Meds Adjusted and actually feeling a bit better, for now

A few meds changed or added seem to be helping me. 

Never follow my medical scribblings, consult your doctor before changing or stopping any medications.

Changed first dosage of the day of carbidopa/levodopa (C/L), here's what I'm doing... instead of one and a half pills at 9am, I ramp up with 1/2 a pill at 8:45am and half at 9:15. My analogy of taking 1 1/2 pills at once is a tsunami pulls the tide out (stiffness and freezing) then the wave hits me (a brief on time) before receding back into the sea (wearing off).  Splitting the dose is more subtle of a wake up for my brain-like the tides.

Yes my meds are still wearing off and I still get dose failures but somehow they seem a little less intense.

Last night I met up with one of my friends from Miami for dinner, then to go hear music! Dose failure and I'm sure it was totally due to taking C/L during my protein filled meal (hard to time this right). So nobody got to see my signature bad dancing at the show–but my next dosage worked and after the show, besides feeling exhausted, I felt good! Keeping my fingers X'ed. 

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DBS? Courage. A second chance to live

DBS is on my mind. I am slowly inching towards the deep brain stimulation. Everyone I speak with has encouraging words.  I MAY BE SCARED. I MAY HAVE ANXIETY. It's freakin' brain surgery. Who wouldn't have anxiety or be afraid? I have anxiety getting my teeth cleaned in the dentist office.

This is MY CHANCE TO LIVE AGAIN. I want to explore places and experience things I have been thinking about since Parkinson's put my life on hold.  I know DBS is not a cure and does not slow down progression. I'm still hoping for a cure, and reversal of damage, a repair of dopamine receptors and transmitters and I don't want to sit in a pool of my own urine waiting for my demise.  This sure seems like a lifeline and I'm ready to live, again.

It's funny the things that go on in the brain, recently I met up with a red tail hawk and had a sudden boost in courage. Is the hawk my spirit animal? Maybe. Did I have the courage all along and was my brain filled with so much noise I couldn't see the path,  not to mention the goal. Maybe.

For now I'll give the hawk credit for showing me the path and giving me courage to follow the path to my chance to live again. I also want to thank those of you who i met in support groups for sharing your own experiences.

More of my thoughts and apprehension on DBS as I meet with doctors and counselors. 

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DBS? Scared out of my mind

 I'm almost 10 years since my diagnosis with Parkinson's Disease.  At first Sinemet was the magic fix. One tablet 25/100 brought me back. Then mixing, matching, optimizing meds for the next 10+ years, like playing a carnival game. Where's the neuron. Transmitter or Receptor? Guess the med, win a prize.

Failed doses and off times are my norm. My "on times" are rare and brief. Stiffness, slowness, freezing all the time. Quality of life sucks. This illness and I destroyed my spouse, which hurts me most.

DBS. Deep Brain Stimulation.   Is this the final solution? Freakin' drill holes in my skull and poke some leads into my brain. Twice. Then a third surgery for batteries. Flip switch and, who knows. Surgeries every few years for new batteries. Praying to die instead of this modern twist on a medieval technique. Sure it's been fine tuned with super high resolution cameras and imaging but it's still probing around and see how the patient responds. It's brain surgery, folks.  Does DBS even help stiffness and slowness or just the shaking?  And what about personality changes.  Before PD ravaged me, I had a pretty good personality, liked by many (I would like to think) and very quick with humor.  I'm taking a ton of pills now, will that change? Less or more?  What is long term expectations with DBS. It doesn't stop PD progression, will it slow down?  

I'm the first to admit that I live in a fantasy world. Where is the nano virus that destroys what is killing my dopamine transmitters and receptors, fix everyone affected by PD. Where are the stem cells that regrow damaged and destroyed areas of the brain, and gut. Something. We have such high tech, the Parkinson's meds all revolved around Sinemet in one form or another.  

It's almost high noon, time for a radical breakthrough solution or face the reaper. I'm just about out of time. Science I believe in you! Don't disappoint. You must think outside the box. 

So scared. Wolves are circling.  Save me. Not much time left. 

I NEED A MIRACLE! Save my loving spouse. Please.

