TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘multiple Sclerosis’

SPEAK OUT! NewsBit . . . . . . Inosine Helps Brain-Injured Monkeys Recover Fine Motor Control

SPEAK OUT! NewsBit

Inosine Helps Brain-Injured Monkeys Recover Fine Motor Control

presented by

Donna O’Donnell Figurski

My husband, David, is a traumatic brain injury survivor since 2005. He is physically disabled as a result of his brain injury. As a molecular biologist from Columbia University, David is always searching for ways to improve his own life after his brain injury. He recently stumbled on this exciting research project, and we wanted to share this hopeful concept with others.

 

Disclaimer:

Neither David nor I is a medical doctor, and we are not suggesting any medical solutions. We are only publishing this article for your information.

 

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Inosine is a small molecule found in cells. Research with mice and rats has shown that inosine is released by stressed or damaged neurons. Inosine can turn on the genes for axon development. Axons are the long, threadlike membrane extensions needed for neurons to send an electrochemical message to other neurons. The new axons from undamaged neurons can rewire the brain (plasticity) to allow circuits to form that compensate for circuits lost from damage.

Adding inosine to neurons in culture stimulates the formation of more axons. Would inosine stimulate an increase in plasticity by increasing axon formation and thereby help recovery from brain injury? Consistent with this idea, neuroscientists found that rats recovered from brain injury better when inosine was present.pTqKnRpgc

Now neuroscientists at Boston University report testing inosine’s effect on a primate – the rhesus monkey. The study was small (8 monkeys) because monkey experiments are expensive, but, despite the small number, the results were significant. At the beginning, all 8 monkeys could easily grasp food treats with their dominant hand. The part of the brain needed for the required motor skills in the dominant hand was then deliberately damaged in each monkey. The 8 brain-injured monkeys were divided into two groups: 4 monkeys were treated by giving them inosine, and 4 were given a placebo. The researchers didn’t know which monkeys were getting inosine and which were getting the placebo.

After 14 weeks of treatment, the monkeys were examined for their ability to grasp a food treat. Three of the four inosine-treated monkeys grasped the food with their dominant hand normally. Fine motor control in the hand seemed to be the way it was prior to the brain injury. In contrast, the placebo-treated monkeys retrieved their food by using a compensatory strategy. The placebo-treated monkeys still had a problem with fine motor control in the hand.

mouse-hiThis preliminary study has extended evidence of the inosine benefit from mice and rats to a primate. The result indicates that inosine may one day benefit human victims of brain injury. Inosine is already in clinical trials for the treatment of multiple sclerosis and Parkinson’s Disease. Inosine appears to be safe – athletes have taken inosine supplements for decades.

Strictly speaking, this experiment addressed recovery of only a specific movement. The brain injuries were highly controlled – all were nearly identical, and they were in a specific area of the frontal lobe that affects fine motor control of the hand. Inosine experiments of this type have only been done in animal models. But even with all these caveats, there is reason to be optimistic. Inosine treatment may become a common human therapy for brain injury. Clearly more research is needed before inosine is shown to be useful in the clinic. (Full story)

 

(Clip Art compliments of Bing.)

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Survivors SPEAK OUT! . . . . . . Heather Love Leffel

Survivors SPEAK OUT! Heather Love Leffel

presented

by

Donna O’Donnell Figurski

Leffel, Heather Love MS survivor

Heather Love Leffel – Multiple (M.S.) Survivor

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

Heather Love Leffel

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

Toledo, Ohio, USA     heatherleffel419@gmail.com

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

I have multiple sclerosis (MS), which essentially is brain damage. I had my first symptom at 19 years old.

4. How did your brain injury occur?

Well, my mother and twin sister also have MS. I do believe MS has a genetic aspect to it, but as of now, they don’t know the cause of MS.

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

I first noticed my MS in 1999. I was at my son’s T-ball game. I looked into the sky, and suddenly my left eye saw white flashes, and a black lace went over my vision. This was my mother’s first symptom too. I knew in my heart I had MS.

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

None. I went directly into denial without passing GO (LOL) (a Monopoly reference). I didn’t want to know I had MS, so I ignored every symptom I had. I was in complete denial.

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

No, I was not.

