Holding Steady on Shaky Ground
Leslie Wolf, person with CBD (Diagnosed 4 years ago)
- Timeline
- 2012 – loss of use of left side
- Rotator cuff surgery
- First brain MRI – showing brain shrinkage
- 2013 – at the worst, started seeing every doctor possible
- 2014 – first diagnosis of CBD/CBDS
- Phase 1 trial to treat CBS and PSP
- 2017 – Living on Carbidopa and Levodopa with Entacapone
5 years and holding steady
Symptoms
-
- Clumsiness
- Cant type with left hand
- Holding arm
- Jerkiness
- Slowness of movements
- Stiffness
- Professional Clinical trial volunteer – part of what helps
- Volunteering for every single possible trial
- Done 2 sleep studies
- What’s working?
- Studies
- Meds every 3-4 hours
- Working out & water aerobics
- Having my own business
- Supportive husband
- Kids
- What’s next?
- Communication is great
- Online program