Tag: Brain Injury Association Massachusetts

A Family Member Spotlight: A Mother’s Story

This week we are pleased to introduce Kristin Olliney and her daughter Isabella, who suffered brain damage from sudden acute encephalitis at  four-and-a half years old. This is the final blog in our series from the Brain Injury Association of Massachusetts (BIA-MA) and was written by Lauren Byrnes, Marketing and Communications Associate.

 

Kristin and Isabella Participate in the BrainInjuryAffects Campaign
Photo courtesy of biama.org


The morning of Nov. 25, 2010 was like any other Thanksgiving Day for Kristin Olliney and her four-and-a-half-year-old daughter Isabella. However, it was on that day that their lives changed forever.

“She was fine all day,” explains Kristin. It wasn’t until 7:00 that night that Isabella started “screaming” that she had a migraine and needed to throw up. By 10:30 she was confused and dehydrated. Twenty-four hours after Isabella had complained of a migraine, she was “crashing and literally dying” at the hospital, explains Kristin. Isabella had come down with sudden acute encephalitis.

“Everything happened in an instant,” she says. Isabella was in a drug-induced coma and then her own coma. “When she finally woke up, she was like a newborn,” says Kristin. “She couldn’t lift her head up.”

The brain damage caused by sudden acute encephalitis has caused Isabella, who was once advanced for her age, to be developmentally and behaviorally delayed and to have seizures, tics, migraines, anxiety, symptoms of ADHD, mood disorder, aggression, OCD, sensory issues, depression, learning disabilities, visual and audio misperceptions, cognitive disorder and separation anxiety. Additionally, she could not walk or even move her arms and legs at first.

Despite doctors’ beliefs, Isabella survived. “My daughter is the one-in-a-million to survive and she truly is a miracle,” says Kristin.

Isabella spent nearly a month in the hospital, which included the time she was hospitalized for sudden acute encephalitis, as well as in-patient rehabilitation. Kristin says that she was never told how much rehabilitation would be needed or of the long journey they had ahead of them.

“I thought when we got out of the hospital, in six weeks life would be back to normal,” she says. Brain injury “is a life-changer. It’s not like a broken bone.”

After Isabella got out of the hospital, she started receiving out-patient therapy, including speech, occupational and physical therapy. She now receives behavioral therapy as well. Isabella has also had 80 hyperbaric oxygen treatments, a therapy which Kristin believes all brain injury survivors should have access to. The hyperbaric oxygen treatments have helped Isabella sleep through the night, remember life before her injury and with empathy,” Kristin says.

“She has made progress,” she says. “She’s so determined.” Although doctors wanted to put her in a wheelchair, Isabella refused and instead, learned to walk again. A year ago, she couldn’t put four words together and now she’s able to form sentences.

“She’s come really far … but she has a long journey ahead of her, but we’ll take that together, too,” says Kristin, who refers to her and her daughter as Team Isabella. With Isabella’s determination, their “team” of doctors and the combination of therapies and medication, Kristin has hope that one day her daughter will be able to do everything she dreams of, like being a “pet doctor.”

“I just want her to be happy and for her to do all the things she wants to do,” says Kristin. “I’m not settling for her. She works so hard [every day] which makes me work even harder.”

The Brain Injury Association of Massachusetts provides support services to brain injury survivors and their families, offers programs to prevent brain injuries, educates the public on the risks and impact of brain injury, and advocates for legislation and improved community services.

Kristen Olliney is featured as a guest blogger in three additional “Mommy of A Miracle” series posts.

To see other BIA-MA Blogs go to  “An Instant Can Change Your Life Forever”

Brain Injury Affects A Family – Three Generations

This week we are pleased to introduce Joanne Coggins, a stroke survivor whose personal story inspires us all. This is the third blog in our series from the Brain Injury Association of Massachusetts (BIA-MA) and was written by Lauren Byrnes, Marketing and Communications Associate.

Karen Kelly and Family
Photo courtesy of biama.org

It was Oct. 13, 2008 when Karen Kelly received a call that would change her and her family’s lives forever. She was told that her mother, Joanne Coggins, who was visiting a friend in North Carolina, had a staph infection from dental work she had weeks earlier and was going to need surgery for acute bacterial endocarditis. Doctors needed to remove a growth on her heart which was caused by the acute bacterial endocarditis. During surgery, a piece of the growth detached and traveled to her brain, causing her to have a stroke.

Karen and her sisters rushed to North Carolina to be by their mother’s side. Because of the stroke, Joanne lost her abilities to speak (termed aphasia) and eat and had no strength to be able to walk. The right side of her body was also affected.

