VA plans expansion of benefits for disability claims for conditions related to certain toxic exposures

| By Sabrina Da Rocha
Categories: News, Support News
  New evaluation process to be applied in identifying future presumptive condition VA announced today two major decisions related to presumptive conditions associated with Agent Orange and particulate matter exposures during military service in Southwest Asia. Agent Orange VA will begin implementing provisions of the William M. Thornberry National Defense Authorization Act for Fiscal Year …

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CurePSP Cancels In-Person Events

| By Sabrina Da Rocha
Categories: News, Support News, Volunteer
From Bill McFarland, Chair, Board of Directors On behalf of the CurePSP, Inc., Board of Directors, I’m writing to let you know that given the continued uncertainties created by the COVID-19 pandemic, and without a predictable avenue to safely bring together our caregivers, healthcare partners, and volunteers, we have been forced to cancel our in-person conferences, events, …

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The Mystery of My Brother’s Brain – a personal story

| By Denise Forero
Categories: News, Support News
This story comes to us from Solna Braude, who shares her brother’s journey in finding a definitive diagnosis for his neurological disease. Solna hopes to motivate patients and their families to donate their brains. Brain donations are an extremely valuable resource for science and for developing future therapeutic interventions for all neurodegenerative disorders. The Mystery …

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Mama’s Legacy

| By Sabrina Da Rocha
Categories: News, Support News
This story comes to us from Noha Al-Awadi about her mother and her battle with progressive supranuclear palsy. Tuesday, October 9th, 2018 marked a year of her passing. Mama’s Legacy By Noha Abdulrahim Al-Awadi “What do you mean, ‘progressive’”? That was the only question my mother asked her neurologist at Johns Hopkins Hospital in the summer of …

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FREE Webinar, October 18

| By Lucas Metherall
Categories: Support News
Caregivers’ Search for Meaning For family and professional caregivers by Janet Edmunson, M.Ed. WHEN: Thursday, October 18, 2018 (The webinar also will be recorded for viewing later) – 7:00 p.m. (Eastern) – 6:00 p.m. (Central) – 5:00 p.m. (Mountain) – 4:00 p.m. (Pacific) HOW LONG: Webinar will be approximately 30-40 minutes in length. REGISTER: by …

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Global Citizen Festival, Ultimate VIP Tickets!

| By Lucas Metherall
Categories: Support News
Once again, CurePSP has secured four (4) Ultimate VIP tickets to the Global Citizen Festival, in Central Park, New York, September 29. At a retail value of $2,500, these tickets are now up for auction in support of CurePSP’s programs and services. Make a bid – who knows – you could win the best seats …

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Complexities With PSP

| By Lucas Metherall
Categories: Support News
This article by Niti Vaidya, our newest Peer Supporter in Mumbai, India, covers the small changes that occur with PSP that are often overlooked. Major complications that come with PSP, such as aspiration, UTIs, and the swallowing troubles that lead to aspiration, are always discussed with our doctors. However, because we, along with our doctors, …

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Types of Care and Care Facilities

| By Lucas Metherall
Categories: Support News
This article was written by CurePSP contributor and volunteer, Diane B. Breslow, MSW, LCSW. What follows is an overview of the spectrum of care and care facilities for adults with physical impairments or chronic disease. All of the levels discussed are potentially appropriate for people with PSP and related diseases. That said, it is extremely …

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Matching Grant Challenge!

| By Lucas Metherall
Categories: Support News
Dear Community, The Light of Day Foundation is teaming up with you once again, through the Hope Tour, to fight progressive supranuclear palsy (PSP) and related prime of life brain diseases by matching your gifts! Every dollar you give today up to $50,000 will be generously matched, so that your donation is doubled! $50 becomes …

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CurePSP Receives Two-Year Grant from the Stavros Niarchos Foundation to Support Families with Caregiving Burdens

| By Lucas Metherall
Categories: Support News
Grants are administered by CurePSP through its Cherie Levien Quality of Life Fund, supported by the Levien family, the Stavros Niarchos Foundation, and other donors. CurePSP has received a two-year grant from the Stavros Niarchos Foundation (SNF) to support the Cherie Levien Quality of Life Fund, established in 2017 in memory of Mrs. Levien by …

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Question and Answer with Ileen McFarland

| By Lucas Metherall
Categories: Advocacy, Support News, Volunteer
Ileen McFarland, CurePSP Board Member and Dallas support group facilitator, talks to us about her upcoming event, Hope Squared, and about the motivation behind being one of CurePSP’s most active advocates. What is your history with PSP and caregiving? My late husband was diagnosed with Parkinson’s in September of 2006, and PSP in 2007.  After …

