TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘“No Stone Unturned”’

Caregivers SPEAK OUT! . . . . . . Joel Goldstein

Caregivers  SPEAK OUT!  Joel Goldstein,

(father of survivor, Bart Goldstein, and author of “No Stone Unturned”)

presented by

Donna O’Donnell Figurski

 

 

14 Joel Goldstein Speaker's photo

Joel Goldstein – Caregiver of son, Bart & author of “No Stone Unturned”

1. What is your name? (last name optional)

Joel Goldstein

2. Where do you live? (city and/or state and/or country) Email? (optional)

New Paltz, New York, USA

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

Our son Bart was sixteen when he suffered a severe TBI (traumatic brain injury). He was a passenger in an auto accident.

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I became Bart’s caregiver on January 29, 2001, the day of his accident. My wife, Dayle, and I were and remain Bart’s main caregivers. We remain involved in Bart’s life, but he has now progressed to semi-independence. He resides in his own apartment an hour and half away. We visit and break bread with him every Sunday and on holidays. We participate actively with his “team,” made up of a Benefit Coordinator (a certified specialist or a social worker who is an advocate for the survivor, a CIC (Community Integration Counseling) counselor, and an ILS (Independent Life Skills) trainer.

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

My wife and I were responsible for our eleven-year-old daughter, Cassidy.

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

I was Director of Human Resources at a medium-sized company. I was lucky enough to be able to take whatever time was needed to care for Bart, especially while he was in the acute phase. My wife, Dayle, worked at home as a Reiki Master. She stopped most work to care for Bart.

Joel Goldstein & Son, Bart

Joel Goldstein – Caregiver for Survivor son, Bart

7. Did you have any help? If so, what kind and for how long?

Friends and family helped look after our daughter while Bart was an inpatient (four months). Close friends and a wider “conspiracy of decency” in our community helped for several years, post-injury. Here is a short YouTube video, “No Stone Unturned: Traumatic Brain Injury and the Conspiracy of Decency,” that addresses that issue:

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

My and my wife’s support began immediately in the hospital.

9. Was your survivor in a coma? If so, what did you do during that time?

Yes. Bart was in a coma for 30 days. Dayle and I were at his bedside.

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

Bart had all the standard therapies, plus many unconventional ones. Here is an article, “Fighting the “TBI Wars”: New Alternatives for TBI Survivors,”published by Brainline, that addresses this question succinctly:

11. What problems or disabilities of your brain-injury survivor required your care, if any?

03 Joel and Bart Newspaper

Joel Goldstein (caregiver) and son, Bart – brain injury survivor

Bart’s injury was very severe – 30-day coma, nine-month rehab, and then years at home reintegrating. He struggled with the full gamut of intellectual, physical, and emotional deficits that come with a severe TBI. Gradually, with time and alternative therapies, these struggles have eased very considerably. Today Bart lives semi-independently, in his own place, with a part-time job, and with new fiends. He is moving on with his life.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

Our focus for over a decade was almost entirely Bart-centric. Pastimes were eliminated (e.g., Taekwondo) and volunteer activities were diminished. (I was president of our local branch Y at the time of his accident, but I resigned shortly after.) People we were accustomed to seeing regularly (especially Bart’s friends and their families) dropped away. We were angry about the friends moving on with their lives, but eventually we forgave and moved on too. Life is both better and worse, in different respects.

13. What do you miss the most from pre-brain-injury life?

I miss old hobbies, sports, travel, and activities that have been shelved in order to be more focused on essentials.

14. What do you enjoy most in post-brain-injury life?

My life is more simplified and focused. I have a new sense of mission and compassion. We have founded the BART Foundation (Brain Alternative Rehabilitative Therapies) – a 501(c)(3).

15. What do you like least about brain injury?

I dislike the timeline – Bart’s recovery from his TBI will be a lifelong challenge. Some issues, like perseveration, are terribly stubborn.

16. Has anything helped you to accept your survivor’s brain injury?

18 Joel Goldstein & Bart

Bart Goldstein – Survivor with Father, Joel Goldstein (author of “No Stone Unturned”)

I have been helped by the usual suspects: faith, hope, love, humor, music, family, friends, and fun.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

We’re all walking-wounded in some ways – reminiscent of PTSD (post-traumatic stress disorder).