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 have done a brief treatment of physical therapy for my balance and walking, but I stopped going. I shouldn’t have, but I did.

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

Oh my symptoms list is a mile long! I can name some major ones. I have issues with balance and memory. I have nerve pain that results in a burning limbs sensation. I also have excruciating headaches, blurred vision, vertigo, the “MS hug” (a tightening around the waist), spasticity, speech issues occasionally, and more.

10. How has your life changed? Is it better? Is it worse?multiple_sclerosis_believe_dream_hope_sticker-r9050a576f9804d99a628b40913eb66e5_v9waf_8byvr_512

In some ways, my life is better, and, in many ways, it’s worse. I have met some of the most amazing and wonderful people through this disease. I’ve also learned to slow down and appreciate life, but MS has taken so much from me. I lost my job, my fiancé, friends, financial stability, and the energy needed to be the mother I always was.

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

I miss working and having the money to fully provide for my children all the things I needed and wanted to.

gg6402838012. What do you enjoy most in your post-brain-injury life?

I most enjoy spending any time I can with my sons and also being an MS advocate.

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

I least like what my having MS has done to my family, and I dislike the fear I have daily that I’ve passed the monster to my children.

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

Honestly, acceptance happened fast for me – maybe because I knew in my heart for so many years that I had it, but was denying it. (I showed my first symptoms in 1999, but I didn’t break down and see a doctor until 2012.)

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

Yes. I lost my fiancé. The first year after my diagnosis was challenging. I had to stop working just three months after my diagnosis. That crushed me. I was going through depression. I was also having issues with trusting my fiancé, since he lived in another state due to the military. Long story short – my trust issues were justified. He cheated on me, got the girl pregnant, and secretly married her while with me (one year after my diagnosis and after seven and a half years together).

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

Oh my, yes! I have no social life. The only social life I have is Facebook really. I’ve definitely isolated myself.

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

I am my own caregiver at the moment. My 18-year-old son helps me a lot, but I wouldn’t call him my caregiver. I absolutely understand what it takes to be a caregiver. It’s a hard and selfless thing for someone to do. Caregivers deserve the utmost respect.

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

I hope to be married to a good man – someone who can look past my MS and see me for me. I hope to have a grandbaby. I hope my son is happily married and has an enjoyable life. I hope my youngest is enjoying college and living life to the fullest. Most of all, I hope and pray that neither of my children has multiple sclerosis.

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.

The most helpful thing I can say to you if you have MS is to allow yourself to grieve for the “old” you when you need to. Let it all out, and then pick up the pieces and move forward. You must allow yourself to grieve for who you once were and to grieve when things change because with this disease you are ever-changing. Allow yourself to feel it, and then accept it and continue to be the MS warrior that you are!

58df9ecb6c5b1b58ba8911d21946404420. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

My advice to others like me is to speak out. We need to understand that we didn’t choose MS; it chose us! MS is nothing to hide or to be ashamed of; neither is your MS story. To create awareness about this disease, we must speak about it. We must all raise our voices and be heard. One person can make change – it only takes one. Be the difference you want to see!

 

(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.

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Survivors SPEAK OUT! Lisa Dryer

Survivors  SPEAK OUT!  Lisa Dryer

presented by

Donna O’Donnell Figurski

11 Lisa Dryer Survivor 1 060115 281536_2048711670666_4659924_n1. What is your name? (last name optional)

Lisa Robin Dryer

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

Scottsdale, Arizona, USA     lisadryer@cox.net

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

At birth

4. How did your brain injury occur?

I was born twelve weeks too early. The NICU (neonatal intensive care unit) nurse who was in charge of me was also taking care of another baby, whom she deemed sicker. Our emergency calls often had false alarms. In this case, the nurse only had to tap me on the foot so that I would start breathing again. But, I went into cardiac arrest, and I lost oxygen to my brain. It was this incident that caused my TBI (traumatic brain injury). As a child, I never knew it as such, but instead as a “learning disability.” When I was seven, we found out that I was having a seizure a minute, which also most assuredly inhibited my learning. I’ve always had motor-skill and spatial relationship issues as well. In college, I realized something else was wrong. In 2004, it grew worse. I was searching for a diagnosis, but I was degraded and shoulder-shrugged for years.05 Lisa Dryer Survivor 5 060115 1238881_10200476055050272_1657456156_n

