by MSA Coalition Comms | Nov 7, 2023 | MSA-Blog
By Cathy Chapman
During the course of my journey with MSA, (I was diagnosed in 2012), going to the Emergency Room and having to stay overnight in the hospital was something I have had to experience multiple times. I want to share some tips that have been very helpful to me in navigating a positive outcome when you need to go to the hospital and have to deal with doctors and nurses who are unfamiliar with you and your case, and possibly MSA in general.
Give the doctors a printed out copy of “What Is MSA” https://www.multiplesystematrophy.org/wp-content/uploads/2023/04/MSA_2023_Trifold-WhatIsMSA_ENG.pdf Not all doctors are familiar with many of the specifics of MSA, so if they are not, this will help them to familiarize themselves with the disease and provide you with better care.- Give the doctors a list of medications, supplements and if you are participating in a clinical trial, the information for the trial.
- Let the doctor know what your current MSA symptoms are.
- Provide them with the names and phone numbers of your neurologist and all of the other doctors on your care team. The ER doctors have in the past contacted my neurologist and with the most recent visit, my pulmonologist for consult. This was very helpful for them to know the best way to proceed with treatment.
Another good resource for when you go into the hospital is this guide from the MSA Trust. While they are a UK-based organization, the document still provides helpful information that may pertain to you, even if you are in another country.
I leave you with a quote:
Hope is like a road in the country;
There was never a road, but when
many people walk on it,
the road comes into existence.
-Lin Yulang-
by MSA Coalition Comms | Nov 7, 2023 | MSA-Blog
By Tom Tait
Is this the last Christmas?
How do you get through Christmas with your loved one who was just diagnosed with possible MSA. The question always on your mind is, “Will this be the last one?” That question will come and go along the MSA journey during many events. I understand it is normal, and I don’t let it overwhelm my thoughts.
MSA changes our lives forever, our days, our holidays, and our time together. It has taught me to look at all life events as very special. With a strong, loving family, it’s “show time” to show them how strong you are, show them your best smile, and let them know that you got this!
2014 Christmas: We celebrated like we always did, my wife decorated the house, and I put up the lights and trees right after Thanksgiving. She shopped and wrapped gifts. All is well at the Tait house! Santa comes into our home to visit on Christmas Eve, and we all enjoy it. All our kids and grandkids visit on Christmas day, and Liz serves a great dinner. All things considered, it’s Christmas as usual.
2015 Christmas: Pretty much the same as the first; however, Liz tires quickly and tries her best to stay awake. She cannot stand up as long as before, so we make the best of it. I take over some of the Christmas decorations, and she lets me know where they go and how she wants all the ornaments and figurines. The kids stop by and help with the decorations and setting up the trees, one in the sunroom and one in the living room. I shop and help with cooking Christmas dinner. All our kids and grandkids visit on Christmas day, and we have dinner. It’s different, but we approached MSA as a team, so we both got this! Is this the last one?
2016 Christmas: Liz is starting to slow down and is wheelchair-bound. The hospital bed is set up in the living room. During this time, the children stop by and help with the decorations while I shop, wrap the gifts, and make all meals. On Christmas, all our children and grandchildren come for dinner. We enjoy every moment as this could be the last one.
2017 Christmas: Liz is bedridden, and Hospice has entered our world this past year. The children help with decorations and celebrate, as we will not let MSA take our Christmas joy away. We know it’s different this year as we all eat in the living room while Liz lays in bed. Is this the last one? Yes….
2018 Christmas: We celebrated without Liz this time, as she passed away five days before Christmas on December 20th. We all knew that she would want us to celebrate Christmas, so we had Christmas dinner, opened gifts, and missed her dearly.
Christmas Without You
How very much you’re missed
I think you somehow know.
For I feel you beside me
No matter where I go.
To be reminded of you
I don’t have to go that far,
For every night I see your face
In every shining star.
As every moment passes by
Now that Christmas time is here,
I’ll be thinking of the joy we shared
At this special time of year.
.. Author Unknown
Our MSA journeys are different; we live on and celebrate life, acknowledging the lesson from MSA to make every day and all events special. No regrets…
Wishing you serenity,
Tom
by MSA Coalition Comms | Oct 3, 2023 | MSA-Blog
By Christine Kozikas
My story started in 2015 when I fell at the counter of the news agency I worked in, and a co-worker humiliated me by sharing security camera footage with every sales rep that came into the store. Little did I or they know that what appeared to be an embarrassing mishap was actually the first sign of something more sinister.
