Normally, this blog is about my recovery and all the things I now do TO recover. 9 years is a long time, so I will show you another reason I am happy to be alive: I can’t believe I am so in love with my granddaughter. She is truly the best thing in the world! As I was pushing her, I thought I heard her voice say “higher!” Maybe next time….
Wow…I don’t believe it. I posted that Jill will be speaking on April 26, and EVERYONE that logged into my Blog to read more about it. When I wrote my last post about me having reading challenges, hardly anyone logged on to read it!
I don’t understand it. Sure, Jill was there to help me through my recovery. She help me re-learn EVERYTHING, she walked with me, she cared for our two beautiful children, she took care of all the bills, she took care of the house, she shopped for the groceries, she took me out driving so she could re-acquaint me with Lake Oswego, she helped the children with their homework, she listened to our kids complain about me, she cooked delicious meals EVERY NIGHT, she said prayers EVERY night, etc. But thats it. I did everything else: I sat around having people wait on me.
Now I feel dumb; I guess she WAS fantastic! OK, sure…come see Jill speak about HOW she handled this crises with grace, faith and with love.
Now, can I talk about me? If you didn’t read my LAST post, please continue…
I still struggle. Let’s see if I can explain it.
I recently read the birthday cards I received. They were very funny to everyone in the room. But when I read them out loud, I had to concentrate on every word. Unfortunately, I didn’t know what I was reading, but people laughed.
If I read them out loud several times, I might get the humor but it would take work. It is hard to explain the disorganization in my brain. When I read, I see each word but I can’t connect them in any context. They are just a bunch of individual words.
Even now, Jill is writing this for me because I can’t do it myself. I tried to tell her what I wanted to write about but my explanation was all over the place. She asked me questions and worked with me until she understood what I am trying to explain. It is frustrating but luckily, we work well together and usually laugh as we talk things through.
Language and cognition are big hurdles. It has been 9 years and I am still trying!
David Tannenbaum, a lawyer turned startup executive, had been in chemotherapy for a brain tumor for almost a year when, in January 2015, he had two strokes that left him partly paralyzed on his right side.
After months of traditional physical therapy, and still partly paralyzed, Mr. Tannenbaum turned to a videogame for help. He used a device at NYU Langone Medical Center in which an interactive, on-screen canoe trip retrains the paralyzed hand and brain in basic movements.
New therapeutic devices for stroke recovery, made possible by advances in hardware and software, are transforming the typically low-tech world of stroke rehabilitation. Though the tools are still in the early stages, doctors say that they can be more motivating and engaging for patients than current standard therapies, and that they hold promise for stroke survivors who are too injured for traditional therapy.
“We’re entering a very exciting era,” says Dr. David Putrino, director of telemedicine at the Burke Medical Research Institute in White Plains, N.Y. “All of these new tools can really help us do our jobs much better.”
Strokes, which cause brain damage, are a major cause of death and disability in the U.S. Most survivors have some type of disability, and at least half are affected severely enough to require special care or a long-term facility.
While existing stroke therapies are useful, patients typically don’t get as much of these therapies as their doctors would like, both in the hospital and after they leave. It’s especially difficult to get patients to follow through on therapy routines in the long term, in part because the routines are often repetitive and tedious. The new methods, in contrast, are more engaging for the patients, and some can be done at home.
What’s more, while most stroke therapy works by exercising the part of the body associated with the injured portion of the brain, some of the new therapies take a different approach.
For instance, the simulated canoeing device at NYU Langone—which is undergoing clinical trials—engages both arms simultaneously in an effort to retrain the paralyzed hand and the affected portion of the brain. The design is based on research findings by its inventors that using an uninjured arm can help in retraining the injured one.
Their research suggests that both sides of the brain are involved in one arm’s movement, says Preeti Raghavan, a doctor at New York-based NYU Langone who, along with Dr. Donald Weisz, a former professor at Mount Sinai Medical Center, developed the therapeutic device through their company, Mirrored Motion Works Inc.
Mr. Tannenbaum’s experience speaks to the device’s effectiveness at getting him to stick with his therapy. “Two minutes in, you forget you’re doing exercise and you feel like you’re playing a game,” he says. Mr. Tannenbaum says that since his stroke he has regained some abilities, including the ability to walk and move his right arm up and down.
