Congress Passed the National Plan to End Parkinson's Act

Big news just in from Michael J. Fox foundation

The U.S. Senate today unanimously passed the National Plan to End Parkinson’s Act, the first-ever federal legislation dedicated to ending Parkinson’s disease, sending the bill to President Biden’s desk to be signed into law. The bill passed with overwhelming bipartisan support in the U.S. House of Representatives last December. 

Senate Majority Leader Chuck Schumer (D-NY) announces the passage of the National Plan to End Parkinson's Act in the Senate.

On behalf of the 1 million people living with Parkinson’s disease in the U.S. and their families, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) applauds Congress for this historic step forward in search of improved treatments, and ultimately, a cure for every patient impacted by this disease today and in the future.  

The Parkinson’s community — including tens of thousands of Parkinson’s policy advocates, partner organizations and champions in Congress — rallied together to help policymakers understand just how critical this legislation is. From adding your names to MJFF’s petition, calling and writing representatives and senators, pitching op-eds and sharing your stories on social media — advocates in all 50 states sent more than 70,000 messages to Congress urging their support. And nearly 1,000 advocates joined MJFF to meet directly with their members of Congress.  

We’re especially grateful to the bill’s lead sponsors, Senators Shelley Moore Capito (R-WV) and Chris Murphy (D-CT) and Representatives Gus Bilirakis (R-FL) and Paul Tonko (D-NY) for their exceptional bipartisan leadership in getting this bill passed. We also extend our deepest thanks to Senate Majority Leader Chuck Schumer (D-NY), Representative Jennifer Wexton (D-VA), Senator Bernie Sanders (I-VT), Senator Bill Cassidy (R-LA), House Majority Leader Steve Scalise (R-LA), House Minority Leader Hakeem Jeffries (D-NY), Representative Cathy McMorris Rodgers (R-WA), Representative Frank Pallone (D-NJ) and the many cosponsors from around the country for helping to get this bipartisan bill passed.   

A cross-country strategy to end Parkinson’s has the potential to: 

Dramatically increase federal research funding; 

Develop more effective pathways for treatments and cures; 

Improve early diagnosis; 

Spark new and improved models for patient care; 

Create standards and measures to prevent Parkinson’s disease; 

Address health disparities in diagnosis, treatment and clinical trial participation and 

Enhance public awareness of the disease. 

As the bill heads to the president’s desk, we look forward to continuing our work with policymakers to establish the advisory council and bring the National Plan to fruition for every patient and family impacted by this disease. 

Please join us in thanking the 215 representatives and senators who supported this bill in Congress and read the Foundation's press release to find out more about this historic bill.

Read More

New C/L Delivery System Sounds Promising

My gut has issues absorbing medications. Sometimes it doesn't seem to get absorbed, other times it can take hours then suddenly the medicine works. 

My doctor has been telling me about a new deivery system for carbidopa/levadopa that works like diabetes meds, with a tiny prick into fatty tissue, not only bypassing the gut but instead of spikes of medication every time I take a pill, this should have a steady flow.

Two subcutaneous preparations, ND0612 and ABBV-951, have been shown to improve OFF time/motor activity or dyskinesis in advanced Parkinson's disease. One advantage of ABBV-951, over ND061, is that it can be used alone as l-dopa therapy, whereas ND061 must be used with oral l-dopa.

Awaiting FDA approval.

I'm not giving medical advice. Everyone's PD is different and responds differently to the medications. Work with your movement disorder specialist to figure out what's best for you.

Read More

World Parkinson's Day and Parkinson's Awareness Month

April 11 is World Parkinson's Day and April is Parkinson's Awareness Month — a time to raise awareness and advance research toward better therapies and a cure for Parkinson's disease (PD). It's also a day to signal your commitment to a future without PD.

Rally your friends and family to make a donation to support PD groups, affordable treatments and finding a cure!

About Parkinson's Disease (PD)

The symptoms of Parkinson’s are mainly from the loss of dopamine-producing nerve cells which control movement. Low levels of dopamine affect how your body moves, making day-to-day activities such as eating, getting dressed or using everyday objects like a phone or computer difficult. The symptoms typically associated with Parkinson’s are tremor, muscle stiffness and slowness of movement, but nothing about PD is typical, everyone will have varied experiences.

Parkinson’s can cause a wide range of non-movement related symptoms including chronic pain, sleep disturbance, constipation, memory concerns, anxiety and depression; all of which can significantly impact quality of life.

Each individual diagnosis is different, a combination of symptoms and side-effects; this makes treating Parkinson’s so difficult.  We need a CURE!

