t do things; I just don’t do a lot of…[Read more]

Gary,

I wish you lots of luck with this. My recommendation is to get to a teaching hospital or clinic if you can where the doctors are more open-minded. I transferred from a local neurology clinic, now out of business we wonder why, to the famous Lahey Clinic which is affiliated with Tufts University. My current neurologist is the chair or dean…[Read more]

My sleep varies from day to day, or as I should say night to night.

There are nights when I can’t get to sleep fast enough and will zonk out and wake up the next day happy, then there are nights when I can’t do it and end up staying up and reading or doing something at my computer like use my Trainz program because I hate watching TV, besides…[Read more]

Hi Ally,

I sent you an email.

John

As a kid I was exposed to Chlordane, Malathion, and other garden poisons. My dad used to cover everything with Chlordane to keep the carpenter ants from invading our house and also used it in the garden to keep the rose beetles at bay. The Malathion came out when the tent caterpillars invaded the shrubs and pine trees. We also used to spray this…[Read more]

Mary-Beth you are spot on!

After I went through the five steps of denial and acceptance, I realized that there’s a lot more to the world than as we see it on a daily basis. As I said to someone one day the grass really is green, the sky has the most beautiful blue, and the flowers really are brightly colored. We don’t see it as the world whizzes…[Read more]

Probably my story is a bit more complicated than it is for other people, but that’s usually my case. Nothing is simple when it comes to me!

I was officially diagnosed in 2014 but had symptoms years before and took C/L and Amantadine for a number of years before quite successfully. The medication worked well enough for me to be able to work until…[Read more]