By: Belinda Franklin
There are three typical stages of Multiple System Atrophy (MSA) – Premotor (sexual and urinary dysfunction, sleep disorder, orthostatic hypotension), Possible (Parkinsonian, cerebellar features), and Probable (multidomain autonomic failure, pyramidal signs), but in my case, things were different. First, I had Frontal Executive Dysfunction which led to being misdiagnosed with Early-Onset Frontotemporal Dementia in December 2012. Secondly, recurrent falls and cerebellar issues (such as failing vision in only one eye) were early. Lastly, my case of MSA is not as linear as is typical.
I have been through these mobility stages many times. I have severe autonomic dysfunction which was as depicted right on time in year two. My infections from dysautonomia averaged more than five hospitalizations per year over the next five years.
Each time I was hospitalized for these infections, I lost more mobility. Physical therapy helped me in the early years to regain my strength within a few months of these hospitalizations, but it took a long time before I could go home. I had to go to an in-patient Skilled Nursing Facility (SNF) to receive three-hour PT and OT six days per week.
I could be temporarily released to my husband on Sundays for no more than three hours. This course of 1:1 rehab took nine weeks just to regain enough strength to meet the goal of being able to safely transfer to a wheelchair for a discharge to home. Then I had another six months of combined in-home and outpatient physical therapy before I felt comfortable using my walker short distances within my home. Finally, I used my manual wheelchair permanently to get from the bed to the toilet to the sink. After three dangerous falls out of the wheelchair onto the bathroom tile, I am not allowed out of bed without assistance anymore.
In late year six, an emergency tracheostomy was required due to a paralyzed diaphragm, low lung function and vocal cords that closed automatically upon exhalation, resulting in an impaired airway.
I have seen nine neuro-specialists repeatedly over the years and in each specialty, we reached a point where the targeted therapy was only working for my symptom relief. There was really nothing more to be done. I now only venture to a clinical setting to see the pulmonologist who performs my trach changes every few months and cultures the growth of a nasty bacterial infection I contracted in-hospital post-tracheostomy.
In-home hospice has been a blessing. I have an aide five days each week. The daytime RN comes twice weekly or daily depending on whether I have an active infection or other injury. Hospice treats infections with antibiotics over a longer course of time. They bring any required equipment such as X-Ray machines to me.
Although I am now bedridden and cannot speak, I am relieved to know I will never see the inside of a hospital room again I wanted to be clear that if you see the typical MSA stages of what will be happening and when, it may not apply to YOUR case of Multiple System Atrophy.
While I’m still with you, I wanted to share some items* that I have found to be particularly useful as a patient:
- Grabbers were a must and I had them all over the house early on because my balance was so bad, I’d end up on the floor with whatever I was trying to retrieve.
- A swivel board was helpful for getting in and out of the car when I was a passenger. I also have the Able Life Car Assist Grab Bar that is portable and attaches to the door latch while you are entering and exiting.
- The WaterPik Dual Action Brush/Floss helped when I became too uncoordinated to use regular floss and my grip was slipping on my electric toothbrush. On bad days, my hospice aide can use it to keep my teeth clean. I’ve received glowing reports from my dentist on my most recent exams.
- A toilet bidet attachment fits just under the toilet seat with controls on the side. I have limited range of motion in both arms so getting thoroughly clean after bowel movements was next to impossible. The bidet has prolonged my personal dignity in that situation where it has been lost in so many other areas of personal care.
- I have by my bed a three-tier cart.
- The top is a solid surface where I keep my laptop, tissues, and a clear lazy-Susan with 4 compartments. One compartment holds all medication bottles. Other compartments hold pens, dry erase markers, stamps, a magnifying glass, nail clippers/nail files, hand sanitizer, eye glass cleaner wipes, wrist BP monitor and finger pulse oximeter and anything else I use on a regular basis.
- Underneath there are two wire shelves. The first is level with my bed so all equipment (urine collection canister, suction machine, vertical power outlet tower, and nebulizer) is on that shelf within easy reach. The bottom shelf holds all the supplies (suction catheters, trach ties, 4×4 split gauze, etc.) in individual clear containers.
- I have a medical table at end of my hospital bed for meals and this is where I keep my “joy basket.” On days when I am having trouble finding my one piece of joy, I reach in the basket and blindly pull out one of the multitude of cards I’ve received over the years, and re-read the cards and hand-written well-wishes.
- Although I resisted it for years, I did finally need the hospital bed with rails for two reasons – REM Behavior Disorder (RBD) caused me to fall out of bed while asleep many times, and I needed a 45-degree incline to breathe more easily day and night. I finally got the bed through hospice and paid OOP for a Purple mattress topper.
I hope I have helped all of you along your journey. I would like to share the chorus from my favorite singer/songwriter Paul Thorn’s single “That’s Life,” a collection of words his mother would say to him when he called her. “Wipe that tear out of your eye. Behind the clouds the sun still shines. You’re in my prayers every night. Enjoy the journey, that’s life.”
* The MSA Coalition is not sponsoring the products linked above or receiving any profit or proceeds from purchased items. The included links are meant as a resource for our patients and care partners, and we encourage you to do your own research to find products that work best for you.
