Describe your life at your healthiest point.
I’ve always been huge into volunteering, so I volunteered at hospice and the local ambulance. But, truly college was my healthiest time in life, before any autoimmune issue arose. I ran at least six miles a day. I felt strong.
How many years before your diagnosis were you experiencing Stiff Person Syndrome (SPS) symptoms?
Describe your most debilitating symptoms.
I have trouble with activities of daily living. Standing for over two minutes is difficult. Now even walking is becoming very hard. So difficult to shower, brush teeth, dress. So hard to put on shoes. Hard to move in general, especially when lying down. Swallowing is a huge issue. I’m in therapy twice a week for speech and swallowing. I cough a lot. Fatigue is so awful, and I cannot even tell you how bad the full body spasms are. It worries my husband. I cannot cook. I do not drive..
Describe treatments you have tried, what has worked and what has not.
We keep increasing IVIG, and I am getting hydration – 65 grams weekly, Baclofen and valium 3 times a day each. PT, OT, speech and swallow therapy.
Describe a time you received compassionate care.
None yet. Almost in 2021.
Describe how SPS has changed you.
It has made me more in love with my life, because every day I wake up I know I made it another day. It has isolated me I had to go on Disability, which was tough.
I wrote a book that has a lot to do with SPS, “Annie’s Song: Dandelions, Dreams and Dogs” (Release date: 3/14/23). I was a book reviewer and had to stop interviewing authors and reading a book a day. I sleep too much. I am often embarrassed to go on social outings, which is so not like me.
What brings you joy?
My dogs bring me so much joy, interviewing authors when I am having a good day, writing classes, teaching book reviews, etc. teaching all I used to do for the next generation. All of my friends amaze me with so much love. My ZTA Sorority Sisters and One Love Dog Rescue family spoil me.
I’m blessed with a supportive husband and in-laws.
What do you want people to know about you?
My body will be given up for science, so my hope is something can be learned from my dealing with SPS, and other rare diseases. I like to believe I laugh a lot and make others laugh. I don’t want to only be known for having SPS, but I’d like to share my experience fully so that anyone new to the diagnosis or in the medical field can learn something. I want to make people more aware of being kinder to disabled people. I am thrilled about my book being released in March. Any and all proceeds are going to various charities, including The SPSRF.
I really want to make a difference.
Occupation/previous occupation, if disabled.
I was an Executive Assistant for a Microsoft distributor.
Misdiagnosed? With what.
Yes. ALS, Parkinson’s, MS.
What do you want The SPSRF to achieve?
Find a cure one day.