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The Not So Little Things

The Not So Little Things

By Jimmy Burt and Kathleen Romania

Can you feel joy and sadness at the same time? It seems like, nowadays, every Christmas season I experience this duality of emotions. I think my wife and her family do too. And I’d imagine George, my father-in-law, does especially.

It’s been almost nine years since he started exhibiting signs of MSA, and about seven since he was officially diagnosed. Over that time, he’s experienced what most MSA patients experience: a rather rapid loss of control over his movements, intensifying speech difficulties, and periods of melancholy. Yet, throughout it all, George has never lost his will to live.

And even though Christmas time looks different for him now than it did in the past—he always seems happiest around this time of year. His smile’s a little bigger. The glint in his eye is a bit brighter. And I think part of it is because the holidays—and Christmas in particular—have taken on new meaning for him. I know they have for me, my wife, and her family.

But I also think it’s because George is one step ahead of us all when it comes to knowing what’s truly important in life: family, friends, and joy. And no time of year brings the three of those things together quite like Christmas.

There’s just something…different about it.

George has always loved being around his kids. But it’s different during Christmas. It means more, particularly now. He’s always loved spoiling his wife with gifts. But it’s about more than that now—gift-giving is something he can still dictate and control (he provides explicit directions to my wife, who then plays the role of his elf).

He’s always loved his wife’s meals (especially the sweets). But it all tastes better now. He’s always loved the decorations around the house. But they’re more exciting to look at now. And he’s always loved poking a little fun at his son-in-law. But he laughs harder at it now.

I don’t think this is because George sees every Christmas as his last one. I think it’s because George feels blessed to just be there with us, celebrating, sharing, and making memories. And I know we all feel blessed to be there with him, too.

I guess what I’m getting at is, when so much has been taken away from you—like it has been from George—you realize the little things aren’t so little.

It’s not just a Christmas tree.
It’s not just a gingerbread cookie.
And It’s a Wonderful Life isn’t just a movie.

It’s everything.
And George knows this better than most.
This Christmas, I hope you and your families can find joy in the little things.
Because they’re not so little after all.

The Not So Little Things

You Can Go Home Again — with Preparation

By Alan J. Smally
MSA Coalition Board of Directors Patient Representative

Thomas Wolfe wrote “You Can’t Go Home Again,” but I thought maybe I could for Christmas. Although I was born up north, I had my first birthday in Sarasota, Florida, and lived there all through school. I have always considered Sarasota to be my home.

I was diagnosed with Parkinson’s disease in 2015 and my diagnosis was changed to MSA in 2017. Initially, I was doing well. We traveled around the US in our RV twice a year for six years, always stopping in Sarasota. My wife navigated and I drove. I then had minimal symptoms and couldn’t conceive of not being able to travel whenever and wherever we wished.

But by December of 2021, my situation was dramatically different. We had sold our RV, independent ambulation was becoming difficult, my wife did the driving, and daily activities were difficult. My neurogenic bladder required intermittent catheterization during daytime hours. My wife placed a Foley catheter connected to a drainage bag each night. Having the Foley in place, allowed me to avoid getting up several times nightly and the attendant risk of a fall. My neurogenic orthostatic hypotension put me at risk for passing out.

Tip: We rely on a portable, cordless, cuff [ours is made by Omron] to monitor my pressure. When it is low, I take a water bolus and modify my activity. We brought the cuff along. It fits easily in our backpack.

My brother, his wife, my nephew, and high school friends still live in Sarasota or nearby. My brother and Sarasota friends and I have played poker once or twice a year for over 50 years. A game was planned during my visit. We made reservations on a nonstop flight. Cathing supplies and a bedrail were shipped to my brother’s house.

Tip: Shipping larger items is more reliable than checking them with luggage.

My meds with several extra days’ supply were carried on in our backpack. I wore a leg urine collection bag so we wouldn’t be searching for a place to catheterize enroute.

Tips: Take nonstop flights if at all possible. Carry on all meds and any equipment you could possibly need. Assume things won’t go as planned. Bring your own wheelchair/walker and check wheelchair at the boarding gate.

We had a wonderful trip. Unfortunately, I lost at poker! However, the camaraderie of the poker tradition was well worth it. You can go home again—but when you have MSA plenty of advanced preparation is advised.

Navigating Emergency Room Visits and Hospital Stays

Navigating Emergency Room Visits and Hospital Stays

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-

Navigating Emergency Room Visits and Hospital Stays

Christmas and MSA

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

Navigating Emergency Room Visits and Hospital Stays

Saying Yes to Opportunities

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.

The Loving Sacrifice of Caregiving

The Loving Sacrifice of Caregiving

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.