18. Has your social life been altered or changed and, if so, how?

The caregiving life can often be isolating.

19. What are your plans? What do you expect/hope to be doing ten years from now?

We have formed the BART Foundation (Brain Injury Rehabilitative Therapies), a 501(c)(3) educational charity. The mission of The BART Foundation is to promote better outcomes for brain-injury survivors by answering three questions – which alternative therapies are likely to work, where can they be found, and how can they be afforded?

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

Our best advice to caregivers is succinctly summarized in this article. “When the Dust Finally Settles: Strategies for the Long-Term Caregiver,” published by Brainline.

11 Cover Photo No Stone Unturned

“No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury,” by Joel Goldstein

 

To learn more about Joel Goldstein and his son, Bart, read, “No Stone Unturned – A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury.”

 

(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 SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Survivors SPEAK OUT! . . . . . . Bart Goldstein

Survivors SPEAK OUT! Bart Goldstein

presented

by

Donna O’Donnell Figurski

Bart Goldstein 2

Bart Goldstein – Survivor

1. What is your name? (last name optional)

Bart Goldstein

2. Where do you live? (city and/or state and/or country) Email (optional)

Delmar, New York, USA

3. On what date did you have your brain injury? At what age?

My brain injury happened on December 29, 2001. I was almost 17.

4. How did your brain injury occur?

I was riding with friends in an auto, and we had an accident. I was in the back seat. We were just teenagers clowning around. There were no drugs or alcohol.

5. When did you (or someone) first realize you had a problem?

I was in a coma after the accident.

6. What kind of emergency treatment, if any, did you have?

I was airlifted to emergency surgery. Later I was given a trache and a G-peg (feeding tube inserted directly into the stomach by percutaneous endoscopic gastrostomy).

7. Were you in a coma? If so, how long?

Yes. I was in a coma for a month.

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?

Bart Goldstein & Dog

Bart Goldstein – Survivor

I had speech therapy, physical therapy, and occupational therapy as an inpatient for three months at Helen Hayes Hospital. Then I had five more months of therapy as an outpatient at the hospital.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

I have problems with walking, my speaking sensibly, control of anger, partial blindness, and memory.

10. How has your life changed? Is it better? Is it worse?

I am much more of a planner now than I was prior to accident. An article, “The Journey Back,” from Brain Injury Awareness Month a couple of years ago answers this question and most of the others: http://spotlightnews.com/uncategorized/2014/03/20/journey-back/

11. What do you miss the most from your pre-brain-injury life?

See the Spotlight article (address given in the answer to the question 10).

12. What do you enjoy most in your post-brain-injury life?

See the Spotlight article (address given in the answer to the question 10).

13. What do you like least about your brain injury?

See the Spotlight article (address given in the answer to the question 10).

14. Has anything helped you to accept your brain injury?

I’ve been helped by my Christian faith, my parents, and my sense of humor.

15. Has your injury affected your home life and relationships and, if so, how?

See the Spotlight article (address given in the answer to the question 10).

16. Has your social life been altered or changed and, if so, how?

See the Spotlight article (address given in the answer to the question 10).

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My folks are my main caregivers. Caregiving takes a lot of love and more.

Bart & Joel Goldstein

Bart Goldstein – Survivor with Father, Joel Goldstein (author of “No Stone Unturned”)

18. What are your plans? What do you expect/hope to be doing ten years from now?

I hope to continue to heal and to find a good woman and settle down.

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.

Learn patience. It’s a long haul.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Keep your faith and your sense of humor. Try alternative therapies.

 

(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.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

If you REALLY like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

SPEAK OUT! Guest Blogger Joel Goldstein

SPEAK OUT! Guest Blogger Joel Goldstein

What Veterans Need………….and Deserve

 

Boy Blogger thChristmas 2001 my wife and I were plunged into a parent’s worst nightmare – a car accident resulting in our teenager’s traumatic brain injury.  After a month long coma, he gradually emerged with severe and disabling cognitive, emotional and physical deficits.