Read More

Parkinson's Hacks Help Man Walk

SCRIPPS News: Man with Parkinson's uses high tech devices to treat symptoms, continue liiving his life.

80% of Parkinson's patients suffer from a symptom called "freezing of gait." It’s when people suddenly lose the ability to take a step. 

SOURCE

Read More

Looking at Parkinson's differently. This guy may be onto something?

Read More

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. 

Read More

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.

Read More

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.

Read More

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?

Read More

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.

Read More

PD Treatment

Parkinson's Disease can't be cured, but medications can help with the symptoms. In some cases, Deep Brain Stimulation (DBS) surgery may be suggested. Your doctor will probably also recommend lifestyle changes, especially exercise.

---

]You may find run into some scams online that claim cures. The cure may involve going to another country for the cure. It may be about people taking a bunch of vitamins and herbs for the cure. There is no cure for Parkinson’s disease. People don't die from having PD, but you can die from PD complications such as choking, falling, infections, and skin cancer. 

The gold standard is carbidopa levodopa which takes various forms, time released pills, pumps, injections. There are also other meds that work with carbidopa levodopa. It's all a balancing act that you and your movement specialist will continue to adjust over time.  Don't let someone else's treatment affect your own decisions because everyone is different.

Read More

Getting the diagnosis

Years before the movement issues, my symptoms started before anyone would think I might have Parkinson’s Disease (PD). One non-motor symptom at a time. Never connecting the dots. Loss of smell. Constipation. Paranoia. Disproportionate Anger (rage). Choking. 

Then suddenly I went from easy going, "ready to go anywhere" to having anxiety over the weirdest things. It's when acorns started piling up on my front walk that several people told me I was nuts. I saw a few psychiatrists and therapists. These specialists have a well earned stereotype of attracting the crazy people into the field of psychiatry and psychology. My favorite treatment was from a therapist who moaned on in my sessions that she had to get over issues too, she was too short to be a super model. And her solution to my panic attacks was to snap a rubber band on my wrist. That's all. If I get a panic attack, just snap the rubber band and like shout the preacher in Alabama, "anxiety be gone!" By the way the rubber band idea didn't work. The anxiety was connected to a lack of dopamine. There really is a long list of common symptoms for PD each on their own could be many things. 

If you’re new to the PD world, here are just a few non-motor symptoms associated with PD:

• Mood disorders (depression, anxiety and irritability)
• Cognitive changes (problems with focused attention and planning, slowing of thought, language and memory difficulties, personality changes, dementia)
• Hallucinations and delusions 
• Orthostatic hypotension (a drop in blood pressure when standing, light-headedness) 
• Sleep disorders (insomnia, excessive daytime sleepiness, vivid dreams, talking and moving during sleep, restless legs syndrome) 
• Constipation 
• Pain 
• Fatigue 
• Vision problems 
• Excessive sweating 
• Dandruff (seborrhea dermatitis) or oily skin 
• Urinary urgency (frequency and incontinence) 
• Loss of sense of smell 
• Sexual problems 
• Weight (loss or gain) 
• Impulsive control disorders (binge eating, excessive shopping or gambling) 
• Soft voice 
• Masking (no facial expression) 
• Drooling or excessive saliva 
• Speech 
• Small handwriting
• Choking 
• Swallowing problems

The non-motor symptoms have a long lead in time, at least a decade before classic motor related symptoms appear.

In 2012 things got really bad. The motor symptoms began. I was shuffling my feet. I had extreme stiffness in my neck and shoulders. I couldn't walk two blocks without stopping to rest my back.

My wonderful wife and my primary care doctor did the detective work.  They put everything together, all the symptoms and insist I see a neurologist.  By the way, my wife also found the primary care doc! I am lucky, she not so lucky. A PD caregiver's life is no picnic.

The neurologist ran some motor tests but the real test was when the doctor prescribed a trial of Sinemet (Carbidopa-Levodopa), my symptoms were better right after taking this med, the neurologist diagnosed it as Parkinson’s.

PD or Young Onset Parkinson’s Disease (YOPD) which is the label I was given because the diagnosis was before 50 years old, affects everyone differently. You may or may not get tremors. You may or may not have a slow gait. Etc. It’s all so variable. 

Find a movement disorder specialist (a neurologist who has a specialty in treating PD) that you like, don’t worry about switching doctors. My first movement specialist wasn't the greatest match, the second guy was great and stuck with him for a few years. At a seminar on PD treatment options I met a cool young doctor and made an appointment to see him. I am glad I checked out my options because he's great and I feel very comfortable with him. 

Note that it’s not uncommon to change your PD doctor a few times.

Read More