Base

Name

Susan Hoerber

Nickname

susan-hoerber

Year of Birth

1956

Gender

Female

Location

Southeast Florida

Relationship

Patient

Short Bio

Diagnosed ALS Jan 2018…misdiagnosed for four years . During those 4 years went thru 3 level cervical fusion and 2 level lumbar fusion.  Had 2 EMG’S several neurologist called my dying and regeneration on nerves neuropathy ..but they only did EMG’S on my right hand and foot ..called stress and overweight as cause for symptoms . Finally found a neurologist that believe me that there was something terrible wrong going on with me and did full body EMG and told me it was ALS and sent me to Dr Verma University of Miami ALS Clinic. When diagnosed in January 2018 was quadriplegic and diaphragm muscles were at 50%.  Currently attending Holy Cross ALS Clinic in Ft Lauderdale.  Before diagnosis I have always been very active, and adventurous, loved to cook (500 cookbooks )and entertain, animal nature lover, volunteer from community /school/church. Currently I participate in 2 biomarker research programs , diaphragm function now 33% and hope by donating my body to science it may be of some help finding a cure to this bastard of a illness they call ALS.

How did you hear about us?

ALS Website

How long have you or the person that you are caring for had ALS?

5 years (1 1/2 officially )

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