by MSA Coalition Comms | May 2, 2023 | MSA-Blog
By Elizabeth Turcza, MSA Coalition Director of Development
Over a month ago, I was connected to the San Manuel Gaming and Hospitality Authority, a governmental instrumentality of the San Manuel Band of Mission Indians, through Chef Luke Palladino, a friend of Chef Kerry Simon, who lost his battle to MSA in 2015.
Yawa’ is a concept that the San Manuel Band of Mission Indians have embodied throughout their history, and in recent years, Yawa’ has become known to the wider community through their philanthropic giving, having awarded over $300 million in philanthropic giving, since 2003. In working with the San Manuel Tribe and understanding our areas of alignment, the MSA Coalition was given the opportunity to apply for a $25,000 grant that contributes towards the MSA Coalition’s work providing education and access to information for those either diagnosed with MSA or looking for a diagnosis.
It is my privilege to announce the receipt of a $25,000 grant from the San Manuel Gaming and Hospitality Authority (SMGHA) towards the MSA Coalition’s educational initiatives.
In addition to the contribution, I was invited to attend the opening of the Laguna Kitchen in Las Vegas, meet with Chef Palladino and the San Manuel Tribe’s Former Chair Carla Rodriguez, and bring awareness to the MSA Coalition’s work and those affected by MSA.
In speaking with San Manuel’s philanthropic director, Alberto Jasso, we discussed at length the challenges facing those with limited access to healthcare in smaller communities. Our shared goal is to spread awareness and provide information for those who think they could have MSA or show symptoms of a movement disorder, so that they know what to ask their doctors, when it’s time to see a neurologist, and what to do if their Parkinson’s diagnosis doesn’t seem to quite fit their symptoms. Access to potentially life-prolonging healthcare information needs to be available for all, no matter who you are or where you live.
The generous donation of $25,000 towards the MSA Coalition’s work by the San Manuel tribe is deeply appreciated and I look forward to continuing our partnership going forward.
The MSA Coalition relies on the generous donations of our supporters and partners to continue advocating for the MSA community. Make an individual contribution here in support of our work.
If you are interested in a corporate partnership with The MSA Coalition, contact Elizabeth Turcza, elizabeth.turcza@staff.msacoalition.org.
by MSA Coalition Comms | Apr 28, 2023 | MSA-Blog
By Julia Freifield
I wrote In Each Other’s Bones: A Memoir of Love, Loss, and Living about my role as caregiver in my husband Mark’s battle with Multiple System Atrophy (MSA). Coming out of the recent March MSA Awareness Month, it seems timely to share part of our story through the book excerpt below.
From the book’s chapter “Keeping a Secret”:
As Mark’s health changed, he felt he could take care of his health by himself. He believed he could stay ahead of whatever physical problems were cropping up by being informed and connected to doctors who could help. He made a conscious decision to not burden others. He didn’t want his illness to be the topic of others’ conversations or speculations. It also gave him a feeling of control in his life during a time when he didn’t have control. I respected his decision and obliged. Sometimes, keeping a secret with someone is a bonding experience; two people sharing personal matters can feel intimate.
Yet I felt torn. Who’s secret was it?
I had to remind myself I wasn’t intentionally withholding information. I was guarding Mark’s privacy. My promise to Mark was bigger than my bottled-up feelings of worry and fear. Before we told our children, were they noticing changes in their father? In 2008, while on a family vacation, Emily stumbled upon Mark’s catheters. She didn’t know what they were and didn’t ask any questions. It was years later that she admitted to finding them. Since we held back any explanation, did our children feel betrayed? We raised them to talk things through and tell the truth, but talking about illness and death is tricky. And not everyone is up for those kinds of conversations. I really didn’t know how to talk about what was happening.
