My husband, Michael Schacker's, Speech Recovery Story
On April 2nd of this year, my worst nightmare happened. My husband, Michael, suffered a major aortic dissection and massive stroke. A genetic flaw, it happened out of the blue. This kind of cardiovascular accident or CVA is 100% fatal without an extremely high risk operation. He lived through the operation, but had a massive left-hemisphere stroke as a result.
I remember it was 12 hours before I was finally allowed to see him. He was unconscious and on life support with an artificial lung machine breathing for him. He looked positively dead. I started working with my Sensory Trigger Method right away--and surprisingly, when I explained what I was doing to the staff there at Albany Medical Center, they had no objections and let me do anything I wanted with him. When I finally left the hospital to go home, I had not slept for 48 hours.
Days later, I met with one of the several neurologists on his "team". Looking at the CAT scan my heart sank. I knew what I was looking at. The area of damage on the left side was at least 15 to 20 times the area it would have taken to completely wipe out all speech. When the neurologist said there would be no possibility of speech recovery, I had to fight hard not to believe him. I thought, "Maybe my husband is going to be one of those I can't help". But I had made the first breakthrough with my father in 1972 and with many other "hopeless cases" so I decided that it was going to be up to me to do what I know how to do--to surrender to it, believe in it and devote myself to doing everything I knew could help him.
This is the beginning of a long journey...and I have waited until now to post about it because I had to be sure--I had to be sure that I could do it. And now I am very happy and proud to report that we have made a breakthrough with him. Michael IS recovering his speech!
How cruelly ironic life can be! The time period from April 2nd to about mid-July was a nightmare punctuated with moments of deep love, sparks of life and signs of hope. It has been the most difficult challenge of my life and probably will continue to be so. The heartbreak one feels when it happens to your husband, the one closest to you, is beyond even the devastation I felt as a teenager when it happened to my father. The grief and the stress are almost unbearable. The support of my family and friends and community are truly what got me through it and I say this with deep gratitude and heart felt thanks for the amazing love and enormous support we all have received out of this tragedy. We are all very blessed.
I cannot tell all the details here, but I will say that shortly after Michael was moved to North East Center for Special Care, Traumatic Brain Injury and Neurological Recovery Center, on August 1st, that I have been able to work with him enough to make a difference.
By the time he reached North East, we knew that he not only did he have severe aphasia he had apraxia as well. Anyone who knows what apraxia is knows that very little is understood about it. It is an extremely difficult speech disorder that usually does not respond to regular speech therapy. I have to add that I was not able to do much of anything with my method while Michael was in Sunnyview Rehab Center in Schenectady. It was a 4 hour drive round trip and we were usually too exhausted to do much more than hold each other.
His lungs stopped working in the 7-hour surgery when his body was completely packed in ice and both the heart and lungs had to be completely shut down in order to put in an artificial aorta to save his life. Schenectady was the only rehab center to have both the lung and brain rehab. He had to go through extensive lung rehab to relearn how to breathe before going into brain rehab.
At Sunnyview, from May 1st to August 1st, he recovered very little from regular speech therapy. I was not able to do my Sensory Trigger Method (STM) with him. Michael was too weak, there were too many other life-threatening problems and the 90 mile drive from our home to the Rehab Center made my time very limited with him. Yet, after being moved to North East Center in Lake Katrine, New York all this changed. After about a week and a half of me being able to work with him almost everyday with the Sensory Trigger Method in a quiet private room, he was able to say 4 clear short sentences spontaneously--completely on his own.
This was a profound breakthrough--coming far earlier than even I would have expected.
Now at this point, he says new words everyday and new sentences almost everyday. For example, he said "I have a problem" to a nurse just the other day.
But Michael also has another kind of apraxia. He has motor apraxia in his left hand, so this makes the Sensory Trigger Method more difficult for him. It also means he cannot write or use a keyboard yet. I am finding ways to adapt the method to this type of apraxia and it is working! I plan to write about these new techniques and add them to our Speech Practice guides and Kits. We have started with the tracing sheets and with using hand gestures and touch when he tries to talk. Fortunately Michael can read and understand speech quite well and word from the field has indicated that The Sensory Trigger Method does work with apraxia.
