I had the pleasure of attending Stroke Camp last week in La Jolla California.
I went as a volunteer and also to promote my new book, “Highs, Lows, and Plateaus: a path to recovery from stroke.”
I can honestly say that I gained so much more than I gave! It was a weekend of laughter and camaraderie ~ a weekend of sharing and supporting ~ a weekend of gaining strength from each other. I met some amazing people and have so much respect for the stroke survivors and their loved ones who live each day with the struggles of stroke, and yet they turn those struggles into moments of inspiration and strength.
As anyone there can attest, I cry very easily. Sometimes I tell people that I have “dry eye” and that the lubricating tears are just a side effect of the disorder. Not true. I just cry easily. My daughter says it is because my heart sometimes brims over as tears. At stroke camp, I did not cry tears of sadness. Instead they were tears of release, of celebration for the strength of the human spirit.
Every day we hear about the pain and suffering and cruelty of our world. What I experienced was only love and respect. That is what we need to be shouting from the mountain tops. Not our differences, but our similarities ~ as people. From that we gain strength. Cheers to the Entire Team from “Stroke Camp”. You are everyday heroes !
2014 was a good year… now cheers to 2015!
I wanted to highlight a few successes that some of my clients had in 2014:
K. received a new dynamic ankle brace and is now walking more than ever. He reports that he can feel the muscles in his weak leg getting stronger, and he can walk over uneven ground, up /down stairs easily and finally can say that he enjoys walking again.
C. is using her fingers again! Not quite two years post stroke and she is able to use her hand to help her with all kinds of daily activities. She has returned to work full-time and has also gotten back in the routine of being “mom” in her family now. It was hard having her daughter and husband take care of the baby, but she is back. This year, is dedicated to fine motor control in those fingers!
E. became independent in transferring into the shower, is driving his own van, and is learning to walk again. Not bad for someone who is not even three years post injury to his cervical spinal cord. No need for an electric chair because he can push himself in his new lightweight chair and feels he is getting stronger (below the level of lesion) every day.
S. returned to work full time, is using her right hand for typing and is talking up a storm! She and her family have fought hard. Still a ways to go until this young woman feels satisfied with her recovery, but I have no doubt she will get there.
M. barely survived his stroke, but he is getting better every day. He can stand independently, transfer for showers and walk short distances. Mostly delayed now by distorted vision that makes it hard to move, but he is having a surgical procedure this week that hopes to improve his vision.
Just a few successes. Would love to hear from others about the Highs, Lows, and Plateaus of recovery.
Cheers to 2015!
Rehab gyms across the country, such as SciFit and ProjectWalk are changing the scope of recovery following spinal cord injury and stroke. Rather than focusing on the deficits and problems left by the injury, their focus is on the potential for neuroplasticity and learning within the human central nervous system. Movement recovery depends on a demand for use. Rehab professionals should embrace a change from speaking of the negative “incomplete” and focusing on the positive “partially complete”. This is the only way we can change the dialogue around recovery.
I would love to hear from survivors who have continued to improve and reach their goals despite a negative prediction set by many health care providers.
This morning, my daughter asked me why animals begin walking shortly after they are born but it takes years for a baby to walk? The answer is not as simple as four versus two legs. If it were, then babies would begin crawling shortly after birth! Is it about size? That cannot be right since baby elephants, giraffes, and horses are far larger. Is it about survival? Perhaps. Is it about the complexity of the human nervous system? Most likely. The desire to walk it tantamount in recovery from injury! It is the driving force for much of physical rehabilitation. This complexity of the human nervous system also gives rise to the potential for neuroplasticity.
What are your thoughts on this topic? Would love to hear from you?
It seems that each week, I hear from someone who has been told by their doctor “not to expect any further recovery.” Most recently, I heard this from a young man who had an incomplete Spinal Cord Injury only a few months ago! Such a statement by a doctor is utter non-sense, so I ask myself “Why would someone say that?”. What I have decided is that health care professionals play it safe by not promoting any form of expectation from their patients. If someone is told they will never do anything again, and then they accomplish something they are pleasantly pleased… in fact, they feel that they have beat the odds.
I think we need to let people expect more. We need to instill hope through information and education and resources. No false promises, but rather the opportunity to believe in the power of neurorecovery and the strength and resilience of the human spirit.
