By Cathy Chapman, MSA Coalition Patient Representative
The MSA Coalition Annual Patient & Family Conference will be held virtually this year September 29-Oct 1, 2022 with some resources and videos becoming available a few days before.
By participating in this virtual event, you will be able to gain knowledge from top medical professionals from our host facility UT Southwestern Medical Center, connect with others in our community, and know that you are not alone on this journey.
I fully believe that knowledge is power. The more we can learn about MSA, the more it can help us to have power over the daily challenges we face, as well as help us to identify useful tools and resources to manage symptoms.
I highly recommend attending this conference if you are able to do so. Registration information will be made available soon. Until then, review materials from conferences in previous years.
On Thursday, July 28, the U.S. House of Representatives introduced the first-ever legislation solely devoted to ending Parkinson’s disease and atypical parkinsonism’s, including multiple system atrophy. This is a historic moment for our community!
The National Plan to End Parkinson’s Act will, for the first time, unite the federal government and private enterprise in a mission to prevent and cure Parkinson’s, alleviate financial and health burdens on American families, and ensure those living with the disease have access to the care they need.
This bipartisan legislation is led by Representative Paul Tonko (D-NY) and Representative Gus Bilirakis (R-FL). The Michael J. Fox Foundation (MJFF) and Parkinson’s community are thankful for their leadership.
This bill will go through the traditional congressional process and will need to be voted on by the House. Soon, The MSA Coalition will be providing support and templates to email your elected officials and encourage them to support this important piece of legislation.
The Michael J. Fox Foundation is working with two Senators to introduce the Senate’s companion bill in the coming weeks, because it is standard congressional procedure for both chambers of Congress to pass the bill before it can go to the President for signature.
Why a national plan and why now?
Parkinson’s (including atypical Parkinsonism’s) are diseases that require a national effort to cure and prevent. A national plan 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.
The public-private advisory council created as part of this legislation will report every year to Congress on their progress and impact in ending Parkinson’s. This is the kind of forward-looking strategy and responsible accountability the Parkinson’s community needs and deserves.
We will update this blog as the legislation advances through Congress, so stay tuned!
How will The MSA Coalition support this bill?
The MSA Coalition is a member of the Unified Parkinson’s Advocacy Council (UPAC). Comprised of representatives from state, regional and national Parkinson’s organizations, the UPAC works with community members to gather information on the priorities of people with Parkinson’s and their families, helping to ensure the needs of the broader Parkinson’s population are represented in MJFF’s public policy efforts.
The MSA Coalition will be working closely with UPAC and the Michael J. Fox Foundation to advocate, educate, and increase awareness of this important legislation to elected officials. We will be providing additional resources to equip our community with easy-to-use templates and tools to communicate with members of Congress soon!
If you have any questions, please contact Joe Lindahl, MSA Coalition Executive Director, at firstname.lastname@example.org.
By Anne Marie Foytick
I am here to tell you about an incredible man and his current battle with Multiple System Atrophy (MSA).
My father, Edward Sierawski, began to have symptoms just over 10 years ago. Balance was the first and most prominent symptom, which became cause for concern. Over the next 5 years, those symptoms progressed and still he had no diagnosis. Finally, in 2016, after many years of doctor visits, tests, therapy, medications, etc., doctors were able to diagnose my father with MSA. It was a complete shock. He was a healthy man with little to no medical history and so much more life to live. We were told all the things to be prepared for and the average life span. The first few months were difficult as we tried to comprehend what exactly MSA is and what was to come. We learned MSA is a painful and frustrating degenerative condition that not only affects the individual with the condition but their family and friends that surround them.
Since his diagnosis, my father has had to give up some of his favorite things to do.
Work: My father started his own business at the age of 40 and has inspired so many throughout his life. He loved being able to teach and help others grow. He has always shown what hard work and taking risks looks like.
Golf: My father has played golf since he was a young man, and it has been one of his favorite activities. Not being able to balance made golfing difficult. Golf was not just a hobby but was something that he loved doing with his brothers, friends, and kids. I have been fortunate to be able to play with my father on many occasions in the past. They are some of my favorite memories with him.
Speech: My father spoke for a living. My father was in sales for many years before he started his own business. He trained people on how to do their jobs better and to be successful. He always had a way with words whether it was work or if it was expressing his love for his family and friends. It was incredibly hard to see a strong, hardworking, social man lose some of the things that made him most happy.
With MSA, it is not easy to see the positives in life at times while enduring a dark and painful condition. But even the darkest of storms bring rainbows. Although my father lost the ability to work, he was able to pass on his legacy to my brother, John, who now owns and runs the business. He still provides valuable advice and guidance to my brother as he learns the ropes of owning a business.
Even though he cannot golf physically anymore, my brothers have been able to take my dad with them out on the golf course a few times to smell the grass, feel the breeze, and be able to join in on the banter and even give some unwanted criticism.