I am using his ability to read and understand as a jumping off point. We practice reading his newly published book out loud together--with him holding the book in his left hand (I hold the other side with my right hand) He does amazingly well at this. It encourages him so much and gives him hope and so it is really motivating for him. (See: "A Spring Without Bees, how colony collapse disorder has endangered our food supply")
We are also now jumping ahead as rapidly as possible, using the Lefty's Conversation Pieces "touch" cards. It is not surprising that his favorite one is "I can talk". (See Video Clip) I have been able to get him to say "I love you" over the phone (he can't see my mouth that way) by saying it in a rather melodic way--not really singing it, just saying it very expressively in a predictable melodic lilting tone. He can now say that in different inflections--over the phone without seeing my mouth. We will be using other parts of my kit as I am able to get it set up for him and adapt it to his particular kinds of challenges.
These are huge breakthroughs! According to that CAT scan and the neurologist who analyzed it, he is someone who would never regain his speech.
He has a long way to go--but there is no doubt about it--the Sensory Trigger Method works!
Had a great visit with Michael yesterday. He is now progressing everyday in his speech. We are working with the keyboard to overcome the apraxia in his left hand and that is coming right along too. He is a writer and is so anxious to be able to write again. We have been working in earnest on the 1000 most frequently used words, starting with the three letter words. A few days ago we got through the rest of the 3 letter words on the Core Words list--saying 81 words in one sitting. He will now be tracing those words on his own and practicing those words vocally and with the keyboard to imprint these words into verbal motor memory. While we are working on these words some very significant and big words have been "triggered": salary, random, and even "regenerate"! These words seem to come back in "random " fashion but they are words that he is thinking about or has been thinking about and the sensory trigger technique is starting to access these words or reconnect them and getting them out through the verbal motor channel. He is able to respond with "I am fine" to the question "How are you?" He can do this even over the phone when he is not picking up visual cues from me. He has said "Gotta go now" and today he excitedly said "language" to me on the phone.
Spontaneous words are more and more frequent and he is moving slowly out of repeating the word "read" or "read books" for everything. Short spontaneous sentences are also coming back at a rate of several new ones per week, however at this stage, he often says them only once and then needs to be prompted to use them again in a new context. It is a good thing I am there to do this--reinforcement is absolutely essential. He has started to use the Sensory Trigger Finger Tapping technique with success. He prefers to press his fingers together as if he has "grasped" the word and is holding on to the word so he can say it. I noted that others have reported using the technique differently...one man with moderate aphasia likes to "snap his fingers" to access the word when he gets stuck. I am finding that the techniques works with the right or left hand if the right hand is "able". This is a flexible technique and I am learning how to refine it. Michael used it to say "Pyron" a solar company he was helping to get off the ground that he is concerned about.
We were especially delighted to see him walk with very little assistance and with much greater stability and strength. He was able to rise from his chair with minimal stabilizing assistance and walked the whole hallway, pivoted and turned around, walking again and then stopping to lower himself into a regular chair and rest briefly. He then rose again to standing position with very little balancing assistance and walked back to his room. At one point, when asked if he wanted to sit or walk, he responded saying, "I walk"--using the sentence spontaneously--one we had practiced with "propositional technique" only 6 or 7 times. I believe the reason it only took a few times is because the new pathways are becoming stronger through all the different ways that the Sensory Trigger is being reinforced--all the therapies he is getting here combined have an interactive and combined effect. Our daughter, Melissa, was there and she was especially heartened to see his walking. Tremendous progress has been made since I last posted a report here. He really IS "regenerating"!
Michael is now on a different level. It took me a long time to get a computer into the Rehab Center and all the technical details worked out, but I finally was able to get the "Let's Talk" program and the Speech Tree program set up in his room. Because I had worked with him so much with the Sensory Trigger Method, he has many more new pathways in his brain for speech.
He is making great progress with it and has started to be able to do it himself--independently when I am not there. He still needs me to be there and to follow up at least 3 times a week to reinforce it and correct some of his errors. I am not afraid of him making mistakes, however. From my experience, mistakes are good. The brain has a strong inherit tendency to adapt and correct itself. From my experience I know that this is just a part of the process--and a very important stage in speech recovery. Bill Connors, SLP, Head of the Pittsburgh Aphasia Treatment, Research and Education Center agrees. He told Michael, "Never be afraid to make mistakes in speech. We like mistakes. Mistakes are GOOD. Mistakes tell us what we need to work on."
