by MSA Coalition | Apr 2, 2020 | MSA-Blog
Written by Larry Kellerman (MSA Coalition Board of Directors and Support Line volunteer)
I remember the day as if it was yesterday. My wife’s physical condition due to the neurodegenerative disease multiple system atrophy (MSA) was such she could no longer make it to the doctor’s office for a checkup and her doctor had said, “I’ll do a house call.” As several of my wife’s friends stood by the bed and visited, the wonderful doctor who had cared for her for over three years pulled up in front of the house and walked up the driveway.
At the end of her hour-long examination and the ensuing discussion, Dr. P stood up and said “I think it’s time to get hospice here to help both of you.” She left that August 4th with assuring words that we both would have much needed support soon. Three days later we had our first visit by the hospice nurse and by the end of the visit had been given a glimpse of the challenges and benefits of hospice care.
When it’s time to consider hospice care in multiple system atrophy
Hospice care comes at a time in a patient’s life when he/she is not expected to live beyond six months, either because of disease prognosis or the patient choosing to reject a lifesaving treatment. Hospice care is provided by a team and part of that team’s mission is to support the goal of the highest quality of life possible for the patient. In the end hospice care is vital when caring for a loved one who has chosen to stay at home during those last months.
Once hospice has been certified, identifying a good hospice provider is important. In our case the doctor recommended a provider and we stayed with them until the end. There have been individuals who have called the Multiple System Atrophy Coalition call line to discuss their hospice experience and told me they decided to change providers. The goal should remain the same no matter the hospice provider: the best quality of life (QoL) possible for the patient.
Hospice is a team effort
They bring to the team the nurse, support staff, a doctor, a social worker and specialists if necessary; you bring your own skill set and all the friends and family members who support the patient. What I found in the six months we had hospice staff at our house was a good integration between their team and my wife’s friends. In part it was because all of those involved saw what caregiving for an MSA patient did to the health of the caregiver; in part it was because everyone made a real attempt at being supportive of each other.
Hospice staff members are not perfect. You do want to be very aware of what is going on when they are at the house. There are many examples that can be provided by other caregivers, but I can share one example that illustrates potential issues surrounding hospice care.
There came a day when my wife needed to have a catheter inserted and two hospice nurses arrived to do so. As one nurse bent over to insert the catheter her long hair fell over the pubic area and needed to be brushed out of the way. It was the first catheter for my wife and within a few days she had a full blown urinary tract infection (UTI). I called the hospice doctor and told him what happened. He said that is not acceptable and the next time make sure the nurse understands that. So, guess what? A couple of weeks later the catheter needed to be changed and the same nurse arrived, again with her hair down and loose. I had to tell her to put it up, which she did and then completed her task.
I found hospice staff do listen to the caregiver and friends. To address the issue above they allowed me to sit in on a weekly staff meeting and discuss it and a couple of others that had arisen. In the short time I was there they listened and the doctor on the staff reiterated how important it is to follow best practices.
Hospice CNAs are quite important to the overall care of the patient. It is the CNA who helps the caregiver give the patient showers, clean and dress any wounds or open sores and keep the patient’s immediate environment as clean and orderly as possible. The several CNAs who rotated through our house for the six months they served us did a very good job being my “right hand person.”
More importantly, the CNA who had the most profound impact on my wife and me made a special effort to help her feel as much like a woman as possible. Early in the disease progression I had learned how to put earrings in pierced ears and brush hair, and even practiced a few times putting on fingernail polish – not so good at that! The CNA came in and immediately understood there’s more to being a woman than earrings and brushed hair. She would brush and style the hair, put on lipstick and paint her fingernails for those days when visitors would come over or when my wife had a rough night. She did her best to ensure the “best QoL” mantra was followed.
All through this time the hospice social worker and nurse made their regular visits. The nurse’s job was to check vitals and any sores or injuries the patient suffered and ensure there was the needed supply of medications. The nurse would order the meds and bring them to the house, allowing me the opportunity to stay home and be with my wife. The social worker was also a regular and her goal was to help us with our bad days and to be another caring individual with whom we could share those feelings that arise when dealing with a terminal disease known as “Parkinson’s on steroids.” We both looked forward to her visits.