By December of that year, I noticed that I couldn’t pick up the coins from the register and my handwriting had deteriorated so much that I knew I needed to investigate further. I was sent to a neurologist where I was assessed doing different exercises and as a result, I was diagnosed with Parkinson’s Disease. In the moment I thought that was the worst day of my life.
In 2021, I was given some hope with the potential for a deep brain stimulation procedure but after further testing, I received a phone call telling me that I had been originally misdiagnosed and instead had MSA. I then realized that this day instead was the worst day of my life. I have been battling MSA since this time and continue to deteriorate with my body constantly letting me down, but I am determined to not give up.
I now rely on my wheelchair and other support full-time and while initially hard, I have learnt to adapt and accept help along the way. I have built a fantastic support system of people who have added value to my life and help me to make the most of what I can still do. With their support I have continued to travel locally and interstate to maintain connections with my friends and family.
I have a new appreciation for disability access and seek out accessible ways to still participate in the community and socialize. I have also made valuable connections and friendships within the MSA online community. This led to me recently participating in a US webcast, which was by no means an easy feat given my difficult speaking. My advice to others is to say “yes” to any opportunities to connect with others or get out and about and find adaptive ways to participate. I know that the road ahead will be hard, but I am determined to keep finding ways to live my life to its full potential and I encourage others to find sources of joy despite the hardships.
by MSA Coalition Comms | Oct 3, 2023 | MSA-Blog
By Deborah Park
Hello, my name is Deborah and I’m a 25-year-old daughter whose mother lost her fight to Multiple System Atrophy on September 11, 2021. My story of caregiving began in 2018 when my mom was diagnosed with MSA-C. As a sophomore in college, I was completely lost and disoriented by the devastating news of a very rare disease. I remember feeling so confused because I had never heard of it.
Reflecting back on a few years prior to the diagnosis, my mom was gradually displaying unique symptoms, such as excessive random laughter, difficulty with balance/coordination. Upon beginning my research on MSA, I grew grateful for the early diagnosis because many patients don’t receive a set diagnosis for years, mistaking symptoms for Parkinson’s Disease. I began to slowly find resources like MSA Coalition and support groups with fellow caregivers online as I began to navigate this care journey. I grew a passion for advocacy, connection with other MSA patients/caregivers, and wanted to spread awareness.
During the last 2 years of college, I was a part-time caregiver for my mom, going home only on the weekends from school. This inconsistency intensified my guilt; however, I learned early on that caregiving for a loved one requires a TEAM. I was so thankful for my dad and brother who took the reins of the load in these years. I understand that sometimes you’re the only full-time caregiver for your loved one. Even then, a team is crucial to help your loved one. I have come to find later in my journey that there are so many resources and services available for you, so that you do not need to bear the burden alone. After completing my bachelor’s, I then decided to become my mom’s full-time caregiver along with my dad and brother. This was not an easy decision at all knowing that my life would be somewhat on pause, that I would experience the progression of MSA up close, and that some days of caring for my mom would be grueling.
Her condition was gradual for the first two years until it progressed very rapidly during the pandemic. By the end of 2020, she needed around the clock care for day-to-day activities that we often take for granted: bathing, feeding, toileting, shifting positions, and dressing. Her health declined so much more quickly than I had anticipated.
In the 1 year of intense full-time caregiving, I have deeply loved and been deeply loved by my mom. It was one of the hardest things to do as I watched her body deteriorate, but I would never replace that season for anything else. Caregiving is truly a loving sacrifice, where you grow to love someone with your all. I want to encourage the MSA Community to fight for your loved ones, care with compassion & patience, and never ever lose hope. Though caring for a loved one with MSA is one of the most physically, mentally, spiritually, emotionally taxing things, I would say yes again in a blink of an eye if it meant I could see my mom again.
The future may be uncertain but embrace each waking moment you have with your loved one. You are not alone. Your beautiful life will be forever remembered. I will continue to honor you in everything I do; I want to continue to raise awareness on MSA, share about your life, and long for the day I can see you again. I miss you so much & love you always, Mom.
by MSA Coalition Comms | Sep 12, 2023 | MSA-Blog
By Wendy McCullough
April 27th, 2023 marked 25 years since my husband, Jason, and I said, “I do.” We vowed to love and care for each other through all of life’s changes, and yet, when you are in your mid-twenties, you do not know exactly what that will mean.
