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...

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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...

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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...

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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...

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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...

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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...

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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...

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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,...

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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...

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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"...

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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...

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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...

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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...

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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...

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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...

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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. ...

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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...

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