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Robin Williams' Son Zak Says His Dad Was 'Very Uncomfortable' and 'Frustrated' Due to Misdiagnosis

Robin Williams' son Zak got candid about the effect of his father's misdiagnosis and how he dealt with the trauma after the actor's death in 2014.

Zak, a mental health advocate, spoke with host Max Lugavere on his podcast The Genius Life to discuss Williams' "frustration" and discomfort before his death. The episode was released on what would have been Robin Williams' 70th birthday.  

Zak talks of the frustrations faced by his father, Robin Williams, as he struggled to cope with the symptoms of Lewy body dementia after being misdiagnosed with Parkinson's disease—and a completely different set of expectations and treatments.

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PD Fitness Friday | Parkinson's Foundation

Fitness series presented by the Parkinson's Foundation

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Afraid to tell people I have PD

 I'm hesitant to share that I have PD with people.  Most or all of my relatives know, a few neighbors and a few friends.  

The worst reaction is when friends drop me from their lives like I'm dead or contagious.  Others range from tears, hugs, articles (so many articles), to dumb shit like, "oh okay" as if I said I just stubbed my toe.  Best response was someone I hardly know, "So sorry, if you need a hand with anything, do not hesitate to call. I mean it."

I slowed down telling friends, can't handle the dumb or disappointing responses. My advice is try not to personalize dumb reactions if you share your diagnosis. It is hard but so is this illness. I want to hang out, even if I have to sit down, don't speak much and struggle with things. 

i miss the change of venue, walks, sunshine. I miss seeing friends, feeling wanted / included, a feeling of value for my smart ideas. 

Before I told people, even before my diagnosis maybe, I thought it was just stress or something like that. I made a GoFundMe page with the fantasy a billionaire would hear my pleas and help.  I still could us a few hundred thousand, send those wealthy friends to my gofundme. 

Okay I am not waiting for a box of gold bars to show up, and while 3 or 4 hundred thousand would cut down stress, it wouldn't cure me. I need to get motivated and shake off the self pity for compassion and understanding. Start walking again, find a slow beginner yoga group, eating better, etc.

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PD Medication - Optimizing Gone Wild

 The battle of medications, dosages, frequencies versus PD is an ongoing battle.  My meds and off times went in a spiral in March 2021 right about the time I got the vaccine for COVID-19 (see PD and COVID-19 Vaccine). A coincidence? Maybe. Whatever the cause, I've been like a newborn horse trying to stand and walk, on a sheet of ice.  

My team of neurologists and their staff have been helping. Changing meds, doses and yesterday (June 30th) was the first day I didn't go to a 4 or 5, the red zone. 

I rank the PD symptoms on a scale 1=good to 5=bad,bad,bad and symptoms were not over a 3 for two days. A couple more days and I'd say we made progress! Whatever spun my meds, vaccine or random, I hope they're getting back in control now.

Anybody else have medication struggles after getting a vaccine?

UPDATE:  There were 2 good days but back to mostly off times. Meds not optimized yet. 

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Psych issues years before Movement Disorder issues?

My PD history is unlike any I've read. I started having psych issues: Anger/rage, paranoia, obsessing. My family and close friends thought I was crazy. This started about 8 years before an official diagnosis of Young Onset Parkinson's Disease (YOPD because diagnosed under 50 years old).  

The day I started Sinemet in May 2012, I felt euphoric. The Sinemet helped all non-motor issues (listed above), as well as gait, choking, arm swing, facial masking, etc.

I have one big favor to ask here, PLEASE tell me I am not the only person where weird psych behavior preceded the motor symptoms (like gait, arm swing, etc), and by so much time.   THANK YOU.

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A grant for therapeutic healing with music?

I hope this sincere idea helps the disabled get out of their confinements to enjoy some music and social time around others.

I had an idea. Instead of someone living on social security disability checks awkwardly asking venues and musicians for guest list to shows and festivals, which impacts the business income, how about a government grant (or a biz/individual philanthropic) for people with brain illness where live music has a documented huge positive impact on their brain health.  

Music is scientifically shown to stimulate neuron activity. And fund the cost of the admission for them? At least one of my friends know about grants, can you lend a hand?

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Parkinson's Disease: The Song that's Sweeping the Nation

Three intro to psychology students attempt to explain PD through song.

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Amantadine 100mg Capsules ?