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Time To Go

| By Lucas Metherall
Categories: Advocacy, Support News
This story comes to us from Rio Contrada, a young filmmaker and producer whose father, Fred Contrada, has progressive supranuclear palsy (PSP). Rio is making a short film based on his father; the crowdfunding link to support his project is below.   I was 25 years old when the accident happened. My girlfriend and I …

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Words From a Caregiver in India

| By Lucas Metherall
Categories: Support News
In this beautifully written article on caregiver care, Niti Vaidya from India shows us that caregiving for a PSP sufferer is the same the world over. it takes forgiveness, humility, patience, and kindness, and it’s OK if you run out of these things from time to time. Caregiver Breathers, by Niti Vaidya Being a caregiver …

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Navigating Veterans’ Affairs for PSP Sufferers

| By Lucas Metherall
Categories: Advocacy, Support News
One Family’s Struggle Inspires Them to Help Others This article appears in our Spring 2018 Newsletter. From 1967 to 1971, Thyra Burakowski’s husband, Anthony (Tony), worked for the United States Navy, and was in Vietnam from 1968 to 1969. “I cannot tell you much about Vietnam because Tony did not speak about it at all,” …

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10 Documents Every Caregiver Needs

| By Lucas Metherall
Categories: Support News
Article by Lori Thomas, February 27, 2018, SeniorAdvice.com Being a caregiver can sometimes be an overwhelming responsibility. Whether you are caring for a parent, a loved one, a friend or even an acquaintance—this role requires a great deal of time and commitment. Caregivers not only need to provide daily support for those they look after, …

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NORD Statement Regarding State Proposals to Alter Their Medicaid Program

| By Lucas Metherall
Categories: Advocacy, Support News
Posted by Laura Mullen Washington, D.C., February 8, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding recent state proposals to alter their Medicaid program by utilizing the federal 1115 Waiver process: “In an attempt to control health care …

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Caregiver Stress and Burnout 

| By Lucas Metherall
Categories: Support News
Tips for Regaining Your Energy, Optimism, and Hope  an excerpt from the 2018 CurePSP Guidebook The demands of caregiving can be overwhelming, especially if you feel you have little control over the situation or you’re in over your head. If the stress of caregiving is left unchecked, it can take a toll on your health, relationships, …

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A Free Webinar, by Janet Edmunson

| By Lucas Metherall
Categories: Support News
Minimizing Caregiver Fatigue by Janet Edmunson, M.Ed. For family and professional caregivers Tuesday, March 6, 2018 (The webinar also will be recorded for viewing later) 7:00 p.m. (Eastern) 6:00 p.m. (Central) 5:00 p.m. (Mountain) 4:00 p.m. (Pacific) Webinar will be approximately 30-40 minutes in length. Register online today by clicking the link below. Or paste …

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CurePSP Forum To Be Replaced

| By Lucas Metherall
Categories: Support News
Brain circuitry
For years the current CurePSP forum has been an amazing resource for people to connect on matters most relevant to them, with people dealing with the exact same issues. The forum is currently moderated by a superstar volunteer, a Mr. Ed. Plowman, who has worked tirelessly to read absolutely every single post and manage new …

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Holiday Hints For Caregivers

| By Lucas Metherall
Categories: Support News
This article, courtesy of the National Institute of Aging, goes through some ways for carepartners to survive the madness that is the holiday season.   Tips include:   Celebrate holidays that are important to you. Include the person with PSP, CBD, MSA, or related diseases as much as possible. Set your own limits, and be …

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The Monster Corralled

| By Lucas Metherall
Categories: Support News
This article by John Royer, our dear PSP correspondent who sadly passed away in September, is the last PSP article he wrote. John’s insight and ability to voice the experience of having PSP has brought comfort and solace to many facing the same journey, and he is dearly missed.   August 28, 2017 I started …

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Make Meaning to Stay Positive

| By Lucas Metherall
Categories: Support News
November is carepartner month, so we will run a series of articles taken from our new Guidebook on caregiving. For all of you heroes out there, we are thinking of you. By Janet M. Edmunson, MEd Taken from her book, Finding Meaning with Charles, and used with permission.   It wasn’t until about the third …

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A Mother’s Hands

| By Lucas Metherall
Categories: Support News
I wrote this before my New York Times story posted about a year ago and submitted it as an alternative essay on my mother. I am posting this here because I learned that many, many people read my NYT story online and realized their parent had this very condition based on my mother’s symptoms and …