Because Joanne was being treated in a North Carolina hospital, staff expected her to receive care at a nursing home or acute rehabilitation center in the state, despite Karen’s wishes to take her home to Massachusetts. The judge granted Karen temporary guardianship of her mother, who was unable to communicate on her own behalf, so that she could be transported to Massachusetts for care.

Joanne received occupational, physical and speech therapy. She learned to swallow and eat again—both enormous accomplishments—and was able to regain enough strength to walk. Joanne now lives at home with a 24-hour caretaker. However, her aphasia continues to be a challenge.

“Everything she can do we’re so grateful for,” explains Karen. “Over time she has learned to compensate [speech] communication skills by learning different ways to communicate.”

Regardless, Joanne’s aphasia is a constant struggle. Joanne is aware of what is happening around her and knows what she wants to communicate, but is unable to find the words, which can be incredibly frustrating for her. “It really upsets her,” Karen says.

Despite the challenges she faces, Joanne remains determined to regain the skills she lost. She now receives speech therapy through a unique program with graduate students and is learning to form sentences—something she was unable to do for the first three-and-a-half years after her stroke. “She’s been able to communicate so much more,” Karen explains. “Her expressive language is so much better.”

Karen works with her mother on other skills, such as cooking, writing checks and verbal exercises even while they’re in the car driving to appointments. Joanne remains determined not to let her stroke get in the way of her goals. She’s even learned to kayak and ride a bike, so she can ride with her granddaughter to the park.
Joanne’s granddaughter, who is learning to read and write, inspires her because they can both learn together. “It motivated my mom to have someone to go through it with,” says Karen.

Although the family has a long journey ahead of them, Karen says they are hopeful. They want to see Joanne drive again, speak more fluently, be able to read out loud to her grandchildren and write on her own without having to copy the words.

“We don’t concentrate on the things she can’t do,” Karen says. “The more she learns the more independent she becomes.”

Although Karen says she knows they can’t change their circumstances, they want to change people’s lack of knowledge about brain injury. “I want people to know how important it is to know about brain injury,” Karen says. “One out of six people each year are affected by brain injury and if it’s not you, it’ll probably be someone you know.”

The Brain Injury Association of Massachusetts provides support services to brain injury survivors and their families, offers programs to prevent brain injuries, educates the public on the risks and impact of brain injury, and advocates for legislation and improved community services.

To see other BIA-MA Blogs go to  “An Instant Can Change Your Life Forever”

Tips for Getting Through Concussion Recovery

This week we are pleased to welcome Madeline Uretsky, the second guest blogger in our series from the Brain Injury Association of Massachusetts (BIA-MA).

Madeline-Uretsky-BIA-MA
Photo courtesy of biama.org

 

Madeline is a BIA-MA Ambassador Speaker, still  recovering from a concussion she had in 2011.  Today she shares her tips for navigating concussion recovery. This blog was posted on their site on march 18, 2013.

When I began my day on October 13, 2011, I was a happy-go-lucky sophomore in high school looking forward to my afternoon soccer game. When I finished my day, I was a high school student who had suffered a life-changing concussion that would keep me out of school for a year. I have learned many things about myself and about my brain during this time, so I have decided to share some of my experiences of what has helped me to navigate my way through this. Although I am still suffering from many symptoms 24/7, I can say that there are some things that can help along the way.

1. Brain Rest – I was put on complete brain rest for the first three months of my concussion. I did not watch TV, read, use my computer, exercise, or use my cell phone. In fact, I did absolutely nothing but lie in bed and sleep. I know that this sounds almost impossible to do, but when you have a concussion, you really don’t feel well enough to do those things anyway, so for me, it was not as hard as it seems. I can say that the brain rest did provide me with a good foundation for my recovery, and to this day, when my symptoms become a bit too much for me, I take some time to rest and recharge my brain.

 2. Eating habits – Another recovery tool that was very helpful in clearing the fogginess that I had been feeling was to change my eating habits. When I was able to start reading, I asked my mom to buy me a book called “The Lean,” by Kathy Freston. I read a chapter each day, because I would become more symptomatic as I read, but I decided to change one eating habit daily, and before I knew it, I was eating things like broccoli, sweet potatoes, pumpkin, nuts and seeds, tofu, salmon and beans. I cut out all sugar, processed and fried foods, meat and poultry. In addition, I started to drink a lot of water each day. I noticed that after about a month, not only had I lost some weight, but my general fogginess had cleared by about 90%. I also just felt so much better, so I continue to eat this way.

