Support Hotline: (866) 737-5999 info@multiplesystematrophy.org
Acceptance and MSA

Acceptance and MSA

By Tom Tait

Multiple System Atrophy ended our love story, but not our love for each other. My wife Liz was diagnosed with possible MSA at age 57 on November 26, 2013, at the University of Pennsylvania’s Parkinson’s Disease and Movement Disorder Center in Philadelphia. Five years later, she passed at 62 on December 20, 2018. She donated her brain for research, and I received the autopsy report confirming the diagnosis of MSA-C. Happily married to your high school sweetheart for 40 years, you honestly don’t want to accept the diagnosis of a terminal brain disease.

I have attended, facilitated, and co-facilitated over 150+ support group webinars for Carepartners of People with Terminal Brain Diseases, including MSA, CBD, and PSP. I have heard in so many words, “I cannot accept that my husband, wife, friend, lover, brother, sister, mother, father, you name it, has a terminal brain disease.” Yes, the operative word is “accept.” So, we mentally struggle with keeping it together and trying to find a cure. However, right now, at best, we can make the MSA journey as comfortable as possible for our loved ones as long as we can accept each stage along the way. Come to find out, there are a series of emotions that lead to acceptance. The five stages of the grief model by Swiss American psychiatrist Kubler Ross are denial, anger, bargaining, depression, and acceptance.

It is interesting that we start talking about grief when have not lost our loved one yet. However, as I learned from a social worker, we start grieving as soon as we hear the word terminal disease.

People often think that the stages of grief last weeks or months. We forget that the stages of grief are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each stage in a linear fashion. We may feel one, then another, and back again to the first one. Keep this in mind as I cover the five stages of grief on the way to acceptance.

  1. Denial: I did not know how grief worked, but Liz and I discovered there are stages. When confronted with a terminal disease, you go into denial, one of the first stages of grief. Before learning about a terminal illness, I thought grief was when you lost someone. In this case, they are still here, but you start grieving as soon as you learn the MSA journey ends in death. Initially, you are shocked, which helps us cope and make survival possible.
  2. Anger: Once you learn what will happen along the MSA journey, you become angry. Angry at the world, your religion, and that it’s happening to us. Angry that your future together is being denied. Angry that your children’s mother is going to die. Angry that everything that you were or are is changing. Angry that something beyond your control is taking control of your plans together. Anger is just another indication of the intensity of your love.
  3. Bargaining: The third stage involves the hope that the individual can avoid a cause of grief. Perhaps people facing less severe trauma can bargain or seek compromise. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. Examples include the terminally ill person who “negotiates with God” to attend a daughter’s wedding, an attempt to bargain for more time to live in exchange for a reformed lifestyle, or a phrase such as “If I could trade their life for mine.”
  4. Depression: “I’m so sad; why bother with anything?”; “I’m going to die soon, so what’s the point?”; “I miss my loved one; why go on?” During the fourth stage, the individual despairs at recognizing their mortality. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
  5. Acceptance: Acceptance is often confused with being “all right” or “OK” with what has happened. This statement is not the case. Most people do not ever feel okay or all right about the fact of going to lose a loved one. This stage is about accepting the reality that our loved one will slowly lose their ability to talk and walk. The eventuality is death—recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually, we can choose to accept it. We can learn to live with it. In resisting this new norm, many people first want to maintain life as it was before. In time, through bits and pieces of acceptance, we see that we cannot hold on to the past. It has been forever changed, and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves.

It does not become easier when we accept the challenges that MSA will present. Still, it does allow us to live fully, understanding that we have no control over where this is leading. By embracing acceptance, we can make decisions that will make the best of the remainder of our lives.

While it may sound strange, MSA allows us time to say goodbye to our loved ones.

I wish you all serenity… Tom

Connection Gives Encouragement

Connection Gives Encouragement

By Cathy Chapman, MSA Coalition Patient Representative

After the close of the 2022 Patient/Family Conference we come away with knowledge, support, connection with others, encouragement, and finding peace in knowing that we are not alone on this journey. Even as we were not able to gather as a community in person this year, the virtual conference was a successful was a wonderful way to still connect and learn from one another even from afar.

