Story about Multiple Systems Atrophy .

Mom's battle with MSA

Feb 14, 2016

By: Hasan


My mom , Khadija , was diagnosed with Parkinson's disease in 2011 due to difficulty in fine movements like inserting a key into the keyhole in the car. Mom was not responsive to medications prescribed by her neurologists nor did she have a unilateral resting tremor that is typical for PD. She later developed autonomic symptoms with time like passing out after standing due to a drop in her blood pressure , whilst at times here BP would fluctuate from 220 systolic to 60 and she would pass out. We were quite perplexed and she also had problems regulating her temperature in high heat as well. She also developed painful dystonias in her feet regularly at night.  She was not able to urinate so we had to catheterise her daily as well which brought in several bouts of UTIs regularly some which required high-end spectrum antibiotics and in-patient hospitalisation. Mom was sent to Lebanon at the expense of our government for a consultation regarding candidacy for DBS. There her neurologist after few years of battle with the disease changed her diagnosis to MSA. Developing autonomic symptoms is a bad prognostic sign especially early on in the disease. Mom would go with dad as her caretaker abroad paid for in full by our government and her medications would be adjusted while receiving physiotherapy as well. With time we noticed her speech was difficult to understand , could not salivate adequately (xerostomia) which created problems with feeding , also could not defecate so we had to do an enema. We also hired a nurse to help with hospice care at home. Mom was bed-ridden starting early 2015. That was also a poor prognositc indicator as per studies published on MSA. Mom lost her battle against MSA on 22nd of October 2015 but her spirit and legacy lives on amongst us in our hearts and minds - ''_To live in hearts we leave behind is not to die_''

Know someone who should read this story? Share it

1 comment
1

Thanks for sharing your mom's story Hasan

Commented 8 years ago Pam Bower 2952

Login or register to leave a comment


What is Multiple Systems Atrophy

What is Multiple Systems Atrophy

Multiple Systems Atrophy prognosis

Multiple Systems Atrophy prognosis

Latest progress of Multiple Systems Atrophy

What are the latest advances in Multiple Systems Atrophy?

ICD9 and ICD10 codes of Multiple Systems Atrophy

ICD10 code of Multiple Systems Atrophy and ICD9 code

Prevalence of Multiple Systems Atrophy

What is the prevalence of Multiple Systems Atrophy?

Multiple Systems Atrophy jobs

Can people with Multiple Systems Atrophy work? What kind of work can t...

Multiple Systems Atrophy cure

Does Multiple Systems Atrophy have a cure?

Is Multiple Systems Atrophy hereditary?

Is Multiple Systems Atrophy hereditary?