Eight months of grueling hospital therapies and the school district agrees with the hospital – Bart is not ready to return to class and would be better served by placement in an institution. We railed against warehousing our 17-year-old son in a convalescent home and fought time and again to win Bart a chance to struggle, heal and progress.

We were determined to keep the bar up, set with difficult, but attainable, goals, and then raise the bar again and again. Who knows for sure how far anybody can go? It takes a little faith. These officials were not mean-spirited so much as driven by economics and statistical models of probable outcomes, without taking into account the character of the boy or his family.

We began exploring nonconventional therapies, cobbling together an unofficial “medical board” of trusted physicians. “Members” didn’t know each other or that they served on a “board.” If we found a promising therapy, we’d ask each of them whether it might do any harm. Some exciting approaches failed this Hippocratic test. Eventually we tried several therapies. Though harmless, some proved useless too. Others, including hyperbaric oxygen (HBOT), craniosachral therapy (CST), neurofeedback and high doses of Omega-3 fish oils, were remarkably successful, gradually transforming Bart’s life prospects. Successes were anecdotal, but a neuropsych exam several years after the accident reported that the examiner had hardly ever seen such improvement in someone so severely injured.

Today, with high school and even a semester of college under his belt, and a couple of years of cognitive therapy, Bart is a lively, charming young man, living nearly independently in his own apartment. How different the outcome had we heeded the advice of well-meaning busy bureaucrats. Brain injury is far and away the leading cause of death and disability in young people. It leaves roughly 2% of the population permanently disabled, yet remains a stubbornly invisible epidemic. With the controversy surrounding concussions in sports and TBI, the signature injury of this generation of wounded warriors, that may be finally changing.

TBI will remain a tragic legacy of wars in Iraq and Afghanistan for a lifetime. According to the Woodruff Family Foundation Remind.org, there are 320,000 TBI survivors among combat veterans. Today the elements of the VA and DOD are experimenting with HBOT for severely wounded warriors. Sheer weight of numbers presents a unique opportunity to improve outcomes for survivors, military and civilian.

Like other nonconventional therapies that helped Bart, HBOT is relatively safe, inexpensive, easy to deploy and scalable. For the cost of a couple of F-16 fighters, one could outfit and staff 300 TBI treatment centers in existing VA and DOD facilities around the country. Technicians and therapists can be trained to deliver HBOT in months, not years; medics, corpsman, LPNs, and EMTs are all suitable candidates. As an alternative to setting up centers in VA facilities, one might issue vouchers directly to veterans’ families. Private clinics should spring up to meet the demand.

After wounded veterans have been treated, centers could migrate to the civilian sector, helping the wider fellowship of TBI survivors, most of whom have no access to these treatments. Thousands might leave nursing homes, cut back on their meds and live more fulfilling lives. Nothing we could do for so little could ease the suffering of so many.

Scientific proof is still the gold standard in medicine, but in its absence what risk is there in trying alternative therapies with well-established safety records? (Divers have safely used HBOT to prevent the “bends” for 200 years.) Of course, nothing is 100% safe and effective, not even aspirin or acetaminophen. In much of Europe, HBOT is already standard treatment for TBI. The obstacles to adoption here seem to be more bureaucratic – doctors, hospitals, the FDA and insurers have yet to sort out reimbursement protocols.

For survivors of severe TBI, unconventional therapies are not merely a reasonable option, they are a necessity. Best practices of conventional medicine only take us so far, often ending at the nursing home door or heavily medicated at home, facing long empty hours and overwhelming family resources. Survivors are already more susceptible to a number of conditions, including Alzheimer’s, Parkinson’s, suicide and subsequent TBIs. To do nothing – to ignore safe alternative therapies – is to make a decision fraught with risk. Faced with this existential dilemma, we chose to try for a better outcome. Military families of wounded heroes, who have already sacrificed so much, deserve no less.Joel Goldstein & Bart

 

Joel Goldstein, author of No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury, Potomac Books, has written about TBI for Exceptional Parent, Brainline.org, Adoption Today, and Military Special Needs Network. To learn more or to contact Joel: www.tbibook.com.513KpXRBWqL._SY344_BO1,204,203,200_

 

Thank you, Joel.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

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No memory of the day that changed my life

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