As I noted above, hospice is certified when the doctor ascertains the patient has about six months to live. Sadly in our case, entry into hospice turned on the death clock and six months to the day my wife passed. That day the CNA was not scheduled so it was just a good friend and I who were there as my wife passed peacefully. I immediately called the nurse and within 15 minutes he was there to certify death. Hospice staff called the funeral home to come pick up her body and ensure all her final wishes were met. The social worker arrived to make sure I was doing okay and see if she could be of help. To the end of this six-month saga hospice served us well.
Hospice can benefit both the patient and the caregiver
Caring for a terminally ill patient is difficult no matter the disease. In the case of MSA, a relentless and devastating disease, caregiving is 24/7 during the last months of life. Support both emotionally and medically becomes so important to the health of both the patient and the caregiver. Hospice care can be an integral part of that support. I hope your experience is a good one and encourage you to share your story so that others can understand the positive role hospice care plays. With a goal of “best quality of life possible” hospice can help attain it. I hope your hospice experience meets that goal for your loved one.
by MSA Coalition | Sep 17, 2019 | MSA-Blog
Guest Blog by MSA patient
Jackie Vandenberg I wrote this letter to my friends and family so they would better know how to communicate with me due to speech issues associated with multiple system atrophy. Others might find it helpful in communicating with their loved ones as well.
Dear friends and family,
I always appreciate when friends and family come to visit. I noticed lately that some people struggle knowing how to talk with me as my ability to communicate decreases. I have brainstormed a few things on how to communicate with me and other MSA patients struggling with the speech:
1) I enjoy socializing even though I cannot speak back. I’m interested and am listening when others tell me about themselves. I like to hear about how people are doing, their families, hobbies, vacations, experiences, weekend activities, etc.
2) I wish to be spoken to as a person and an adult. Please speak to me normally by not using slower or louder speech, or a reduced vocabulary and sentence structures. I like to be part of the conversation by making eye contact and being spoken to directly.
3) It’s easier/quicker for me to be asked ‘yes’ or ‘no’ questions.
4) When we’re together you can talk or not talk, either is fine. I’m comfortable with quiet too.
5) I use a piece of cardboard with the alphabet written out to communicate, we call it a Ouija Board. I can point to letters to spell out words. I need someone else to hold the cardboard and adjust it as I go. It can take a while for me to spell out sentences so I appreciate everyone’s patience. It’s ok if you don’t understand a word the first few times, as Tom and Adrianne can attest to.
6) When I’m using the Dynovox communication device it’s ok to fix letters/autocorrect for me.
7) A symptom of MSA is excessive drooling. If you’re comfortable doing so you can use a tissue or washcloth to wipe my mouth.
8) The best way to contact me to make plans is on Tom’s cell phone through call or text. I check my email and Facebook messenger every couple of days and am happy to get messages there too.
I hope these eight tips on how to communicate to those with MSA are helpful for everyone! I love having friends and family visit and appreciate all of our time together.
With Love,
Jackie
A Multiple System Atrophy Awareness Video
Featuring Jackie VanDenberg
About The MSA Coalition
The Multiple System Atrophy (MSA) Coalition is a 501(c)(3) charitable organization with a 30-year history of devotion to improving the quality of life and building hope for people living with MSA. The four pillars of our mission include:
Education: Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information.
Trusted Emotional Support: Providing patients and caregivers with trusted and compassionate emotional support.
Community: Building a sense of community by connecting and unifying people affected by MSA.
Funding Patient-Centric MSA Research: Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure.
by MSA Coalition | Mar 15, 2019 | MSA Coalition Press Releases
The MSA Coalition has embarked on a partnership with Charity Footprints Inc. and other MSA charities to recruit a team of 250 walkers and fundraisers for its Global MSA Walkathon. The goal of this virtual charity walk is to cover 52,000 miles and raise $250,000 between March 15, 2019 which is during MSA Awareness Month and October 3, 2019, which is World MSA Day. Team members track their steps via a wearable fitness tracker or a smartphone app while walking locally at a time and place of their choosing.
CHARLOTTE, NC – The Multiple System Atrophy (MSA) Coalition today announced that a multi-charity collaborative effort is now in progress to recruit at least 250 walkers around the world. Using an innovative Virtual Racing platform from Charity Footprints Inc., the team of walkers track their daily steps via a wearable fitness tracker or a smartphone app. In real time, participant steps are being tracked on the Global MSA Walkathon Map. The goal is to walk 52,000 miles around the world while raising $250,000 by World MSA Day, 2019. Along the way, the team will virtually visit important MSA research centers, treatment centers, and other MSA charities. The walk will begin on March 15, 2019 to commemorate MSA Awareness Month. Walkers can begin signing up for the virtual event on March 15, 2019.