Life’s changes for us meant specifically, moving from military service in Hawaii (where we met, fell in love and married) to Jason’s work as a government contractor with Space Missile Defense Command in Huntsville, Alabama, to subsequent factory jobs back home in Indiana near his family, to complete disability for Jason in 2019. I was a homemaker through Jason’s working career after our service in the Navy ended, until his disability coaxed me back into the work force after nearly two decades.
Life’s changes also included two strong and handsome sons, Alex and Matthew, who would grow up to become Jason’s caregiver assistants while I learned how to give full-time care. They face each day with courage and humor and are our household comic relief. Life’s changes included my learning how to navigate a complex health care system that I had at one time avoided at all costs. I was the crunchy mom who always preferred natural remedies to professional medical treatment, using hospitals and western medicine as a last resort. God must have a sense of humor; the irony of our situation is not completely lost on me! I am now the proud owner of a medical binder, complete with a detailed medication chart for Jason’s many meds and supplements. I learned how to advocate for my husband with his complex medical challenges at a young age while dealing with the frustrations of misdiagnosis. Although we noticed medical changes a few years prior, we began seeking a neurologic diagnosis in 2018. Jason was finally diagnosed with Multiple System Atrophy with Cerebellar Ataxia on March 7, 2022, just one day before his 48th birthday. The diagnosis was a relief to us all.
We have learned to navigate life’s changes due to MSA-C by our faith in God, support from our physical and psychological families, an amazing hospice staff and neurologist, and by making the most of every opportunity and not taking any day for granted. We took a seven-day western Caribbean cruise in May of 2019. I have included a snapshot of Jason and our two sons, Alex and Matthew that I captured just at sunset. At the time of the cruise, I was aware that we were dealing with some neurological changes but not yet exactly what they were. I was also not aware at the time that life globally was going to look completely different one year later, and cruises were going to be forbidden.
MSA has taught our family to love deeply, forgive quickly, and hope for the future. But mainly, to appreciate the little moments of today and stay in the present, because that is all that is promised to us. Even when life changes, life can be beautiful, if we can learn to live it with no regrets.
by MSA Coalition Comms | Sep 12, 2023 | MSA-Blog
By Teresa Baker
I write a great deal of poetry in order to express feelings, ideas, and opinions which come from someplace deep inside which cannot be easily explained; but I also think and express myself using abstract ideas which come through better using poetry.
I have heard many people with the various diagnoses of Parkinsonism talk about their painful feelings of abandonment when friends walk away after hearing and seeing what happens when someone has developed one of these diseases, and even worse, when some or all family members walk away, or refuse to accept the seriousness of the disease. An example would be one of my grandchildren who has decided if I can laugh then it means everything is going to be fine; yet she will have nothing to do with me.
In writing this poem, I am attempting to tell family and friends that having such a disease as MSA is painful enough, but when loved ones turn away the pain is much worse. No one likes feeling abandoned, but under these circumstances, support is so very important. So many people express this pain, but it seems to go nowhere. I am hoping someone benefits from loved ones hearing and responding to the sound of a voice crying out, “please don’t turn away, I need you.” I use a lot of humor to encourage others, but I experience the same pain as everyone else because members of my family also have turned away.
You Walk Away?
Forget your own embarrassment,
your lack of understanding;
never mind your own discomfort
and how it makes you feel;
think how little you can possibly know,
even if you’ve read the facts,
you cannot how real this beast.
Look into their frightened eyes
as they try to regain control
of a body no longer cooperative;
of a body moving without purpose
no matter how hard they try.
Have you no compassion
for a person once your friend,
someone from your family?
Must you walk away from this
as if you were the very victim
suffering what you don’t want to see
while someone needing comfort and love
is left alone without your company
at a time when growing in their need
for one who once declared them as a friend?
Will you leave them lost and on their own
rather than try to help them through
the raging crisis of a brain
raining down an agony
which is frightening to you,
who cannot fathom how deep the depths of terror
MSA puts a person through?
The shame this brings to someone
is falling not upon the other;
it’s falling now on you.