I have often been other people’s secret keeper. Friends and strangers have confided in me my whole life. Mark and I didn’t plan on keeping a secret like this for as long as we did. The years crept up on us. Denial is a wonderful thing. It was like a drug I kept trying to swallow. However, by keeping my feelings locked deep inside, I was allowing them to snowball into something larger. Keeping Mark’s secret became harder as every day, every week, every month, things were getting scarier. I was torn between protecting his privacy and releasing my own overburdened emotions. To cope, I began meeting with a therapist. It was the first time I had told anyone what was going on. My therapist and I discussed my need to begin sharing my worries, sadness, and fears with a few select friends.
Shortly after, a friend asked about Mark. I couldn’t pretend anymore. I broke down. Everything poured out of me so fast and strong, I couldn’t stop talking and crying. My sobs were gigantic. Some words describing Mark’s symptoms were so hard to say aloud, I had to whisper them to her. This was the first crack in the dam.
By talking to my therapist and opening myself up to friends, I experienced many difficult yet honest conversations. I was becoming more real with myself and others. My relationships with family and friends deepened and grew, rather than collapsed as I had feared. I was beginning to understand that when we share troubles, we learn the beauty of genuine friendship and are able to make true connections.
Telling our children about the neurological symptoms was the beginning of letting them see me not just as a mother, wife, and caregiver but as a human being moving through life with heartache and happiness. I was showing them it can be done. Initially, keeping the secret was like building a small house that just the two of us squeezed into. Eventually, the small house was expanded, and we gently brought our children into our little world, along with family and close friends. Our commitment to each other as this house grew didn’t waver.
My independent streak needed to soften, because there was no way to get through Mark’s illness alone. By allowing others to see me at my saddest and most vulnerable, I felt connected to others, particularly my children. By removing the barrier I built around myself, I grew.
About Julia Freifeld
A classically trained fine artist, Julia earned her degree from Boston University in painting and printmaking. After studying in Paris, she worked as a scenic artist for Disney Studios in Los Angeles. She now lives in Raleigh, NC. In Each Other’s Bones is available on Amazon, where it reached #1 in Marriage and Family, Grief and Bereavement, and Parkinson’s Disease categories. Learn more at juliafreifeld.com
by MSA Coalition Comms | Apr 28, 2023 | MSA-Blog
By Teresa Baker
I heard my daughter’s panicked voice cry out “NO” as I lay on the gurney in the emergency room trying to make sense of what the movement disorder specialist was telling us on the telemedicine screen. He had my records from my doctor and was fully agreeing with my neurologist; but I couldn’t understand what he meant by “failure to thrive” and “MSA of the Shy-Drager type.” What was he saying? I slept all weekend and was dehydrated; what’s so upsetting? I also had something called encephalopathy; no clue as to what that meant. Why was my daughter crying and why was she saying I needed a nursing home? We had an agreement.
There was a lot of activity, needles poking and prodding me, attempting to start IVs to give me fluids, my daughter sobbing, repeating over and over “I can’t do this, I can’t take it.” My granddaughter saying, “It’s going to be okay Mom, don’t cry”. I tried to comfort my daughter telling her I’m just dehydrated. Complete chaos because I didn’t understand.
A few days later, after speaking to my physician sister and nurse sister I reluctantly understood failure to thrive and encephalopathy. Now I was seeing my neurologist and learning about MSA. I thought at one point I had stopped breathing; they must be mistaken; surely this is not right.
When I went into the nurse practitioner’s office, I asked if this is true. How am I going to tell my children? She matter-of-factly said “I have 3 cups in my hands each filled with a different kind of deadly poison. No matter which one you drink, the final result will be the same.” I said I can’t tell my children that. She stated that facts are facts.
That was the beginning of my journey into Multiple System Atrophy. It was September 27, 2021.
Since then, it seems like every system in my body has had a problem, including my eyes. I no longer know what’s happening or why. I have pacemaker for a fairly rare heart arrhythmia, heart failure, kidney failure, gastroparesis and other digestive problems, and the list goes on. I’m already using an electric power chair at least part of the time. I’m on oxygen at night with a BiPAP machine, restrictive lung disease, and one terrifying episode of “flash pulmonary edema with dyspnea,” which is often fatal.