Among the newest therapeutic tools used for stroke victims, those most commercially available are robotic exoskeletons, which attach directly to the affected part of the body to facilitate or enable movement.
Robotic exoskeletons are well suited to therapy, since the support can be taken away gradually as patients improve, says Karen Nolan, a senior research scientist at the nonprofit Kessler Foundation, a West Orange, N.J., research and charitable institution for people with disabilities. Exoskeletons also may relieve physical therapists of having to manually move the patients, so they can focus on the quality of the movements instead, says Dr. Nolan.
Another approach, called telerehabilitation, aims to increase the amount of therapy stroke patients get by making supervised rehabilitation available at home—and making it fun at the same time. One system, developed by Steven Cramer, a University of California, Irvine, professor, and his team, integrates low-cost electronic videogame plug-ins, such as a Nintendo Wii remote-controlled gun. Users’ movements control the games, with remote supervision by a therapist.
“People get all freaky jazzed when they shoot the little ducky on the screen,” Dr. Cramer says. The system is in clinical trials to test its effectiveness compared with in-person physical therapy.
A canoeing videogame at NYU Langone can help stroke patients rehab a paralyzed hand.PHOTO: ANDREW NEARY/NYU LANGONE MEDICAL CENTER
Benefits of VR
Videogame technology used in stroke therapy also includes virtual-reality systems, with some that render scenes and objects in 3-D. Some games with immersive environments may offer the greatest promise to stroke patients because they address cognitive problems along with sensory and motor problems, says Dr. Mindy Levin, a professor at McGill University in Montreal and president of the International Society for Virtual Rehabilitation.
While stroke patients often have physical difficulty with such basic tasks as shopping, everyday environments such as malls can leave them feeling overwhelmed as well. A simulation developed by Israeli researcher and occupational therapist Dr. Debbie Rand, called VMall, can help reintroduce patients to such environments in a low-stakes way by capturing the patient’s image and movements and placing them in an on-screen virtual mall, where they look for items on a shopping list.
The future of these technologies likely lies in a multifaceted approach that combines exercise, therapy and medication, says Lee Schwamm, director of stroke services at Massachusetts General Hospital in Boston and a professor at Harvard Medical School.
In addition to exploring the value of videogame devices such as the Wii and Microsoft’s Kinect for rehabilitative purposes, Dr. Schwamm says he would like to see what can be achieved using more everyday consumer technology, such as Fitbits, the wearable devices that encourage users to be active by monitoring their movements and vital signs. Users also can make the data available online to compare numbers and compete with others.
Researchers are still determining how to match each patient with the technology he or she would benefit most from, depending on the nature and severity of the injury. Canadian clinical guidelines, for instance, recommend robotic exoskeletons for the shoulder and elbow but not for the wrist and hand, based on patient outcomes seen in a review of research.
There’s also a question about how insurers will cover treatments in this burgeoning field. Not all of these new products are available for patient in-home use, and some concerns remain about the effectiveness of those that are.
“If it helps, it helps, but it’s a young field,” Dr. Cramer says. “Most of these devices have yet to publish solid, well-powered, persuasive clinical studies that establish these things do something reliably, in a consistent way.”
It’s possible that using all the new approaches together could provide maximal effect, says Leonardo Cohen, chief of neuroplasticity and neurorehabilitation at the National Institute of Neurological Disorders and Stroke at the National Institutes of Health.
“It’s conceivable, if each of them improves learning by 5%, maybe when one administers them all together, it has an additive effect,” Dr. Cohen says. “I don’t know that, but it would be interesting to explore.”
I had a stroke almost 8 years ago. Can you believe it?
As I think back, I marvel with how far I have come. Of course, I am not where I WANT to be! That is normal…right? When I look at pictures of me in the hospital, I think about all the people who visited me during that time and I am grateful to all of you who visited me during those tough times.
I said it best in my talk:
After the stroke…
You might think those first few days after the stroke were tough, but they were EASY compared to the next 3 weeks at Rehab. I was completely dependent upon others for all my needs… but really…. all I wanted to do was just sleep. But they don’t let you “just sleep” at Rehab. Recovery is the total focus. Goals, instruction, repetition and discipline. These were the elements I had to embrace if I ever wanted to get up and get out of my wheelchair, and if I ever wanted to speak again. That was my Everest, that was my Olympic medal — to get up…and walk and talk and think and function like the person I had been only a few days before.