After attending the MSA-Coalition’s annual conference for several years, I always feel like I get plenty of support and gain knowledge each year. The professionals that are there to give presentations and advice are extremely knowledgeable, and I feel that they have given me in turn, the knowledge I need to navigate through this disease.

I always say that knowledge gives you power. It gives you the power to confront MSA head-on, and it gives you a feeling that you do have some control over what happens to you. Going to the conference gives you that power, and the strength to carry on, because you see that you are not alone and there are other people that you can lean on.

As this year’s conference comes to a close, it is helpful to know that the MSA-Coalition has many resources that can be accessed throughout the year online. These resources are valuable for patients, caregivers, and anyone else who wants to learn more about MSA itself or caring for MSA patients.

The 2022 Patient/Family Conference sessions will soon be available on the Coalition website so that even if you were unable to attend the sessions during the conference, you can still access the information that was shared. Stay tuned to our website for when these sessions are posted.
One of the biggest benefits I have found from the conference is the opportunities to network and connect with others who have MSA or are caring for someone with MSA. It’s a great comfort to know that there are many others going through the same struggles that you are. I always find that it is very easy to talk to people at the conference because everyone there is so compassionate – care partners, other patients, and professionals; everyone understands what you are going through, and it is helpful to connect with others in similar situations.

Beyond the conference, the MSA-Coalition has multiple support groups on Facebook. These are wonderful ways to connect with others on similar journeys throughout the rest of the year.
I hope that you find the conference recordings, virtual support groups, and other resources that the MSA-Coalition offers to bring you encouragement, knowledge, and support. The most relevant resources are linked below.

ENCOURAGEMENT IS THE FUEL ON WHICH HOPE RUNS – Unknown

STAY CONNECTED:

MSA COALITION WEBSITE

https://www.multiplesystematrophy.org/about-msa/

FACEBOOK

(PATIENT JOURNEY, BUDDIES & CARE PARTNERS, MSA COALITION,)

https://www.facebook.com/groups/MSAPatients

https://www.facebook.com/groups/MSABuddies

https://www.facebook.com/MultipleSystemAtrophyCoalition

Support Resources

http://www.multiplesystematrophy.org/wp-content/uploads/2022/04/MSAC-support-contact-list-2022-03-06.pdf

http://www.multiplesystematrophy.org/wp-content/uploads/2022/04/MSAC-support-contact-list-2022-03-06.pdf

Acceptance and MSA

In Memory of My Father, Kenneth Robert Treat

By Robert Treat

I lost my dad, Kenneth Treat in 2009 after a diagnosis of Multiple System Atrophy, although since he died, I’ve often wondered if there wasn’t some Lewy body involvement.

My father was born on September 7, 1930. He was an Episcopal priest from 1955 to 1996. The circumstances of his passing were horrific. After returning from a vacation celebrating their 50th wedding anniversary, Dad started getting increasingly dizzy, and they thought he had benign positional vertigo.
In March 2009 they changed the diagnosis to Parkinson’s Disease, but he continued to suffer falls. They took him to a hospital where he got a Multiple System Atrophy diagnosis, and he was shuttled back and forth between the nursing home and the hospital until he went into septic shock. He died on May 3, 2009.

I’d like to share a few photos of my dad; one of him starting a job at St. Albans in 1974; of him with his grandson Bill in 1984, of him as a rector in clericals in the mid 1990s and; and a family photo taken for my parents’ 50th anniversary in September 2005.

Connection Gives Encouragement

Knowledge is Power: Expand Your Knowledge at the 2022 MSA Patient and Family Conference

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.

Congress Introduces the National Plan to End Parkinson’s Act

Congress Introduces the National Plan to End Parkinson’s Act

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.

What’s Next?

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 joe.lindahl@msacoalition.org.