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The Crippled Trio

| By Lucas Metherall
Categories: Support News
The 22nd article by John Royer, our PSP correspondent who tragically passed this past September, is full of his usual humor as he faces the Monster, PSP.   The Crippled Trio by John Royer   I have been talking to my nephew for the last few days over the Internet. He is 58 years of …

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My Thoughts on Anomalies

| By Lucas Metherall
Categories: Support News
This article by John Royer, who sadly passed away from PSP in September, imagines a world where someone has recovered naturally from PSP. If only that were possible.   August 12, 2017 It’s time to go back to doing what I used to do. I’ve experimented with letting you know what it’s like to try …

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My Life in a Nutshell

| By Lucas Metherall
Categories: Support News
This article, the 20th by John Royer, our friend who has sadly passed form PSP in September, 2017, is a brief recounting of his life. John wanted us to know what it’s like trying to communicate while being affected by strokes and PSP, so this article is unedited. This is how John spoke.    August …

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False alarm and PSP awareness, by John Royer

| By Lucas Metherall
Categories: Support News
This article, was written in August by John Royer, our beloved and cherished PSP correspondent who sadly passed away on Sept. 10, tells us about the progression of PSP, but still contains that indelible spirit we have come to love. False alarm and PSP awareness   It is Tuesday, August 1, 2017 and I have …

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My Feelings on Death, by John Royer

| By Lucas Metherall
Categories: Support News
As you may know, John Royer is sadly no longer with us. His spirit, humor, and strength went to another dimension (to paraphrase John), on September 10 of this year.  This article was written late July, and is as heartfelt and brave as any he has written, and features his thoughts on mortality and the …

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RIP John T. Royer

| By Lucas Metherall
Categories: Support News
Funny is Good   In the midst of winter, I finally learned there was in me an invincible summer. Albert Camus   We were saddened to learn of the untimely death on September 10 of John T. Royer at the age of 71. John became the voice of the PSP patient with his honest, perceptive, …

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Speech Therapy after 2nd Stroke

| By Lucas Metherall
Categories: Support News
This article, by our man on the inside, our PSP correspondent, John Royer, gives us an insight into the effects of PSP, and strokes, on his language ability.   Speech Therapy after 2nd Stroke by John Royer   I had a stroke and it adversely affected my brain. It has had a number of negative …

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My Thoughts About Life And A Friend

| By Lucas Metherall
Categories: Support News
John Royer’s latest article takes us through his conversations with a friend and fellow PSP sufferer. By John Royer It is July 13, 2017 and a very hot day. Rain is on the way.   This morning I had a phone call from my friend Ron. He has PSP as well. Our symptoms are similar …

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PSP and a Stroke Make Things Interesting

| By Lucas Metherall
Categories: Support News
The latest article from John Royer, as he thinks about the effects of PSP on his body and mind. It is July 8, 2017 and I have absolutely no idea of what to talk about. The only thing that can rectify that problem is to let my mind wander and see what it will come …

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Was it the Anesthesia?

| By Lucas Metherall
Categories: Support News
A new article from John Royer, our PSP correspondent, our man on the inside, questioning the causes of PSP.    It is June 16, 2017. I start today with the same Frankenstein movement and dizziness as on every other day. In other words, I am a mess. As the day progresses my dizziness diminishes and …

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About my Lola, by Bronte Ficek

| By Lucas Metherall
Categories: Support News
In Tagalog, the native language of the Philippines, Lola means grandmother. My Lola, Mercy Lotilla Asencio (pictured), lived in General Santos City, at the southern tip of the Philippines. She was the mother of seven children; my mom is the oldest of those seven, and I am the third oldest grandchild of 15. As a …

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Other-World Imaginings, by John Royer

| By Lucas Metherall
Categories: News, Support News
  From our man on the inside, our PSP correspondent, John Royer. The following is a fictional story John wrote when in a depressed state in 2016, in order to relieve stress   I had been sick, sick with a neurological disorder that was slowly killing me. I remember the end stage. I had choked on …

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A Good Mind In A Useless Body.

| By Lucas Metherall
Categories: Support News, Volunteer
This very insightful article, by John Royer, our PSP correspondent, argues that PSP can’t take your loved one away if you don’t let it.    I’ve been noticing that a lot of people say that their spouse or parent is gone because they cannot speak, they cannot communicate. I think it is a mistake to …

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Open Heart Surgery, by John Royer

| By Lucas Metherall
Categories: News, Support News
Today I am going to write about something different. Earlier in one of my articles I said that I would not talk about the open-heart surgery but I’ve changed my mind. It is worth going over because I can find something humorous about something as serious as that as well as anything. It was August …

