Survivors SPEAK OUT! Susan Shacka
Donna O’Donnell Figurski
2. Where do you live? (city and/or state and/or country) Email (optional)
Sioux City, Iowa, USA
3. On what date did you have your brain injury? At what age?
I acquired a brain injury in 2009 at age 51.
4. How did your brain injury occur?
My brain injury occurred after the removal of a lap-band procedure that caused complications. I couldn’t keep anything down – not even food or water.
5. When did you (or someone) first realize you had a problem?
My stomach felt numb for a few days after the removal. I couldn’t eat for two months, and I lost 80 pounds in that period. I was so weak. The first angel in my life was Suzanne. We just met.
6. What kind of emergency treatment, if any, did you have?
Within fourteen days, I couldn’t walk. I went to the hospital via ambulance, not knowing that I would never come home; lose my apartment, car, and cat of ten years; and lose a lot memories and collectibles. I had double vision within two weeks of the lap-band removal. Prior to removing the band, my potassium was so low that I had to take it straight (three times a day in the hospital – Ugh!). They immediately ordered a CT (computerized tomography) scan, a spinal tap, Xrays, etc. First, I was given cortisone shots and IVs because I was dehydrated. I requested “Ensure” to bump up my vitamin levels, but it made my blood sugar high. Then they realized the cortisone was making it high, so they stopped. Just to let everyone know, I never went back to that surgeon or that hospital ever again. I was treated at another hospital. I was all alone and scared. All the tests were done during the first week. Doctor after doctor came, and they still didn’t know what the cause was. They thought it might have been Multiple Sclerosis at some point. I was given IVIg (intravenous immunoglobulin), and I had insurance people and neurologists coming in and out. The head neurologist – bless Dr. Shen! – found out that I had Guillain-Barré syndrome (named after two French doctors). It is both a neurological and an autoimmune disease. One can be paralyzed, which I was from waist down. (That numbness on my waist and the tripping were clues.) Dr. Shen immediately ordered eight hours a day of IVIg to neutralize the antibodies attacking my system.
8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?
I was in rehab for eight months. While in the hospital, I had to do baby steps and learn how to sit, move, and touch hands with the occupational therapist. It was hard, as I had to take Benadryl during each session to help with symptoms. The medication worked so well that it sometimes knocked me out. The ultimate indignity occurred before I left the hospital. It is clear in my mind to this day. I had to use the sliding-board to get into the wheelchair. Eventually I went to an acute rehab facility. I am still getting occupational and physical therapies twice a week through a government program called PACE (Programs for All-inclusive Care for the Elderly). Everything is paid for through them: a bath aide who cleans while I shower, meals at home, occupational and physical therapies, my learning how to write, glasses, etc.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
My personality toward my family has changed – I just want to be part of them. I use my “Cadillac” a lot – my walker! But, I risk my safety when I walk the dog. I have residuals from Guillain-Barré syndrome – neuropathy pain and pins and needles in my hands. I have a special type of shoes, as I don’t have flexibility in my feet. And, I have use of only my left hand. After being a secretary for top doctors, a marketing director, vice presidents, etc., I now type with one finger. To top things off, and there is no connection, I acquired another neurological/autoimmune disease (ataxia) in 2013. There are over 60 types. I guess I have Cerebellum Ataxia. This is a movement disorder similar to Parkinson’s Disease. (It’s Michael J. Fox who will help find a cure!) I knew something else was wrong – I was dropping things, I had a problem with balance, I was slurring my words, and my fine-motor skills deteriorated. By this time, I had moved back to my hometown, where my aunt and cousins live. But, it turned out they rejected me – it was hurtful knowing that something was wrong with me. The local contact at Brain Alliance knew I needed to see neurophysicist. I was diagnosed with PTSD (post-traumatic stress disorder). My neurologist did blood test after blood test (over 15 vials one time). He wasn’t about to give up. Luckily, my neurologist knows the neurophysicist, and they conferred about me. I did have to go in for emergency IVIg treatments for my ataxia. My anti-GAD (glutamic acid decarboxylase, an enzyme) antibody titer (a marker for cerebellar ataxia) was high. It was over 250; normal is 0.10.
10. How has your life changed? Is it better? Is it worse?
I moved closer to my sister and her brother-in-law, which helps so much. I am going to church and meeting new people. I changed my Medical Power of Attorney to someone who gets me and my problems; goes to my church; understands about depression and, more importantly, disability, as her husband had a stroke. Bless both!
11. What do you miss the most from your pre-brain-injury life?
I miss driving and working.
12. What do you enjoy most in your post-brain-injury life?
I would still be living in California.
13. What do you like least about your brain injury?
I’m homebound a lot!
14. Has anything helped you to accept your brain injury?
I spend time at MPOA once a month and do bible study. I live in a place with older people (80s), but I want to spend more time with people my age. I am 57.
15. Has your injury affected your home life and relationships and, if so, how?
I find it hard to meet people.
16. Has your social life been altered or changed and, if so, how?
Meeting people is difficult, as it costs money for the handicap bus.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
I have a bath aide twice a week – no other caregiver. My family says they’ll take me grocery shopping.
18. What are your plans? What do you expect/hope to be doing ten years from now?
I hope to pay off my bills and move to another place.
19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.
Get involved; find a church. For me, getting a pet has been wonderful for my mood. Medication has been important. Don’t be embarrassed about seeing a counselor. It has helped me so much.
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Understand that it’s not your fault. For me, I did the lap-band upon the suggestion of a doctor. I also did it because I didn’t want to be like my mother, who was extremely overweight. I eventually lost 150 pounds – half of me!
You can still find your passion. I am administrator for my disease support-group on Facebook, called “Ataxians Helping Other Ataxians,” which in about eight months has over 860 members. This is my passion. I still have the need to help people. I was in the local newspaper and on TV and radio. Now I am working on a petition to get a spokesperson. It is listed “Spokesperson needed….” Please vote!
Bless you all for reading this! Love each other more. Say it more, as life is short!
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.
(Photos compliments of Susan.)
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