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

Last year, a friend, Hanna, dragged me to a hospital. At the time, we were both living on the East Coast. We were nannying between acting jobs and reveling in the history of the Potomac River. It was just a fun spa weekend for two best friends. But, half of my body failed to function. I was stubborn and tried to walk it out. I had a complete distrust of doctors at this point, but Hanna dragged me to the Emergency Room. They thought I might be having a stroke. My symptoms on the CAT scan (computerized axial tomography; also called a “CT” scan for “computerized tomography”) showed an abnormal brain. When they told me that, I laughed and said, “I know that already! Tell me something I don’t know.” So, they sent me to Washington, D.C., for an MRI (magnetic resonance imaging), and faster than you can say “MS,” it was said!

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

I don’t believe I had any treatments, but they certainly did some interesting testing on me!

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

No. However, I have since been concussed several times.

19 Lisa Dryer Survivor 7 060115 10154056_10202572349343208_1951490992_n8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)?

I have done inpatient rehab now twice, and I am currently doing outpatient rehab for the second time. I like to take pictures at rehab, so you can see some of my rehab and hospital journeys on my Facebook and Instagram accounts. I do physical, occupational, and speech therapies, and I’m supposed to be doing shoulder therapies.

How long were you in rehab?

Each visit was a month long, and I’ve had about three.

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

I have several issues: balance, sight, auditory, emotional, tactile, and sensory. I also have a problem with perception.

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

This is a very hard question for me. I am the kind of person who likes to roll with the punches that life brings me. Right now, I think this must be where I am supposed to be and what I am supposed to be doing. I have met so many wonderful people who are really grateful that I am in their lives – being just the way that I am and wholly accepting me. That is a really beautiful thing. I really love that I can write about positivity in the face of adversity, that I have such a great response, and that I see that so many other beautiful communities are forming.

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

I miss my dog, and I miss my trailer. I miss acting.

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

I have to say I really like my friends – both online and those who have come out to meet me. I have a special place in my heart for them. I met my current boyfriend online. We started talking more in one of my groups. He asked if he could send me flowers. He then sent me cards. Then he flew from Cleveland, Ohio, to Arizona to take me on a date! I think the rest will be romance history in the TBI community!

13. What do you like least about your brain injury?08 Lisa Dryer Survivor 8 060115 10527549_10205510907245319_3908859801295010883_n

My back spasticity

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

Learning to put a smile on and taking some deep belly-breaths have helped me.

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

Living with my mother again at 33 has been interesting. We have a very strong bond, but we are almost too close. We clash more than a bit. But, we have a lot of laughter and smiles too.

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

I really don’t have a social life anymore.

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

My mother is my main caregiver. Until last year, I was sometimes a primary caregiver as a live-in nanny for children with disabilities. It was a job I loved. I also worked as a teacher at the Head Start program for the Los Angeles Unified School District and for needy children in other school districts.

1150365_10201334798525285_296956465_n18. What are your plans? What do you expect/hope to be doing ten years from now?

As John Lennon said, I’d like to be happy.

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.

I have three recommendations:

  1. Try to continually be finding the beautiful around you.
  2. Find your center, and try to stay calm.
  3. If things seem off, they usually are. Talk to someone.

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

No matter what you think, know that you are a powerful, beautiful person and that you can bring so much joy to this world. I have seen so many people in pain who just needed a smile, a word of kindness, or a hand-squeeze. No one in life is that different – we all need love. People also need education. Don’t be afraid to raise your voice and tell your story. And, remember that you are beautiful.

Thank you, Lisa, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

(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 Lisa.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

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

If you don’t like my blog, “Share” it with your enemies. I don’t care! Feel free to “Like” my post.

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No memory of the day that changed my life

My name is Michelle Munt and this is my story about surviving a brain injury and what I continue to learn about it. This is for other survivors and their loved ones, but also to raise awareness of what can happen to those in an accident. This invisible injury too often goes undiagnosed and it can be difficult to find information about it. I will talk about things that have helped me as I continue to recover and invite others to see if it works for them too.

Everything and nothing. GM1123 😊

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