By: Kim Watanabe
Hello, my name is Kim Watanabe and I am a 62 year old woman living in Indianapolis, IN. I was diagnosed with probable MSA-C in June of 2022 after a long diagnostic process that ultimately took me to Vanderbilt Medical Center seeing Dr. Classen and Dr. Eaton, where I was enrolled in a study involving alpha synuclein skin biopsies which were then correlated with signs and symptoms. I started having symptoms as far back as 2017 that escalated in 2020 – difficulty walking distances, shortness of breath, left hand weakness, blood pressure spikes, gastroparesis, urinary hesitation, fatigue, speech and swallowing difficulties and in this last year, ataxia.
I have had Systemic Lupus/Sjogren’s Syndrome for 30 years, and I developed chronic pancreatitis about 4 years ago causing me to get a GJ feeding tube that I use intermittently. As you can see, physical challenges have been part of my life for many years. I have always sought to deal with them as proactively and creatively as possible. MSA-C has definitely been a greater challenge for me in many ways due to its varied symptoms, unpredictable timelines, limited treatment options, lack of information, and the fact that it is a terminal illness – eek! It has taken me some time to get my head around having this disease and identifying where I have some control and power to influence my journey with it.
I am a physical therapist, a visual artist, a fledgling poet, and a meditator and very grateful for that. For me sharing knowledge, creating art and reading/listening to books/writing, and daily meditating has been helpful as I learn to cope with the many facets of having MSA and experiencing all of the life changes that are coming with it.
At this point in time I ‘toddle’ around the house without any assistive device. I use a cane or rollator when I am out and about, and a scooter/wheelchair if there is lengthy walking or standing involved, or if I am trying to preserve my energy for other activities. I am still able to drive short distances, I attend a weekly art class and often spend weekends doing creative projects. I live with my partner of 10 years. I have an awesome adult daughter in Austin, TX as well as some loving and wise friends for support. I have a lot of muscle and diaphragmatic/breathing pain so I work with palliative care for support and pain medications. I am unable to lay down without a BiPap machine set to ventilator settings due to weakness of my respiratory muscles. I struggle with fatigue and plop on the couch around 6 PM most evenings as I am out of steam and go to bed often by 9-10 PM. I realize I am relatively early in this disease process and that many of you have greater physical challenges. I am traveling with you.
I want to share some information with my MSA community from my 40+ years working as a physical therapist. These are the first 5 things about PT that I want to be sure you are aware of.
- Start physical therapy early when you begin losing strength, balance etc. At times even 4-6 sessions with a home program can be beneficial to help you improve or maintain your function or make plans to deal with the losses you are dealing with. You can return periodically as your symptoms progress or if you have another illness.
- Assistive devices are not always about holding you up or balance. Using a cane, rollator or scooter/wheelchair can help you save energy as well so you have energy left over for things you might enjoy or need to do. PTs can help choose, fit, and teach you how best to use your devices. Waiting to fall or falling frequently is not the best way to determine that it is time for a balance aid.
- All physical therapy is not the same. I have personally found that seeking out a PT in a neuroscience center offered more appropriate interventions. If you are not close to a neuro center, then ask to be scheduled with a PT that works with neurologic issues. Some hospitals and private practices do not have a neuro PT, so you may have to check around. It is important to see the best person possible to maximize your time and effort. Overdoing strength training, excessive reps or too high of a level of exercise can cause so much fatigue that PT is not helpful at all, so it is important to get a trained practitioner and speak up if you are getting excessively fatigued during or after sessions.
- Don’t wait for your doctor to suggest PT. Ask them for a referral, or if you are in a location with direct access/no referral is needed, then make an appointment. Doctors do not always think to order PT or they may not understand its potential value for you.
- PTs can help you problem-solve how to do transfers: bed to wheelchair, wheelchair to toilet, and getting into a vehicle efficiently and safely. They can also show caregivers how to do things in a way that protects their spine and avoids injury and excessive fatigue.
I have benefitted from doing physical therapy, and I plan to return for additional sessions soon as I am noticing more difficulty with strength and balance. I have gone through strength, balance, and vestibular retraining as well as pelvic floor PT that has helped urinary issues.
As I close I would like to share a favorite poem that inspires me to see the world differently, appreciate slowing down, and amidst the many losses of mobility, find a new way of embracing my time here.
I am hoping to write more in the future about various types of PT and alternative body therapies that I believe are good for us as MSA patients to have in our toolbox. For now, I wish you ease and many moments where the good in life can shine past the difficulty of this disease.
Where Does The Temple Begin, Where Does It End?
By Mary Oliver
There are things you can’t reach.
but you can reach out to them, and all day long.
The wind, the bird flying away. The idea of God.
And it can keep you as busy as anything else, and happier.
The snake slides away: the fish jumps, like a little lily, out of the water and back in: the goldfinches sing from the unreachable top of the tree.
I look; morning to night I am never done with looking.
Looking I mean not just standing around, but standing around
as though with your arms open.
And thinking: maybe something will come, some
shining coil of wind, or a few leaves from any old tree-
they are all in this too.
And now I will tell you the truth.
Everything in the world comes.
At least, closer.
Like the nibbling, tinsel-eyed fish; the unlooping snake.
Like goldfinches, little dolls of gold
fluttering around in the corner of the sky
of God, the blue air.