“The walkathon is viewed as a critically important event for bringing MSA charities together on a global awareness initiative. As a rare disease, the best way to build awareness for the plight of those affected by it, is to activate the MSA community as a whole into a unified event,” stated Don Crouse, Vice Chairman of the MSA Coalition. “In partnership with Charity Footprints and other MSA charities we are able to create one strong voice to inform the world about Multiple System Atrophy. At the same time, we are hoping to recruit new advocates and fundraisers so that we may be able to increase our impact on improving the quality of life for those affected by MSA. Our goal is to continue building hope that someday disease altering treatments and a cure are found.”
The following MSA charities are collaborating in this Global MSA Walkathon: MSA Trust (UK), MSA-AMS (Belgium), MSA NJ (USA), Cure MSA (USA), the Rex Griswold Foundation (USA), Blandford-Rees Foundation (USA), and Move Over MSA (USA).
“AMS-MSA Belgium is looking forward to the Global MSA Walkathon virtually visiting us. The walkathon is an important awareness initiative as we continue to fight multiple system atrophy,” said Ritje Schouppe-Moons, Chief Executive of the AMS-MSA Belgium, organizer of the yearly’JiePie Award for MSA Research’ and Spokesperson for World MSA Day, observed on October 3rd. “Collectively we count miles/kms walked and attempt to circle the globe. All to symbolize our unity in the fight against MSA. We continue to be committed to working collaboratively with our MSA colleagues on important initiatives that lead to the advancement of knowledge around understanding MSA and supporting those living with MSA, their families, and care partners. We very much appreciate the collaborative team-building efforts of the MSA Coalition in this regard.”
“MSA NJ is very excited to be a part of this amazing team of MSA stakeholders. The fundraising and awareness generated for multiple system atrophy will certainly help the cause.” said Kymberli Roemer, Chairperson of MSA NJ. “The MSA Coalition has been a leader in facilitating collaboration among MSA charities. The Global MSA Walkathon is is an excellent example and we hope it becomes an annual event that truly makes a difference. We are proud to be a part of the team and hope to see New Jersey well represented among the walkers and fundraisers.”
The Global MSA Walkathon is being powered by Charity Footprints, an innovative platform designed to promote fitness and encourage charitable giving. Because MSA is so rare it is very difficult to organize in-person charity walks and other live fundraising events. We are confident that this virtual event will motivate people to become MSA advocates and fundraisers, and will provide a jolt of energy to new volunteer recruitment. A key feature of the platform is that it allows people to gift registrations to other family members, friends and colleagues – through a Pay-It-Forward integration. MSA strikes in the mid-part of life with a typical onset age of 45-65 years. As such, the MSA Global Walkathon offers an opportunity for younger generations to fundraise in honor or memory of a loved one with MSA.
“Charity Footprints is thrilled to be the official technology partner of the Global MSA Walkathon,” said Rahul Razdan, the Chief Executive Officer of Charity Footprints Inc. “It is extremely rewarding to see our platform being used by an ultra rare disease community to build awareness and collaboration on a global scale. Multiple System Atrophy Coalition is our first non-profit partner to undertake a walk around the world and we wish them nothing but success. We will be cheering loudly as they near their fitness and fundraising goals!”
A successful Global MSA Walkathon will allow the MSA Coalition to increase its funding for worldwide initiatives to better understand and treat Multiple System Atrophy. Over the past 4 years, it has awarded $1.6 million to fund 36 research grants from around the world aimed at identifying diagnostic biomarkers and potential treatments. The Coalition has been the primary sponsor of multiple International MSA Congresses, the American Autonomic Society Congress, and the European Federation of Autonomic Societies Congress, and has awarded travel grants to many young MSA investigators. The MSA Coalition is currently developing a new research program to better target its funding efforts towards meaningful progress in improving diagnosis and treatment options.