3. Find a hobby – Once I had finished my three months of brain rest, I was anxious to do something – anything that I could do without exacerbating my symptoms. Since I still was suffering terribly from all of my symptoms, finding something that I actually could do was quite a challenge. Again, I asked my mom if I could help her in the kitchen. I really was not a fan of cooking, but there wasn’t much else I could do that didn’t require too much of me physically or mentally. So, that became my new hobby – helping my mom cook dinner every night. While I’m still not a fan of cooking, I did feel proud when each meal was done. I recommend finding some sort of hobby to fill the time and give a sense of accomplishment.

4. Find support – Finding other teenagers who were also recovering from severe concussions was another useful tool for me. It was not an easy task, but I managed to find several others like me, who had missed a good amount of school and were still at home recovering. We were able to commiserate with each other about how we were feeling, things we would do to pass the time, and how no one could possibly understand what we were going through unless they were going through it themselves. I am happy to say that I have made some very good friends in the US and Canada, and we continue to provide each other with friendship and support.

5. Education – My last recovery tool that I found very important was education. I was so confused about all the different things that I was feeling – headaches, sharp shooting pains all over my head, fogginess, ringing in my ears, light and noise sensitivity, balance problems, memory loss and so many other things – that I had to learn about what was happening to me. When I was up to it, I would read whatever I could, and talk to whomever I could, about what a brain injury was all about, and what recovery from brain injury would entail, so that I could give myself the best chance for recovery.

Recovery from a brain injury is a long and difficult process, but if you arm yourself with some helpful tools, and explore various treatment options, you will find that although extremely slow, there can be some relief.

The Brain Injury Association of Massachusetts provides support services to brain injury survivors and their families, offers programs to prevent brain injuries, educates the public on the risks and impact of brain injury, and advocates for legislation and improved community services.

For a listing of all support groups sponsored by the Brain Injury Association of Massachusetts, call the Information and Resources Department at (508) 475-0032 or visit our website.

To see other BIA-MA Blogs go to  “An Instant Can Change Your Life Forever”

Finding Support: Join a BIA-MA Group

This month we are featuring four blogs from the Brain Injury Association of Massachusetts, a valued member of our Massachusetts Network of Information Providers.

The Brain Injury Association of Massachusetts provides support services to brain injury survivors and their families.  It also offers programs to prevent brain injuries, education on the risks and impact of brain injury, and legislative advocacy for improved community services.

Support Group at BIA-MA
Photo courtesy of biama.org

Today’s blog was written by Sandra Madden, brain injury survivor and administrative assistant at the Brain Injury Association of Massachusetts, dated March 29, 2013

When I was diagnosed with Post-Concussive Syndrome, I did not understand what a traumatic brain injury was, let alone understand what a support group was. Then, it was suggested that I attend a support group meeting with a group called BABIS (Boston Acquired Brain Injury Support Group) – I wish to this day I could remember who suggested this to me, as I would bestow a very big hug upon this wonderful person. At BABIS, I felt understood, in ways my family and friends could never understand, and I felt a sense of appreciation for all that I still had, despite my brain injury.

I have found many benefits in joining a support group – there is a sense of belonging when a sense of isolation can be so dominant, long-lasting friendships are formed, and coping skills and other valuable lessons are learned. Even on the simplest level, being surrounded by others like you provides a sense of calm and belonging.

The Brain Injury Association of Massachusetts (BIA-MA) has over 33 support groups in the state of Massachusetts and these support groups serve survivors, family members and caregivers of all ages. The purpose of BIA-MA ‘s support groups is to provide support, information and social recreation opportunities. However, according to Barbara Webster, the Support Group Leader Liaison for BIA-MA , “The most important function a support group provides, the most important value, is finding out you are not alone.”

These support groups are both large and small, and the size of the group can drive the focus. Small to medium groups can address individual needs and issues while larger groups host speakers such as doctors and authors. “There are so many needs in the groups, trying to adjust and adapt, be understanding and be patient, yet meet everyone’s needs” is the focus of all support groups, says Barbara.

If you are newly diagnosed or have been living with a brain injury for some time, and you have yet to seek out a support group, I would urge you to consider contacting the Brain Injury Association of Massachusetts for a listing of the support groups in our state. I believe you will experience a sense of belonging and understanding, and if you are fortunate, you may make some friends along the way.

To see other BIA-MA Blogs go to “An Instant Can Change Your Life Forever” at https://braininjuryma.wordpress.com . The blogs offer inspirational personal stories, information & tips for caregivers and survivors.

For a listing of all support groups sponsored by the Brain Injury Association of Massachusetts, call the Information and Resources Department at (508) 475-0032 or visit our website.