Everyone who follows me knows I am a bright light for upbeat and positive living to deal with my Parkinson's Disease. This morning brought about a REALITY CHECK in this letter to my family (please excuse the expletives for which I have earned and am unapologetic after 8 1/2 years on my PD journey.) I write :
To My Family,
I've just made it through another sleepless night after not being able to stay asleep. Thank you Parkinsons-induced insomnia. I officially hate you.
My problem? A skyrocketing level of stress I cannot shake after the experience of going off my meds TWICE and witnessing my underlying condition. My body hidden by bottles of expensive medication is unable to breath comfortably at my diaphragm, my neck contorts my head to the right and upward pulling my chin diagonally away from my body painfully out of control, all while my muscle twist and turn in agony as I cry out loud then sob with each misfiring nerve in all my limbs; all four stuck straight out from my body like a corpse. I cannot sleep. I cannot walk. I have no reflexes in my legs. Everything hurts. I have Stage 4 Parkinsons under this expensive medication. I am scared shitless and I cannot handle this by myself.
My fears are exacerbated by living alone, which I've never done before. I've officially failed at my attempt. My fears foster a depression that disappears as soon as I am with you. I want to live a happy, full, healthy, active life. I want to jump out of bed in the morning and enjoy a productive day. Those days are gone. Replaced with no motivation to get out of bed or leave my apartment under the weight of constant panic. I feel like the earth is rumbling beneath me. I'm on very shaky ground and trying desperately to hide. Another person's energy is all it takes to light mine up and motivates me to make shit happen. I take my meds on time and completely forget I even have it. It is clearly night and day and there is no doubt about it. Living alone has taken its toll since dad died and I am struggling. I woke up yesterday morning with the highest stress levels I've had since coming back to Florida in 2013. Frankly, I scared the crap out of myself and was sure I was going to be making a trip to the ER for the sheer inability to get my out of control rapid heart beat pounding in my chest under control. I swore it was going to end in a heart attack That's it. I've had it. Now I'm pissed off and I need to take action now. I refuse to live this way.
Asking for help does not come easy or naturally for me. I'm usually the one that gives it. I refuse to continue to pretend I can handle this. I can't. I need to recover from the last 12 months of constant change. I went from Stage 2 to Stage 4 PD in only a handful of months. I need to reverse this and quickly. I refuse to let it get any worse and the first step on my road back is to get out of here.
I waiting for the landlord's answer to vacating my lease early. Mom has offered to take me in to care for me. I gratefully accept her offer.
I am not waiting for PD's answer. Only I can reverse this mental ping pong. I need to get on with living, not dying, and the first step is to rejoin the world by stop feeling sorry for myself. The last 12 months have been challenging to say the least. I promise to admit what I can and cannot do. Do what I can to the best of my ability and quit trying to make everything perfect. That was my old life. I am not okay on my own. I need to eat, sleep, exercise, meditate, take my meds on time, dream, create, laugh, run, ride my bike 10 miles a day, and fucking enjoy life while my meds still work. Like Cinderella I can magically walk and run but don't know how or why. I need to stop thinking and start living before I turn into a giant pumpkin. RECOVERY WILL NEVER HAPPEN LIVING ON MY OWN. I am not wasting another day. This is a 10 round match. PD may have won round 4. Round 5 ends in a knock out. I've had enough of this shit. I need to get over myself. Whatever you do, do not allow me to live on my own. I suck at it. Royally. Come see me and bring a ladder so I can climb out of this mother fucking hole I have made. I've got important shit to do. Losing to Parkinsons is NOT one of them. Not today.
MORAL OF THE STORY: Be careful NOT to tick off a warrior. We fight back dirty!!!
In my lifetime! Told you!!!
CLICK HERE: https://parkinsonsnewstoday.com/2017/06/15/affitope-pdo3a-vaccine-triggers-immune-response-against-protein-linked-to-parkinsons/
AFFiRiS’s new Parkinson’s vaccine, AFFITOPE PD03A, triggered a solid immune response against the alpha-Synuclein (aSyn) protein associated with the disease, according to a Phase 1 clinical trial.1
Patients also tolerated the therapy well, researchers said.
Werner Poewe, a professor at Austria’s Medical University Insbruck, presented the results at the 21stInternational Congress of Parkinson’s Disease and Movement Disorders in Vancouver, Canada, June 4-8.
He is part of a European collaboration known as SYMPATH whose aim is to develop vaccines targeting the aSyn protein. The collaboration involves AFFiRiS and seven academic and industry partners in Germany, France and Austria. The European Union is financing SYMPATH.
The 52-week Phase 1 trial (NCT02267434) evaluated the immune response, safety and tolerability of AFFITOPE PD03A in patients with early Parkinson’s disease.
Researchers randomized 36 patients to receive one of two doses of the vaccine or a placebo. One dose was five times larger than the other. The basic immunization was an injection a month for four months. At 36 weeks, patients received a booster immunization.