“We are extremely excited to embark on this unifying walk around the world. The MSA Coalition prides itself on our strong track record of working collaboratively with MSA charities, researchers, autonomic centers of excellence, and corporations. Since hosting the 1st Global MSA Advocacy meeting last year, we are eager to maintain momentum on joint activities for the MSA cause. Our walk will highlight our collaborations as we “virtually” visit each partner in the fight against MSA,” said Dr. Cyndi Roemer, Chair of the MSA Coalition. “Another very exciting aspect of the Global MSA Walk-a-thon is its potential appeal to multi-generational participants. One of our hopes is to see the parents, siblings, children and grandchildren of multiple system atrophy patients walking and fundraising for the MSA community. Together, we can make progress as we enhance quality of life, while building hope for those living with MSA.”
Join the Global MSA Walkathon or support it with a donation! The Global MSA Walkathon is also seeking corporate sponsors and has several sponsorship packages available.
by MSA Coalition | Feb 28, 2018 | MSA-Blog
Did you know multiple system atrophy (MSA) is one of approximately 7,000 known rare diseases? Additionally, about 80% of MSA patients have a secondary rare disease, neurogenic orthostatic hypotension (nOH), which is low blood pressure upon standing. While only 13,000 Americans or so have been diagnosed with MSA at any given time, 30 million Americans or 10% of the U.S. population suffer from these often misdiagnosed and often poorly understood conditions. Of course, the numbers are much bigger when the entire world is included.
According to the National Organization for Rare Disorders (NORD), “People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES.”
Does NORD’s statement ring true for your process of being diagnosed with MSA?
We often hear that it takes as many as 4-5 years for those with MSA to be accurately diagnosed. Often, a diagnosis of Parkinson’s disease is first made, but it progresses much faster than PD and prescribed treatments are less effective.
Were you first diagnosed with PD?
How long did your MSA diagnosis take from first symptoms?
If you are frustrated with how long your diagnosis took or a lack of treatments and a cure for MSA, then Rare Disease Day is for you. Rare Disease Day offers the opportunity for all those affected to band together, millions strong, to raise awareness. On this day, the MSA community with thousands of affected families can amplify our voices and make a difference. Whether it’s explaining to your network what it is like to suffer from a little-known disorder or writing to your representatives in Congress asking for more research, you can make a difference. Together. with the other 7,000 rare diseases, the noise will make a difference. But… you need to participate!
What will you do on Rare Disease Day today to help raise awareness for MSA, nOH, and rare disorders as a whole?
“Rare Disease Day® takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives.” As a person with or affected by multiple system atrophy, it is critical that your voice be heard. So, whether you are a patient or have a loved one with MSA, it is time to speak up. Share your story on your Facebook page and be sure to tag both the MSA Coalition and NORD. We also encourage you to visit NORD’s Rare Disease Day website and to use their various tools to raise awareness for MSA and all rare diseases.
Awareness tip: When advocating, don’t just say MSA, instead say or spell out multiple system atrophy.
by MSA Coalition | Oct 1, 2015 | MSA Coalition Press Releases
Greater collaboration and financial growth give hope of a research breakthrough for multiple system atrophy, a devastating and rare neurodegenerative disease.
Charlotte, NC – October 1, 2015: The Multiple System Atrophy Coalition has announced its latest round of funding for researchers pursuing a cure for the devastating neurodegenerative disorder multiple system atrophy (MSA). Ten grants were awarded totaling $422,000. The research projects and recipients are as follows:
- • “Global MSA Registry & Natural History Study”: Gregor Wenning, M.D., Ph.D. (Innsbruck Medical University) and Lucy Norcliffe-Kaufmann, Ph.D. (New York University)
- • “Combination of immunotherapy against alpha-synuclein and anti-inflammatory treatment for Multiple System Atrophy”: Eliezer Masliah, M.D. (University of California San Diego)
- • “Targeting a-synuclein pathology with the molecular tweezer CLR01 in MSA”: Nadia Stefanova, M.D, Ph.D. (Innsbruck Medical University)
- • “Understanding the degradation of alpha-synuclein protein in MSA”: Janice Holton, M.D, Ph.D. (University College of London)
- • “Mechanisms of Selective Neuronal Death in MSA: Focus on blood pressure controlling areas”: Eduardo Benarroch, M.D. (Mayo Clinic Rochester)
- • “Gene expression & methylation as a route to MSA biomarkers and drug targets”: Henry Houlden, Ph.D. (University College of London)
- • “Glucagon like peptide-1 agonists for treating MSA: a preclinical POC study”: Wassilios Meissner, M.D, Ph.D. (University of Bordeaux)
- • “Defining diagnostic brain MRI markers in early MSA with a novel toolbox”: Florian Krismer, M.D. (Innsbruck Medical University)
- • “Preclinical Evaluation of Novel Therapeutic for MSA”: Ruth Perez, Ph.D. (Texas Tech University Health Sciences Center)
- • “Detection of pathological alpha-synuclein aggregates in CSF by qRT-QuIC”: Armin Giese, M.D. (Ludwig-Maximilians-University Munich)
“We are very excited and proud to announce the latest MSA research grant recipients and we are thrilled with the growth of The MSA Coalition’s research grant program”, said Judy Biedenharn, President of The Multiple System Atrophy Coalition. “The depth of talent in the scientific community and their willingness to partner with us to bring those talents to bear on solving multiple system atrophy is very encouraging. We are ever mindful of the sense of urgency that exists for MSA patients everywhere.”