I use the program as a tool only. We don't want people to become too dependent on the computer or using the computer as a substitute for social interaction and building conversation. Another thing I have done with Michael is to practice "simulated conversations" and now Michael can answer "How are you?" over the phone, with "I am fine!" In addition, we practice typing and writing the words and applying the words to daily life whenever we can.
Please watch Video clip 3.
Michael has been saying sentences spontaneously. Last week he said "I have a problem.", "I am frustrated", and even "Free the Genie!" I was able to make a video tape of one a sentence that I put into a video to promote his book, "A Spring Without Bees, how colony collapse disorder has endangered our food supply". He had the CVA and stroke just after finishing it. I am so proud of him in this video.
Please watch Video Clip 4.
8-1-09 Over the past months Michael has continued to progress slowly but steadily. Michael now says many more words and sentences spontaneously. He usually says at least one new word every time I see him. Most of these are not words that we have practiced, but actual spontaneous new words. He still is still in the level of severe aphasia and apraxia. He has a severe problem with saying no when he means yes. We are working on "yes/no" questions. We have started working on changing the pronouns in a short sentence with familiar verbs and conjugating the verbs. Bill Connors, CCC-SLP, has provided the technique and protocols for working with him on this. He has the best methods for breakthrough the barriers to more complex speech patterns--to go from single concrete words or phrases to abstract words and verbs in short sentences. This is an excellent example of how caregivers can work with speech therapists and how the Sensory Trigger Method can be combined with speech therapy.
In physical progress, he is now walking from the car to the doorway of the doctor's office instead of having to transfer to his wheelchair and wheel himself around all the time. He can then sit in a regular chair and walk back out to the car near the entrance--huge progress in walking! I have had great difficulty being able to get to the Center to work with him every other day as I recommend in the guide. Sometimes I get there and both of us are too tired to work on speech. However, now I am using web cam to work with him over the Internet with Skype. This is an amazing way to talk together, stay in touch and work on his speech even when I can't be there. The family has set up web cams and Skype on their computers and so he can now talk with his family in other parts of the country through video calls! Skype video calls have really improved his quality of life--and ours for that matter. Skype is free. For more information visit Skype.com.
About 3 months ago I composed and set up several sentence practice programs for Michael to work with on his own using the Natural Reader text to voice technology on his computer. Michael now says at least one new sentence every time I see him. He now attempts even 5 syllable words. The sentences are generally getting longer and more interesting and meaningful. On our way back to the Center from his last home visit he looked over at me and said. "I want to go home." It is hard for him to understand why I can't just take him out of rehab and bring him home--why he, in fact, must recover more in order to leave institutionalized care. After talking about this he said, "You are my one and only." Then a little later he mused, "Our Time is Powerful."
He walks more now, but tires after several hours of being out. He also had a few seizures in the last 3 months and is now on two seizure medications. We don't know why he has had more of them lately. Like most spouses who work and deal with the financial problems of a major medical disaster, I have trouble getting enough time working with Michael on his speech. Fortunately, I have been able to set up new sentence making practice exercises that he can work independently on the computer. He now works so much on his own that he continues to progress and the Sensory Trigger is an automatic and natural part of his communications. Because these new sentence practice exercises have been so successful with Michael, I plan to use the sentence programs he has been working on to someday make new programs for Stroke Family.
Look at how far Michael has come over the past months in these amazing video clips
Since the last post, Michael has being doing LENS neurofeedback treatments with Dr. Stephen Larsen at Stone Mountain Center, in New Paltz, New York. You must see the progress he has made! Go to the pages to see this series of video clips.
Michael continues to use Sensory Trigger techniques and recovers new words and sentences everyday. He is currently working on getting his writing back. In fact, he has recovered to the point that he can move out of the Northeast Center for Special Care and go on the TBI Waiver program. This program subsidizes rent and provides caregivers and many other services so that he can learn independent living skills and return to his community.