Well two months after meeting that young man, he has already made tremendous gains and yet the words of his doctor still haunt him. It will take a long time to diffuse the negativity of comments that are destructive to the potential of hope, handwork and neuroplasticity.
Today is World Stroke Day. It is a day dedicated to increasing awareness about stroke and the warning signs of stroke. Stroke strikes anywhere, anytime, across age, ethnicity, and socio-economic groups. I have never known anyone who planned on having a stroke.
Stroke is the result of disrupted blood flow to the brain. The more technical term is Cerebral Vascular Accident (CVA): cerebral = brain, vascular = blood flow, accident = unexpected. The more attention-catching media term is Brain Attack – much like a Heart Attack. A heart attack occurs when blood flow to the heart is interrupted and the cells that are electrical in nature stop functioning. Likewise, a brain attack occurs when the blood flow to the brain is interrupted causing the cells that are electrical in nature to stop communicating. The symptoms of the brain attack (stroke) will depend on which pathway for blood flow is interrupted and thus the corresponding region of cells whose communication is compromised.
I graduated with my bachelors’ degree in Physical Therapy in 1985. At that time, there was not a lot that could be done in regards to the emergency treatment of stroke. By the time I earned my doctoral degree in Neuroscience and Physiology in 1995 progress was in the making. In February 1996, a clot-busting medication was approved, by the Federal Drug Administration, for the emergency treatment of stroke.
Advances in imaging and drug delivery have helped to lengthen the treatment window for using tPA. Clot-retrieval devices that mechanically reach into a blood vessel to remove the clot have recently come onto the treatment scene and have lengthened the treatment time window. Surgical advances have also been made in the treatment of hemorrhagic stroke.
In 2003, the Joint Commission, a nonprofit organization that accredits and certifies healthcare organizations, joined forces with the American Heart Association and American Stroke Association (AHA/ASA) to begin certification of Primary Stroke Centers (http://www.strokeassociation.org). These centers are certified to provide for emergency treatment of stroke. More than 900 hospitals nationwide have been certified. It may be worth knowing which hospitals in your area are certified.
In 2012 this accreditation process was expanded and the Joint Commission together with AHA/ASA began certification of comprehensive stroke centers. These centers are even more specialized having advanced treatment and surgical tools for the emergency management of stroke.
With more awareness, better treatment and improved follow-up rehabilitation, we can reduce the devastation caused by stroke.
Why is the ankle so difficult to recover function after a stroke? There are a lot of reasons that circle around the neurological control of the ankle, the complexity of the ankle joint, and problems with sensory awareness after stroke. If you think about it, it is pretty cool that a foot and skinny little ankle can support our entire body all day long!
So, I really do not like the plastic molded ankle joints that so many people are sent home with! They make NO sense to me. They are rigid, have no energy storage, block sensory signals from the foot, block the natural motion of the foot bones and they are just plain ugly. I think it is time we all start demanding that stroke survivors be fit with dynamic, energy storing ankle braces.
There are a lot available, but here are the four I have worked with just this week and have been very pleased with how well they work in not only providing support to the ankle, but providing for a dynamic, energy-storing system that actually helps one learn to walk again.
Please note that this information is provided for educational purposes and does NOT provide endorsement of any particular device.
The rigid AFO serves a purpose early in rehabilitation following stroke. It provides stability to the weak leg, allowing people to safely stand and transfer. This rigid AFO, however, is NOT the ankle brace that should be used when one is learning how to walk again. It is time to start demanding that ankle orthosis be made so that a hinged ankle and some form of dorsiflexion assistance can be added once the survivor is ready to learn to walk. Using a rigid ankle brace almost demands that the person learn to walk with a stiff leg, that is thrown forward with hip hike and circumduction. One cannot bend the knee for walking if the ankle is fixed! Simple biomechanics. So, how do we change the way Therapists, Physicians, and Orthotists approach the ankle??
I am not a speech therapist and have no real training in speech therapy… and yet I think about speech rehab all the time. I see clients who post one year have not yet regained their speech following a stroke and I wonder if maybe the wrong approach is being taken. Instead of trying to “regain” speech, maybe they need to learn speech again. Like learning a foreign language! Building new speech centers in the brain! I have had several clients tell me that they benefited from foreign language tapes and from programs like Rosetta Stone. The language they “learned” was English. Yep, just as if it was a foreign language.
I would love to hear what others have done for their speech therapy and recovery. The more we share with each other, the more empowered all stroke survivors will be.