Listing everything would take a lot of room, but hopefully the point is made. Living alone has been sometimes very anxiety-provoking, and other times I can only grieve about all I have lost. At the same time my sense of humor borders on out-of-control, mostly because I would rather laugh than be frightened or anxious. It is with humor, then, that I wrote the following poem, which is factual but meant to be fun as well.
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THE BRAIN ISN’T COOPERATING
Cooperating less, my brain leaves me in a mess; my legs don’t like to do the job when they try to walk; my hands do clumsy, awkward things when I try to cook; my mind knows what it wants to say but my mouth just will not talk.
My bladder gets much flatter before I make my run and falling down upon the floor just isn’t any fun. A shower is exhausting and leaves me tired out and by the time I’ve gotten dressed, I must take some time to rest.
My stomach takes its time to move my dinner through, and by the time it’s over I’m nauseated too.
by MSA Coalition Comms | Apr 4, 2023 | MSA-Blog
By Oscar J. Groebl, Jr.
I came to know Janet Lee Claus after her diagnosis of MSA. Janet was my aunt-in-law. I was already familiar with Parkinson’s from being a caregiver and POA for my cousin.
Janet was already showing signs of the devastation of MSA but was still able to live at home with the help of a caregiver and friends. It was clear, however, that her independence was quickly leaving. Moving into a facility was approaching quickly.
Finally, it was necessary to make the move. The process of closing Janet’s home and holding her estate sale made it clear what Janet had lost to MSA. The amount and variety of art supplies and craft materials, combined with half-finished projects and the completed works of art showed that MSA had robbed us of a true genius.
Janet insisted that we take some of her materials and tools with her into the facility. She was determined that she could still express herself and undertake small projects.
Sadly, Janet would never be able to put her creativity and skills to projects again.
The progression of MSA in Janet was overwhelming. Each day showed greater loss of her creativity and skills, but also the basic skills of life. Eventually Janet slipped into a coma, needing oxygen, and then finally admitted into hospice. Janet passed away quietly around 11 PM on Sunday, November 13, 2022.
I had the honor of holding Janet’s hand, speaking softly to her about her meaningful life, reassuring that her parents were welcoming her to join them. Janet’s last breath was peaceful and welcomed. I felt happiness for her but was selfishly sad to lose her.
The most meaningful, yet difficult task came the next day when I went back to the facility to gather Janet’s few remaining belongings – her few pieces of jewelry, family photos, craft supplies Janet was never able to use, and a few pieces of clothing.
The amusing part was finding dozens of bags of peanut butter cups. Janet lived on them toward the end. Peanut butter cups and Coke-a-Cola kept her going and brought Janet joy.
We all know that life is short and bitter-sweet, but experiencing what I did with Janet turned what I “knew” into what I “feel.” The personal impact of Janet’s MSA-related death was enormous. I will never be able to forget that life is truly short and bitter-sweet!
MSA is a cruel and unforgiving disease. It impacts far too many bright, loving, and talented people. Whatever any of us can do to contribute to MSA research is important.
Janet herself made a big contribution to that effort with her donation of brain tissue to the University of Maryland Brain and Tissue Bank to help understand and eventually develop treatments for MSA.
I personally encourage us all to do what we can so that others, maybe even ourselves, can be saved from facing Janet’s conditions and fate. Janet suffered much but left behind so much. For what Janet left behind, I am personally grateful.
by MSA Coalition Comms | Apr 4, 2023 | MSA-Blog
By Cathy Chapman
One of the autonomic functions that can be affected by MSA is the digestive system. Gastroparesis occurs when the stomach delays emptying due to poorly functioning muscles. It basically paralyzes your stomach, making it difficult to digest food and pass it to your intestines, which can lead to food sitting too long in your stomach. Some people with gastroparesis have few or mild symptoms, and others can find it to be very uncomfortable or painful.