 Anything good or bad to share about Amantadine? 

Besides Rytary's price and failing to last more than 2 hours in my system,  I've been having off-times and dosage failures with Rytary.  So I switched back to Sinemet and the MDS added Amantadine which seems to be creating anxiety, not sure if it's actually the new med or something else. 

UPDATE: After a week taking Amantadine anxiety settled a bit but on/off times still an issue 😿

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Living in Mexico with Parkinson's Disease? Living in MX with any Chronic Illness?

We're serious about moving to Mexico. I watch videos withpositive and negatives, read stories of others experiences but not much including moving with chronic illness.

Unfortunately, Parkinson's has gifted me with anxiety about anything new. So to help my spiraling "What If" anxiety, I'm looking for other's with PD who are living in Mexico that will share their experience. I need to get past the anxiety.

I found one blog post about a woman who moved to Mexico. She's living in the retirement community, Lake Chapala. Not exactly looking for Lake Chapala right now but I liked her story because there are many positives to focus on; from the exercise group to the neurologist in Guadalajara specializing in PD and other movement disorders. 

Yarnie Journey with Parkinson's (10/2019)

Being rational, all the movement disorder specialists I've encountered are making educated guesses about the medications.  None have a box of magic pills or secret spells that will fix the symptoms.  Maybe a specialist in another country will have better results than these highly touted New York City hospitals/universities. Something non-invasive but effective? Doesn't sound so far fetched for a plant that Mayans or Aztec used to detox kept the gunk in our heads from building up and causing many neurologic illnesses.

Initial logistics- We're thinking renting in a beach town for the winter, and if it's very hot, move up to a place in the mountains during the summer months.

I'd like to get a few names of recommended neurologists and the medication used better, worse, same as in the USA? It would be great if some ex-pats are reading this blog post and can share their support network. 

Share your experience of moving to Mexico with a chronic illness.

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PD and COVID-19 Vaccine

I have to start with, "I'm not a doctor and any mention of medical or science is my opinion"

About 4 weeks ago I received the second COVID-19 vaccination. My memory of events may be a bit hazy, but it seems like the effectiveness of my Parkinson's medications changed shortly after the vaccine.  

This is my personal opinion and others will confirm I have been complaining about off times and dose failures for a long time. Can you tell I am emphasizing this is a personal opinion of a lay person, not the results of medical science.

Pfizer 💉💉

First shot -

2:00 PM - First dose of the vaccine had.a brief warm/burning sensation.

7:00 PM - The arm which got the vaccine was very week a few hours after the vaccination. 

Day 2 - 9:00 AM - The next day I could barely lift the arm.  This only lasted about a day and a half. 

Day 2 - 2:00 PM - 24 hours after injection, I felt slightly sick, like a mild flu.

Pfizer 💉💉

2nd shot - 

4:00 PM - 2 hours after fell asleep sitting upright for a few hours.

Day 2 - 7 PM - 27 hours after had a throbbing headache followed by aching legs and arms

Day 2 - 10 PM - 30 hours in, fluish. Funny he doesn’t look fluish. 

Day 2 - 11 PM - After a brief battle headache and flu stopped. 

Day 2 - 11 PM - Arm pain. This may just be my regular day to day pain. 

Day 3 - 1 PM - approaching the 48 hour mark and eyelids feel very heavy. 

Strength in arm is okay with 2nd.  No extreme weakness like first dose.

A day after the vaccine I was definitely falling asleep during the daytime more frequently.  The off times were more pronounced, 30 to 60 minutes after taking PD med, it hit me like a boomerang. The stiffness and freezing was extreme. I tried reducing the medication and it seems to have helped the extreme off times for a while.  

Since my experience, I have read stories of others with a similar response to the vaccine. Any PD experts tracking this data to see if there are side effects from COVID-19 vaccine that changes effectiveness of levadopa/carbadopa?  It would be a nice project for a medical professional to start.

Since March, when I got the vaccine, I've also been having extreme anxiety, mostly when I wake up but also associated with the mediation off times and my vision is blurred.

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PD question: Shaking or Stiffness?

You may have heard, "everyone's Parkinson's is different" a few times by now. In my case I don't typically have shaking. When my meds wear off, I get slow and stiff--at times it is to the point that I cannot get upright if I am laying down or out of a chair.