The MSA Coalition more than doubled the number of grant proposals received this year over last. Projects submitted included explorations of new biomarkers that might allow earlier and more accurate diagnosis, genetic studies, pre-clinical validation of potential disease modifying drugs in transgenic mouse models as well as important pathological studies pursuing the underlying cause of MSA. Several of the awarded projects were collaborations involving multiple MSA research labs around the world including the United States, Austria, France, Germany and the UK.
“It was particularly exciting to receive so many collaborative proposals this year”, stated Pam Bower, Board Secretary and Research committee co-chair. “Collaboration is something The MSA Coalition works to actively encourage and this was facilitated by our participation at several high profile scientific conferences this past year including the Las Vegas Global MSA Research Roadmap meeting (inspired by the late MSA advocate and “Iron Chef”, Kerry Simon) and the Alpha-Synuclein Symposium in Innsbruck, Austria which attracted representatives from the Michael J. Fox Foundation.”
As a result of these connections, The MSA Coalition has become recognized globally as a change agent in the search for a cure not only for multiple system atrophy but for other related alpha-synuclein diseases. This heightened recognition has also attracted larger investments from organizations and individuals. A generous anonymous donor was inspired to give $100,000 to the MSA Coalition in 2015 which was earmarked 100% to research. The MSA Coalition is now encouraging named grants to be established with the organization in honor or in memory.
This year the MSA Coalition has received a huge boost in support through their partnership with the Blandford-Rees Foundation. Kirk Blandford, Trustee of the foundation explains, “The Blandford-Rees Foundation issued a challenge in 2015 to match dollar for dollar all designated MSA Coalition research funds received up to a maximum of $50,000. It was Jim Rees’s (a former MSA patient) wish to encourage greater research funding to support finding a cause and a cure for multiple system atrophy and I am pleased his desire to give others hope through research is being facilitated by the MSA Coalition as a recipient of this matching challenge grant.”
“The research awards we have provided thus far are “seed grants” of up to $50,000 each and are intended to jump start MSA research allowing these projects to generate enough preliminary data to warrant future funding from the larger research funding agencies”, stated Carol Langer, CPA – Board Treasurer and Research committee co-chair. “Thanks to the generous support of so many donors, both here in the US and overseas, we were able to nearly double our research budget over last year. We look forward to our continued financial growth and increased collaboration with research funding partners and scientists alike.”
The Multiple System Atrophy Coalition first established a dedicated MSA research fund in 2011. In 2013, the organization launched its MSA Research Grant Program and recruited a world class Scientific Advisory Board (SAB) made up of leading scientists and clinicians in the MSA field. The goal of the MSA Research Grant Program is to identify and fund MSA research projects that have potential to uncover the cause, discover disease modifying treatments, and hopefully lead to a cure. Through a rigorous peer review process, the SAB ensures that The MSA Coalition is funding the most promising next steps that can lead to breakthroughs in MSA research. At present, a minimum of 75% of every donation received by The MSA Coalition goes directly into the research fund. The remaining 25% goes toward much needed support and education programs including a toll-free support hotline (1-866-737-5999), educational materials, an annual patient/caregiver conference (also live-streamed on the web), continuing medical education about MSA for healthcare professionals as well as important advocacy and awareness initiatives.