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A Hospital Stay, by John Royer

| By Lucas Metherall
Categories: Support News
In his 9th article, John Royer remembers a hospital visit where he discovered he had unknowingly suffered a stroke months prior.    There is a hospital stay that I forgot to mention that occurred at the end of 2015 and extended slightly into 2016. I blame the oversight on PSP. Of course, I blame all …

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Square patches of light remember you

| By Lucas Metherall
Categories: Support News
This beautiful poem, by Bronte Nicole Ficek, originally published in Neurology, June 2017, is a tribute to her grandmother, Mercy Lotilla Asencio. Read her personal story here.   Square patches of light remember you   Square patches of sunlight blanketing my piano Remember you today, Lola. They speak of a baby-pink end of life, somehow beautiful in your …

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Update from John Royer, PSP Correspondent

| By Lucas Metherall
Categories: Support News, Volunteer
This is article six from John Royer, a man living as humorously as possible with PSP. It’s the middle of May and I feel better and I haven’t fallen once. My early-morning dizziness is still with me but it is not as bad as it used to be. My walking varies from hour to hour. …

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Update from John Royer, PSP Correspondent

| By Lucas Metherall
Categories: Help News, Support News
This is article five from John Royer, a man living as humorously as possible with PSP.   It is a day that is not so good for me. My mood is glum. I get dressed with great difficulty, and Mary puts my socks on for me, a feat that I cannot do anymore. And then …

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Update from John Royer, PSP Correspondent

| By Lucas Metherall
Categories: Support News
This is article four from John Royer, a man living as humorously as possible with PSP.   I thank the physical therapist that I have, namely Ryan Macalintal of the GOOD SHEPHARD REHABILITATION HOSPITAL in Allentown, Pennsylvania. Without Ryan and his organization, I would not be able to do the things that I am going …

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John Royer, thoughts of a PSP patient

| By Lucas Metherall
Categories: Support News
This is the third installment from John Royer, our correspondent with PSP.  See his first article here. See his second article here.    You can find out all you want about PSP by searching the Internet. You will find that there are PSP sites in all the countries that speak English. I can’t speak for …

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An Update From John, a PSP patient.

| By Lucas Metherall
Categories: Support News
  A short while ago we received a letter from John Royer, a man living with PSP, and we placed it on our blog.  We suggested we could post more of his thoughts, and he sent us this: Dizziness upon sitting up in the morning. When I sit up in the morning the view opposite …

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A message from John, who has PSP.

| By Lucas Metherall
Categories: Support News
  This beautiful article was sent to us by one of our community, John Royer, who has PSP. Thank you John, for sharing these words.      PSP is a shortened version, an acronym for Progressive Supranuclear Palsy. It’s a tough name to say. PSP is easier. It describes what I have. The life span …

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Why Advocacy is Vital

| By Lucas Metherall
Categories: Support News, Uncategorized, Volunteer
Trish Caruana, Vice President - Patient and Carepartner Advocacy
In this article, Trish Caruana, Vice President – Patient and Carepartner Advocacy explains what advocacy is, and the common hurdles people face when considering advocacy. Care, consciousness and cure are central to the mission of CurePSP, but how we advocate for people with PSP and other prime of life diseases is also important. The lack of …

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A children’s book, explaining PSP and other disorders.

| By Lucas Metherall
Categories: Support News
  One of our community, Richie Morris, whose mother has PSP, is writing and publishing a book for children, to help explain the changes they observe taking place in their beloved family member. In Richie’s words;  “Every summer for a couple of weeks my mother, father, brother and I (including our closest friends), vacationed at …

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An article by one of our community

| By Lucas Metherall
Categories: Support News
One of the CurePSP community has written this beautiful article on the intricacies of finding love again.  Article by Joanna McFarland Owusu. Posted on Bluntmoms.com, Dec. 2016 With Christmas almost upon us, I find myself ruminating on a moment last October at the State Fair of Texas, of all places. Every year we make an …

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New York Opens First Support Group!

| By Lucas Metherall
Categories: Support News, Volunteer
We are very happy to announce our first support group in New York!   Our New York Support Group Leader Training sessions in August were a great success, and we can happily announce the following support group for PSP patients and carepartners, in Manhattan, NY. The support group meeting will be held; October 11th, at …

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The role of caregiver; Kathryn Leigh Scott

| By Lucas Metherall
Categories: Support News
| Tags: , , ,
Originally printed in The Timberjay. By Jodi Summit. Growing up on a small family farm outside of Minneapolis, Kathryn Leigh Scott loved to write and put on plays, often casting her little brother, Orlyn Kringstad of Tower, in roles that required him to don wedding dresses. The children, Orlyn explained while introducing his sister to …

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