Losing his speech and ability to move freely have been the toughest changes that have come with MSA. But on a beautiful October day in 2020, my father was able to escort me down the aisle. He was able to have his one and only father-daughter dance with the help of his scooter and was able to give a beautiful father-of-the-bride speech with the help of a speech app.
My father has fought tooth and nail to stay in this world with his wife of 44 years, his three children and his son-in-law. He has done every medical treatment you can think of and then some. He has traveled around the country to receive any and all help he can to prolong his life and to be here with his family. Therapy, spiritual healing, medication, stem cell treatments, you name it.. He has done it! To this day, he is still able to eat on his own, has some speech left, needs assistance transferring from his scooter to his bed or chair, and is making sure he is here as long as he can be. And that is all we can ask for from him.
If I can give any advice to those with a family member or friend that has MSA, I’d tell them to stay positive, spend time with them, and keep them involved. Be there for that person. Make them laugh. Cry with them. Whatever time you can spend with them is precious. One personal example I can give is watching sports with my father. My dad has always loved Michigan State sports, so being able to just sit and watch a football or basketball game with him is something I cherish so much. We even played the Michigan State fight song at my wedding.
I have had 36 wonderful years being my father’s daughter and pray for as many more as the Lord will give us. He continues to be the best father in the world to my brothers and me. He raised my siblings and I to be strong, independent, and confident people. He has always provided for his family even to this day and has loved us all unconditionally. How lucky are we to call him Dad?
By Cathy Chapman, MSA Coalition Patient Representative
It is documented that fatigue is a symptom of MSA and is prevalent in the early stages while remaining persistent over time.
Everyone experiences MSA symptoms differently, and fatigue is no exception. Here are some signs to be mindful of:
- Weakness or feelings of heaviness, especially in the arms and legs
- Lack of energy/exhaustion
- Lack of interest in daily activities
- Taking extra effort to accomplish everyday tasks
- Difficulty concentrating
- Overwhelmed by feeling fatigued
- Inadequate sleep
It is not documented what causes fatigue, but it is likely related to the symptoms of MSA.
- Regulation of temperature (being too hot or too cold)
- Visual problems (blurry or double vision)
- Sleep disturbances (REM sleep, sleep apnea) – Consult with your doctor about treatment for any sleep issues
- Physical energy it takes to complete daily tasks
- Orthostatic hypotension – consult with your doctor regarding treatment
- Medications you are currently on – monitor the medications you are taking, especially new medications that have been prescribed)
- Being less active due to physical limitations – consult with your health care team about helpful and safe exercises
A sudden onset of fatigue could indicate an infection (UTI or lung) or something unrelated to MSA. This should be discussed with your doctor immediately.
WAYS TO MANAGE FATIGUE
- Drink plenty of water to stay hydrated
- Use a wheelchair to conserve energy and allow yourself to participate in a planned outing
- Monitor how you are feeling and plan your day accordingly
- Allow for quiet days during the week
- On a good day, it’s easy to over do it. Pace yourself and allow for periods of relaxation.
- When planning an outing or activity, allow plenty of time for rest before and to recover afterwards
- Asking for help from family and friends can be difficult to do, but they are happy to help
YOU ARE YOUR BEST ADVOCATE. KNOW YOUR LIMITATIONS!
By Joanne Tubbs Kelly
Decades before my husband, Alan, was diagnosed with Multiple System Atrophy, he told anyone who would listen that we treat our pets better than we treat our elders because we help them die when their suffering becomes too much to bear.
In 2016, we both voted for Colorado’s End-of-Life Options Act and were delighted when it passed. The act allows mentally-capable people whose death is inevitable within six months to receive a prescription for a life-ending drug. But here’s the rub: the person must be able to ingest the drug on his or her own, either by drinking the cocktail directly or by pouring it by themselves into their feeding tube. That can be difficult for someone in the end stages of MSA, but it didn’t stymie Alan.
Always ready to laugh or make a joke, Alan was an amazingly good sport through all of the indignities MSA delivered – the incontinence that forced him to catheterize himself each time he needed to empty his bladder, and later to be permanently catheterized, the orthostatic hypotension that left him lightheaded and dizzy, the problems with balance that ultimately confined him to a wheelchair, the REM sleep behavior disorder that forced us to sleep in separate rooms. He took it all in stride, except for two things – he hated not being able to take care of his own body, his own needs. And most of all he hated that his illness made him sound like he was falling-down drunk when he tried to talk. Many people had trouble understanding him. It became increasingly difficult for Alan to ask someone a simple question about their grandchildren or to tell a silly joke. It took away the thing that gave Alan the most joy in life.
