susan's interview
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How did all start?
1998 diagnosed DM type 1. Then in 2011 had my thyroid ablated for “hot toxic nodule”. Developed back spasms. Started having falls and restless legs, explained as DM neuropathy. Bloodwork done in Jan. this year showed high GAD. Follow up EMG confirmed SPS.
Do you already have a diagnosis? How long did it take you to get it?
From bloodwork to EMG, a couple months.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Endocrinology Cardiology Neurology. Most useful has been Endo.
What has been the most useful thing for you so far?
Insulin and Thyroxine, can’t live without them. Just now discovering SPS therapies, so far not so great.
What have been your biggest difficulties?
Accepting SPS as part of my new normal. This is progressing so fast.
How has your social and family environment reacted? Have your social or family relationships changed?
Everything is different. I don’t know how to deal with this, how can anyone else.
What things have you stopped doing?
Driving, working a full forty hour week. Any activity that is more then 3 hours long. Traveling.
What do you think about the future?
I’m freaked out about that.
So far, which years have been the best years in your life? What have you done during them?
I have enjoyed an amazing life, I’ve seen many things. And known incredible people.
What would you like to do if you didn’t have your condition?
Drive, travel, get back to me.
If you had to describe your life in a sentence, what would it be?
What an amazing ride it has been!
Finally, what advice would you give to a person in a similar situation?
SPS is a chronic disease, pace yourself.