Common symptoms of gastroparesis:
- Nausea
- Feeling full after only a few bites
- Loss of appetite
- Bloating
- Vomiting
- Acid Reflux
- Weight loss
- Dehydration
While there is no direct cure for gastroparesis, there are some changes you can make to your diet to get some relief. Here are a few things that I have found to be helpful and experts recommend that can help with the management of gastroparesis symptoms:
- Eat smaller meals four to six times a day instead of three big meals.
- Limit your intake of fatty foods.
- Avoid raw vegetables.
- Avoid red meat.
- Avoid nuts and beans.
When especially symptomatic (experiencing a flare-up), following a liquid diet can help alleviate symptoms. A few things that are most effective to get your nutrition on this diet include:
- Smoothies
- Pureed soups
- Yogurt
- Broth
- Gelatin
- Thin hot cereal
A good basic smoothie that I like is the recipe below.
Blend together and enjoy:
½ cup milk, or almond milk, or rice milk (my personal favorite)
1 scoop protein powder (my personal favorite)
½ cup frozen fruit of your choice
Another helpful remedy is drinking ginger tea. Ginger increases motility and can relieve the discomfort of nausea.
This is basic information about gastroparesis and is meant to provide tips and general guidance to alleviate pain and discomfort. If you are experiencing digestive pain or discomfort, speak with your doctor to determine your best course of action together..
by MSA Coalition Comms | Mar 8, 2023 | MSA-Blog
By Andre Cote-Barch, MSA Coalition Care Partner Representative
I will never forget the emotional call I received from my father while I was at work. My mother was diagnosed with a degenerative neurological disorder and had an undetermined life expectancy. I was only 23 years old and had to begin grappling with the idea of life without my mother. I had just moved across the country to pursue a career in finance and was now faced with a whole new set of factors and priorities.
After several years of confusing symptoms that did not seem to have an identified cause, she was referred to a stroke clinic where she was initially diagnosed with Parkinson’s Disease. However, after an MRI showed findings suggestive of MSA-P, she started to investigate further. After visiting eight different doctors, the diagnosis of MSA-P was finally made. There was some comfort in having an explanation for my mother’s symptoms. Even so, this health outcome did not make sense in my mind. Hadn’t my mother ‘done all the right things’ when it came to her health and mental agility? She had always prioritized wellness, exercised regularly, and even re-explored her childhood passions of ice hockey and ballet while in her 40s and 50s. In her professional life, she diligently navigated medical school and served as a forensic psychiatrist for members of our community and our armed forces. In her personal life, she made time to raise my sister Margot and me.
As a caregiver and son, I have witnessed how the disease has impacted our family. At first, my mother carried on with her normal routines and maintained her busy work schedule. She fought the illness by changing her diet to organic foods and exercising with more frequency and intensity. She initially traveled with ease to destinations including France, Las Vegas, and Prince Edward Island with our family. She also found a support network and continued to learn about her illness by traveling to The MSA Coalition conferences in Orlando and San Francisco. Over the years, the illness has continued to impact her independence and livelihood. She had to resign from her role at the hospital and her home has been adapted to support her mobility. She requires assistance with daily tasks including walking, cooking, eating, and basic hygienic tasks.
Despite these adversities, my mother continues to be a fighter and maintains her adventurous spirit. This determination led her to succeed in our mother-son dance at my wedding in New York this past July. I admire my mother’s strength and determination over the past 7 years to slow the progression of this disease. While my role as a caregiver has continued to expand, it has also allowed me to spend more time with my mother as well as my father and sister who also provide caregiving. I am grateful that our family closeness, faith in God, and support for one another have continued to grow throughout this experience. I am thankful that the MSA Coalition continues to provide my family with a community of support, research initiatives, and a platform to spread awareness about the illness. As the care partner representative of the Board of Directors of the MSA Coalition, I look forward to continuing to learn about MSA and finding creative ways to support MSA patients and their caregivers.