I usually need to hook my foot under the couch or seat and pull myself up.   It can be painful and led to some awkward situations when I really need to visit the toilet and can hardly move.

 

I try to remember it will be okay once the meds kick in.  If I'm in a store, most cashiers give me time or even offer to help me manage. I bring this up because the cashier's attitude yesterday. He saw I was obviously struggling, and kept saying 'three dollar' over and over. I started to get anxious but quickly turned his obnoxious three dollar ballad into a game (while I continue struggling to get my wallet).   ?How much is it on Mars?",  "Can I pay for just a bite?", etc. 

One trick that works for me sometimes is flick my fingers or shake my wrists for a bit of relief.

Do you have tremors, rigidity or both?

Tremors (shaking)

Rigidity (stiffness)

Both tremors and rigidity

Create a survey

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Keep moving, move big!

A few years ago I went to a LSVT "Move Big" physical therapist that focuses on the movements like arm swing and gait while walking. LSVT BIG trains people with Parkinson disease (PD) to move more "normally" using big movements and steps.

People living with PD or other neurological conditions often move differently, with gestures and actions that become smaller and slower. They may have trouble with getting around, getting dressed and with other activities of daily living. LSVT BIG effectively trains improved movements for any activity, whether “small motor” tasks like buttoning a shirt or “large motor” tasks like getting up from sofa or chair or maintaining balance while walking. The treatment improves walking, self-care and other tasks by helping people “recalibrate” how they perceive their movements with what others actually see. It also teaches them how and when to apply extra effort to produce bigger motions – more like the movements of everyone around them.

The only reason I stopped going was because the place hired a new person to help with the movement exercises and he caused me to fall and bruise my hip. Otherwise it was pretty cool.

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Pandemic Social Isolation, a familiar feeling

Some of you with chronic illness will relate. When you are forced to stay home due to your illness, cannot make long range plans, often forced to cancel last minute. 

People do not want to stand too close to you just in case it is contagious.  

Assholes talk behind your back, “do you think he has it?"

Say insensitive comments, "Looks like he had a stroke" or "He’s so full of shit.” 

Your usual support network is cut off, spending days, weeks, even months at home. Anxiety. Depression. Fear. Loneliness.  

POST PANDEMIC and the world gets the green light to go.

After the pandemic your life goes back to ‘normal’ which is pretty much how it’s been during the pandemic. Only getting out to go to doctors or pharmacy. Phone calls are trying to get prescriptions covered or make doctor appointments. 

And there are those lists. "If you make a list, it might be easier to accomplish things". I'll add that to my list right now.

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5 PD Symptoms Nobody Talks About

 from parkinsonsdisease.net:

Most people think of Parkinson’s disease (PD) as a neurodegenerative motor disorder. When you picture someone with Parkinson’s you imagine someone with a tremor, slowness of movement and difficulty controlling movement. But in recent years more has been learned about the non-motor symptoms of PD. There are a broad range of symptoms that range from anxiety to weight management and beyond.

read more on parkinsonsdisease.net

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PD Awareness Month - thank the caregivers

 PD is shitty, we all know this. What's worse is the treatment of ignored caregivers.  24/7/365 thankless job dealing with the PD psych issues, non-motor issues. The motor issues suck, but doctors have a specialty in neurology for the shaking, stiffness and freezing.  What about the nasty moods, paranoia, and other psych issues specific to what is inside our Parkinson's heads?  Anybody?

here is some stuff for caregivers, on parkinsonsdisease.net/caregiving

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Preparing for a 5K race

I’m preparing for a 5K walk to raise money!  Yesterday on my walk I discovered it’s exactly 5K or 3.1 miles from the apartment to the East River and back.  Today I took a different route only walked about 2.3 miles probably because there were more food options. What takes so long to prepare pan fried dumplings anyway? 

I’m going to plan a route with faster service so I can pick up the pace a bit. The event is in a few weeks and I’m supposed to be able to complete a 5K walk in about an hour.   I know I can do it!

SUPPORT my 5K Walk, even better JOIN ME on the walk, virtually. 

Please visit my personal page https://foxtrot.michaeljfox.org/spring/yonewyork.

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