Early in Alan’s illness, our Google research led us to suspect he had MSA. But the doctors wanted to eliminate all the other illnesses that look similar, so they didn’t give him an official MSA diagnosis until August of 2017, and from there, Alan’s downhill path was steep and his descent was swift. Alan asked me to make an appointment with our healthcare organization’s palliative care team in January 2019 so he could make sure he understood the rules for using the End-of-Life Options Act. He wanted to be prepared when the time came. Our conversation with the team led me to believe Alan probably wouldn’t be able to qualify to use the act for two reasons: he would have to prove he had decisional capacity (the ability to make good decisions on his own behalf), and he was already showing signs of problems with executive functioning; and his shakiness would make it hard for him to ingest the medication without help.
In August of 2019, Alan’s doctor referred him to hospice, which was open only to people who are likely to die within six months. So, Alan met the first criteria for using medical aid in dying. Because I could no longer take care of Alan safely at home, we were in the process of moving him into a nursing home. As soon as he moved in, all the nurses and aides fell in love with Alan. At the end of the first week in October, his first week at the nursing home, he had his first appointment to be officially evaluated by the palliative care team. They asked questions to evaluate his mental competence and asked him to demonstrate that he could drink a half cup of liquid without help. Alan was having a good day, and he breezed through the evaluation. I filled out the paperwork for him and made the other required appointments, and by the end of October, Alan got his answer – he was approved for medical aid in dying. Alan was relieved, knowing that he had the option of ending his life if he decided he couldn’t go on.
In early December, Alan told me he was “out of juice” and ready to call it quits. I convinced him to wait until after the holidays so his daughters, granddaughters and I would not be mourning him every year at Christmas. Alan agreed to wait until January, and we picked a date that would work for all the people he wanted in attendance. Alan wanted to go home to die in his own bed, surrounded by people who loved him. So, I did the most loving thing I could think of; I arranged it for him, just the way he wanted it. He died a tender, gentle death on his own terms.
She Writes Press will publish my memoir, Walking Him Home: Helping My Husband Die with Dignity, on August 9, 2022. If you have MSA or are a care partner of someone with MSA, you will relate to the struggles and challenges in this memoir, the small triumphs and joys. And most of all, the love.
Death with Dignity is only available in a select few U.S. states, and The MSA Coalition seeks to share experiences like this with the MSA community to provide options. We encourage our community members to discuss all options with a healthcare team, family, and close friends before making a decision. Find more resources on medical aid in dying here.
By Leon G. Kotze
I am Leon G. Kotze, born in Usakos, Namibia, in February 1968. We are a family of three brothers and one sister, with all, even my parents, still being alive.
I began playing keyboard (organ back then) at the age of seven. I went to school in Karibib, and finished grade 12 in 1986. I then did my two years of national defence duty in the South African defence force, and started working right after that.
I met my soulmate during a church house visit in May 1988, and we were married on January 5, 1991. Our boy was born 15 years later, after two miscarriages and a lot of prayers.
In January 2017 my wife started realizing my left hand got colder and my left foot start dragging. Around March/April 2017 my left hand started with tremors, and I joked about it.
Then, in May, my boss at Okonjima Lodge asked if I should go see a doctor, and Dr. Zatjirua diagnosed Parkinson’s on May 31, 2017 (this was a death sentence at that stage). After a week on medication, with heavy side effects, I stopped using the meds I was prescribed and tried several others, with no positive effects.
In May 2018, we moved back to Windhoek, and I ended up in a deep depression during where I lost 13 kgs in three weeks. By my God’s grace, I got back up through my wife, boy, Dr. Willem Moore, friends, and family’s help. I started working and was blessed to keep improving my musical talent, but in March 2020, COVID hit, and our employer closed its doors.
In June 2020 I started distributing my music online, with good results from the start, and in December, I got fixed employment with Omega Security in Windhoek.
In January 2021, my right hand also developed tremors. In May, we went to Cape Town to see Dr. Vlok regarding the DBS operation. However, he discovered it was not Parkinson’s but MSA because I didn’t react well to the medications for Parkinson’s.
The symptoms of MSA got increasingly worse, with my hand tremors and left foot dragging becoming a thorn in my side, but I was blessed to maintain a positive perspective and kept searching for ways to have a positive contribution in my everyday life.
My symptoms increased with my bladder getting difficult to control, swallowing difficulties, and choking regularly. I had difficulty getting up from a chair with sporadic dizziness and low blood pressure. I started snoring and drooling with sleep apnea reported by my wife, and since August 2021, my left foot also started swelling.
In September 2021, my wife encouraged me to start drawing pictures, which developed quickly into another talent. In December 2021, I was declared medically unfit to work, and since then, I have focused instead on my talents. But with a quickly tiring body, I sleep regularly to recharge body and soul.
As far as I know, this illness is very scarce in Namibia, and therefore I have six doctors that assist me, and we all learn a lot about ways to deal with it, so that I can keep up with my music, painting oil paintings, and burning images on leather and wood.
This way I can serve my God as well as make a positive contribution to my country and the world, and MSA is only a thought way back in my mind.