The vaccine triggered immune responses against the aSyn protein over time. The reactions were dose-dependent, meaning that the higher dose triggered a stronger response than the lower one. The booster immunization reactivated the vaccine’s antibody production, researchers said.
Both doses of the vaccine were well tolerated, with patients reporting no serious adverse events.
AFFITOPE PD03A is a synthetically produced aSyn-mimicking peptide — or protein component — that targets the aSyn protein.
ASyn plays a key role in the onset and progression of Parkinson’s. Current treatments can only alleviate the disease’s symptoms. Scientists say aSyn has the potential to actually slow the disease’s progression.
SYMPATH researchers hope to develop an aSyn-targeting vaccine for multiple system atrophy as well as Parkinson’s. The consortium has already created a vaccine besides AFFITOPE PD03A, known as AFFITOPE PD01A. A key reason the EU became involved in the project is that current therapies for many neurodegenerative conditions are unable to alter the diseases’ course.
“The immunogenicity profile [of AFFITOPE PD03A] looks encouraging and supports the hypothesis that patients elicit an antibody response specific to alpha synuclein, a protein that is believed to be contributing to the pathogenesis of Parkinson’s,” Poewe, the principal investigator of the study, said in a press release.
For those following my Parkinsons, I am getting my wish and being re-evaluated for the DBS surgery. Hope its my day next Friday, June 23rd. I hope to finally get past these tremors. At 8.5 years the velocity and frequency is disruptive at best. A giant pain in my a** is more like it as it reappears 6 times every day. Can't wait for the day they turn the gadget it on and I am finally able to sit still once again. That moment lives in my dreams. Praying for reality.
Videos: Before and after meds Saturday morning.
Wish me luck.
SAN FRANCISCO — Tech company developer conferences always feature a wacky demo or three.
But at Build 2017 in Seattle Wednesday, Microsoft went for the waterworks at the conclusion of CEO Satya Nadella's keynote address: it showcased a prototype watch that temporarily eliminated the arm shaking that often plagues those suffering from the neurological disease Parkinson's.
After a speech that both heralded and warned about coming leaps in technological power, Nadella screened a video that told the story of two British Microsoft Research employees, Haiyan Zhang and Nicolas Villa, who developed the tremor-interrupting device for a BBC documentary, The Big Life Fix
The Emma Watch, a prototype that was shown at Microsoft Build 2017, can still the trembling arms of those suffering from Parkinson's. (Photo: Microsoft)
Working with graphic designer and Parkinson's sufferer Emma Lawton, 32, the researchers developed a watch — which they named Emma — that, according to Microsoft, "vibrates in a distinctive pattern to disrupt the feedback loop between brain and hand."
When the lights went up, Nadella welcomed both Lawton and engineer Zhang on stage, thanking them for showing that thanks "developers can have impact."
Emma Watch remains a prototype, Microsoft says, but the developers are working with a neuroscience research team to undertake trials with a small group of Parkinson's sufferers.
The watch works through a combination of sensors and AI (artificial intelligence) techniques to potentially detect and monitor symptoms like tremors, stiffness and instability, among others, according to Microsoft. "Once these symptoms can be identified and measured, it’s possible to develop technology and devices that help humans manage their symptoms. AI is used to classify the sensor information and elicit real-time responses on small devices like wearables."
ing to draw a square with her shaky right hand, and then again, wearing Emma. Watson erupts in tears as she calls her mother to say this is the first time she's been able to write her name in ages.
Microsoft stresses that Emma Watch is not a cure for the disease, which afflicts 10 million people. "Rather, its technology has the potential to help Parkinson’s patients manage symptoms that impede regular functions. The goal of further research is to determine whether Emma Watch could help other people with similar Parkinson’s symptoms."
Follow USA TODAY tech reporter Marco della Cava on Twitter.
I have been struggling with my balance lately. If you are experiencing the same, grab a bike and go for a ride. It stops tremor (temporarily), improves your balances and raises your endorphins. Plus you're not cooped up inside feeling sorry for yourself. Get out and enjoy the fresh air!
Do you have an Application pending with Social Security for Disability (like me) and you are waiting for a determination? Read this posting for a hidden secret to expediting it.
I BELIEVE I HAVE STUMBLED ACROSS ONE OF THE FEDERAL GOVERNMENT'S BEST HIDDEN SECRETS.......
Do you have an application in to Social Security for Disability (like me) and you are waiting 6-9 months for your "determination"? Did you know that each US Senator's office is staffed with caseworkers waiting to assist you with expediting requests to any of the federal agencies below should you have a valid need for help? This is one of the services provided to us that no one knows about. What a find!!!
Need help getting your application expedited? Go to your Senator's website. Look for the "PRIVACY ACT CONSENT FORM". download it and complete it with a short description of what I you need their help with. In my case, within 7 days I will be assigned a caseworker to discuss my application in depth. I will then work one-on-one with this person to come up with a presentation my Senator, Marco Rubio will make on the Senate floor for approval to ask the SS Admin to expedite the determination of my case. If SS approves my app, Rubio just cut through the red tape for me and saved 3-5 of more of my life waiting!!!!!!