It was so hard. I was so tired, and my brain was so scrambled – I couldn’t make sense of anything. In speech therapy, I couldn’t point to a red triangle or a green square because I couldn’t make sense of those words.
In Occupational Therapy, I watched the therapist move my arm but I felt no connection to it. In physical therapy, I couldn’t move my right leg because my brain didn’t recognize those muscles anymore. My whole right side slumped and sagged, forgotten by my damaged brain like a virus that has been deleted from a computer. Everything I did or tried to do required all my attention.
How am I now?
My right side is at 90%. I still can’t write, but that is my next goal.
Golf is coming back…slowly
I am still TRYING to get back to work. That is more difficult than I ever imagined!
But why am I happy???
I walk 10,000 steps per day; I have peaked at 16,000 steps per day!
I love my wife…even after 25 years together
I wake up and thank God I am still alive …and I truly look forward to the day ahead of me
I can look at how I am now….or I can look at why I am happy just to be here. I am choosing number #2: why I am happy just to be here.
Regarding #1: I will eventually get there; it just takes time. Who knows: When I do this again in another 8 years, I may be cured! I am banking on it!
Come Back Strong is a national movement centered on the blue return symbol for stroke recovery, hope, and survivorship. THERE ARE MORE THAN 6 MILLION STROKE SURVIVORS living in the United States today—a number projected to increase to 10 million by 2030. Come Back Strong is the first-ever movement to spark change for the stroke community.
With your support, we will ignite a nationwide conversation to help others learn about stroke and provide support to millions of stroke survivors and their circle of support.
COME BACK STRONG IS PART OF A NATIONAL MOVEMENT
Championed by National Stroke Association, providing stroke survivors with hope after stroke so they can begin their journey to recovery and Come Back Strong. The road to recovery looks different for everyone—but there is a road and there is a recovery—and it is emotional, physical, and spiritual.
We asked and listened to stroke survivors and caregivers across the U.S. While they told us personal stories of unique challenges and conquests, there was one common thread. Stroke hits as a sudden and shocking loss that eventually gives way to hope.
COME BACK STRONG IS CENTERED ON THE VISUAL STRENGTH
The visual strength of the blue return symbol signifying the process of stroke recovery, hope and survivorship.
The return symbol is intentionally left open, reflecting the drive of survivors to return to their former self, and the opportunity that exists for a new normal.
Tim Curry arrives at The Actors Fund’s 19th Annual Tony Awards viewing party held at Skirball Cultural Center, June 7, 2015, in Los Angeles.
Nearly three years after suffering a stroke that left him wheelchair-bound, actor Tim Curry made a rare appearance on the red carpet Sunday at the 19th annual Actors Fund Tony Awards Viewing Party in Los Angeles.
The veteran Broadway and film actor received the organization’s lifetime achievement award.
“I’m doing well and I’m looking forward to it,” the 69-year-old actor told Los Angeles magazine prior to the party. “I’ve done a few benefits for the Actors Fund and I think it’s a marvelous organization. I hope not to have to use it.”
The Actors Fund is a social services organization that supports professional entertainers.
While recovering from his stroke, Curry has relied on his sense of humor, which he called “absolutely vital.”
“It’s not tough to maintain,” he told the magazine. “It is just part of my DNA.”
Curry’s storied career on Broadway includes roles in “Spamalot,” “My Favorite Year” and “Travesties,” as well as his iconic turn on stage and screen as Frank ‘n’ Furter in “The Rocky Horror Picture Show.”
The star said he looks back on the role “with a sort of bemused tolerance.”
“It’s neither a blessing nor a curse. I was lucky to get it,” he told the magazine.
He’s also grateful to be recognized for his lifetime of work.
“It means that it just sort of solidifies the kind of work the American acting community has given me for years now,” he said. “I was thrilled when they told me and I am thrilled now.”
This appeared on the National Stroke Association site last week. Check it out!
I am … A Survivor
I was a family man trying to do things right — work hard, provide for my family, follow Christian values. Yet on my 51st birthday, I suffered a massive stroke that nearly killed me and left me with serious impairments. I went from being a healthy, active, no-risk-factor man to being half paralyzed, unable to speak, organize my thoughts, or remember.
The experience has been a true test of faith and perseverance. My wife Jill, and I have worked together in my recovery, facing each obstacle as a challenge to be overcome. Nothing has come back quickly or easily, but we continue to work as a team and hope for the best.
We are now 7 years post-stroke and have surpassed all expectations given with the severity of my stroke. I am certainly not fully recovered so mine is not an “I did it and you can too” story. My journey of recovery is still in progress and will likely be a lifetime pursuit.
Everyone needs encouragement and perspective from time-to-time. We now speak publicly about our stroke and recovery experience and how it has affected our lives, our marriage, our kids, and our faith. My hope is to inspire people and help them see that good things can happen, even when it doesn’t seem possible. Even more importantly, I hope people will see how the Good Lord has been faithful to His word, providing for us and carrying us when we were too devastated to carry ourselves.
Being married to an entrepreneur is a rollercoaster ride of extreme highs and lows but my husband Gordon’s stroke was a low I could not have imagined. Pre-stroke, he had been so sharp and competent. In a moment, he had become severely disabled, childlike, and disconnected from reality. He had no idea how bad he was and for him, that was probably a blessing. His entrepreneurial drive and determination were still intact and he never even considered not recovering fully.
I, on the other hand, understood fully the magnitude of his brain injury and I could imagine what our future might look like. It was a lonely place to be: I couldn’t cry and lament in front of Gordon or the kids. Gordon needed to believe everything was ok—he needed that positive attitude. The kids needed me to reassure them and to make them feel as safe as possible. They were dealing with huge changes to their lives too. I had to be the grown-up.
The sadness and loss stayed with me for probably 4 years. Gordon tried very hard to go back to work as a consultant but he couldn’t do anything without me, so I became a consultant with him. For 2 years he tried to be a consultant again and I had to watch him be unable to even form sentences in front of what Gordon believed were potential clients. His optimism and belief that he could do it all again was essential to ongoing recovery so I couldn’t bring him down. I had to submit to his needs, even though it was painful.
My turning point came when I embraced my powerlessness and asked God to lead me each day. Surrendering my desperate attempts to be in control freed me of the stress and worry that weighed on me. Each day became a gift—still difficult but gratitude began to tip the scale in my favor.
As we continue to fight the good fight for recovery, we speak to audiences about our journey and inspire them to face adversity with hope and faith. My experiences as caregiver, wife, and mother are chronicled in my book called “Painful Blessing.”
I wrote the book for several reasons:
There is still hope, love, and joy to be had, even after a life-changing experience.
There have been no shortcuts in recovery. We are still working on it 7 years later.
We cannot be the only people to go through such a devastating experience, even though it sure felt that way.
Our story is compelling, inspiring, and ongoing–all things I hope will help others in crisis.
Mike Lee heard so many great things about me, that he want to interview Jill and me. Unfortunately, I did not communicate with him that my verbals skills were EXTREMELY weak. He found that out after a few minutes. Luckily, Jill was able to help. I rephrase that: Jill carried the entire interview… I said maybe a couple of words. I must say, Jill was fantastic…then again, she always is! Mike said he would send me the audio file so you can listen and I hope to have next week.
Gordon and Jill Viggiano is a couple who were on the fast track in life. Gordon was a successful sales executive, consultant and entrepreneur; Jill spent 19 years working in commercial real estate before retiring to become a full time mom. All that changed when Gordon turned 51. On his 51st birthday, Gordon suffered a massive stroke with aphasia.
Gordon is now 7 years post-stroke and he is happy to report that he is getting better all the time. He is certainly not fully recovered from his stroke so this isn’t an “I did it and you can too” speech. Says Gordon: I am in the middle of my recovery and so my perspective is from “the trenches.”
In his presentation “My Brain Has A Hole In It,”he discusses this life changing experience and the lessons that have come along with it. his goal is to inspire people and help them see that good things can happen, even when one doesn’t think it is possible.
Despite his aphasia, Gordon is an inspirational and motivational speaker; You can book Gordon for speaking engagements; visit his website: www.mybrainllc.com
Gordon’s wife, Jill, focused her skills and energy on his recovery and is now assisting him in his day-to-day needs as well as in his speaking career. Jill’s book – Painful Blessing: A Story of Loss, Recovery, Hope and Faith, is about her spouse and caregiver experience, shedding light on the real life impact of acquired brain injury, and providing hope and encouragement to those facing significant challenges.