Here is Rubio's website link: http://www.rubio.senate.gov/public/index.cfm/casework#ED306E3C-77F6-47F3-8F9F-665024733180
Here's the list of departments your Senator can assist you with:
Labor (for immigrant Foreign Labor Certifications)
Immigrant and Non-Immigrant Visas
So if you or anyone your know has submitted a claim for disability to Social Security, don't wait. Get your signed form in today!!!! Please be sure to share this post if relevant to anyone you know.
NOTE: The Senator can only assist with the request to expedite. This will not help or hurt the determination for your case; only expedite it. Your Senator cannot fight for you or answer any legal questions. They also cannot assist with appeals. Read the area on your Senator's website carefully for the limitations and how to apply.
I hope I helped at least one person with this "secret" information. Please feel free to share this to your social media to help spread the word.
Have Parkinsons or Are You a Caregiver? Looking for an Online Support Group that Really Works? Check Out MyParkinsonsTeam.com
As you know I've had Parkinson's Disease for 8 years and counting. I have subscribed to and browsed nearly 100 Parkinson's related websites, support groups, and blogs to read up on the latest treatments, funding, research and to listen carefully to how other people, just like me, cope with Parkinson's every day.
Boy, did I find a treasure. You must check it out. I'm not sure how I came across MyParkinsonsTeam.com, but I am so pleased I did. This is not your ordinary Support Group. Its the design that really makes this one work.
Typically a Support Site / Group will allow one member to post a question or comment and everyone responds. Its a bit interactive, but you don't know other member's STORY. When you sign up with MyParkinsonsTeam.com, you start your own profile page that is the most individually comprehensive profile I have reviewed. In your profile page you get to tell everyone your "story" in your own words. You share with others your medications and treatments (what works and what doesn't). You list YOUR personal PD medical team; you can also recommend them or comment on their services. Your profile also includes relationship status and you can participate in a Q&A section with guided questions to answer. I felt right at home immediately.
MyParkinsonsTeam.com was designed for individuals to meet other individuals that are either in their local area (perfect for meeting other PD journey men and woman you didn't know lived close by for support) or have your similar symptom pattern or treatment regimen. Once you find someone who fits the profile of someone you would like to have on your personal "Support Team", you simply add them at the touch of a button and write them an introductory note.
I've only been a member for about a week and I already have a "team" built of 13 like-minded PDers. Although I love my PD circle to be eclectic, I do lean towards the more active, well rounded, fiercely independent survivor who is doing everything they need to do to live with PD successfully and encourage others to do the same. I can hardly believe the wonderful people living with PD I've met so far from around the US. We chat one-on-one, we can meet locally for a cup of coffee, you can write out questions for your "team" to answer, we swap information on what works best, and I have come to look forward to connecting with members of my team on a daily basis. It is not a chore; it is similar to your own PD family you build yourself.
I very highly recommend this PD Support Site. I can easily say its in my Top 3 of all time. Check it out and sign yourself up at www.MyParkinsonsTeam.com. You will thank me later.
Here is my Personal Profile I set up on MyParkinsonsTeam.com. Feel free to add me to your team and let me know what you think of this site.
Good morning, friends! I woke up to the most amazing surprise in my email; it shocked me straight awake. It was from the founder of Feedspot.com, the RSS Feed for bloggers. informing me that my blog has been named one of the TOP 50 PARKINSONS BLOGS on the web today. Click here to see their full story: http://blog.feedspot.com/parkinson_blogs/
The founder, Anuj Agarwal wrote: "I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 50 Parkinson Blogs on the internet and I’m honored to have you as part of this!" To say this is a shock is way understating how I feel at the moment.
Their RSS Feed is subscribed by all of the major news organizations (TV, radio, print). If you don't know what an RSS Feed is - you can subscribe to many different publications and Feedpost will send you an email each morning with headlines so you can read what you are interested in vs. having to read every single website individually. Feedsport.com is offering my blog as one of the 50 choices for Parkinson's information available. Please check it out. Go to FEEDSPOT.COM, open an account for yourself and subscribe to my blog along with other amazing outlets, including the Michael J. Fox Foundation, the National Parkinsons Foundation, Parkinsons News Today and the Brian Grant Foundation! I am in their amazing company.
I know I need to breathe, but am having a bit of a hard time doing that. Isn't it funny and incredibly humbling when your life changes in a nanosecond? Synchronicity still thinks I have a way to go before I am perfectly in balance so I give up my control and let the Universe keep re-arranging. Friends, we are on the ride of our lives.
Thank you to Anuj and his crew for this honor. Thank you God for my life every single day. I have a beautiful life I would not trade for anything with beautiful loves and angels surrounding me at all times. Amen.
Do you need support?
Find us on Facebook at:
"Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team)
Connect with me online:
"Lisa Vullo is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."