The future now looks bright and full of possibilities. Over 4 years since his stroke, Michael has recovered dramatically. He continues to work everyday to recover his mobility, his speech and his writing. Just as important, Michael has never lost his spirit and he actively engages with life--always pushing himself to succeed. With the help of his wife, Barbara, and his close friends, he has found a way to continue his work as a writer and realize his dreams. His second book,Global Awakening, New Science and the 21st Century Enlightenment is being published by Inner Traditions, January 1, 2013--quite an accomplishment for a man with only "half a brain" as Dr.Larsen says.
The recovery of the past 3 years has been a combination of daily Sensory Trigger based speech practice (that he does mainly independently) along with writing on computer using a text to voice reader to help verify his speech and writing work. Michael has been receiving LENS neurofeedback and other neurological treatments by Dr. Stephen Larsen at Stone Mountain Center for 3 years now. The Sensory Trigger Method and LENS neurofeedback are very complimentary to each other and work well together.
Brain maps made by Dr. Larsen have shown slow but steady recovery. Right side speech areas showed increased activity early on and these areas remain highly active. But the maps are now showing more and more recovery in the massive areas that were completely destroyed in the left hemisphere, (Michael had some damage on the right as well as the left!). It's showing the right hemisphere has now made at least some connection to the left side. There is now a connection going in a straight line from the corpus collasum (the bridge between the left and right brain) to the left side. This is about mid-way between the Broca's speech center and Wernike's speech centers. The area of left brain activity is slowly spreading, but it is not showing activity in the left hemisphere speech centers (Broca's and Wernicke) which were completely wiped out by the stroke---at least not yet.
Both the Sensory Trigger Method and the LENS treatments are working to create a connection that is able to pull speech and information from the cortex and other areas on the left. In other words, the right speech center seems to be routing around the damage and linking up more and more with whatever is being recovered on the left side. This is something I had maintained was happening with the Sensory Trigger but now with this new technology we are able to actually see it happening.
Dr. Larsen gives detailed information about how this type of therapy has helped Michael's recovery in his new book: The Neurofeedback Solution.
I must add here that there were times when Michael was not able to work on his speech but continued with LENS. During these times, I observed that the LENS therapy produced cognitive and mobility recovery, but speech leveled out. It was only after Michael was able to return to STM speech practice that his speech again made steady progress. In other words, LENS therapy does not in itself result in speech recovery--it doesn't replace or supercede Sensory Trigger speech practice. The basic truth is the brain structures can recover, but the brain has to be exercised or forced to reorganize, and that is what STM does. Without the structural recovery provided by LENS, the brain has less to work with and remains limited, and this limits how much STM can accomplish. So here we have a winning combination.
There is one more essential element in this success story, to this winning combination. That is LOVE. Without love, nothing you do will work. Love is the greatest healing power on Earth.
Michael has been steadily recovering his speech using the Sensory Trigger Method over the past 4 and 1/2 years. This is what our former doctor who had not seen Michael Schacker in over 2 years said to us when he saw him again:
"It is exciting to see the amazing linguistic skills!! Michael, you are a conversationalist again!" --John Dubberstein, M.D.
5 years post-stroke, Michael continues to recover his speech. He is now working with the advanced level with our new Speech Bridge program to recover his speech and writing. With his own manuscripts for sentence practice, he is using more advanced Sensory Trigger Methods (highlighting the words for adding voice feedback and hand writing).
In addition to Sensory Trigger speech practice, we added three new therapies. First, a new form of neurofeedback treatment called Neurogen, with Dr. Stephen Larsen at Stone Mountain Center in New Paltz, NY; second, singing therapy with Rick Shosenski at the Creative Arts Therapy Center in Kingston, NY and third, Chinese scalp acupuncture wit Dr. Chen Yong at Stone Flower Mountain, in West Hurley, NY. The addition of these therapies to Sensory Trigger work caused a big leap in his cognitive and physical recovery this summer and fall. We might add that there seems to be no substitute for daily speech and language practice. During times when this lapsed, he basically stayed at the same level and sometimes even slipped back a little. It is also possible that his focus on getting his writing back caused a pause in his speech progress. This points out the importance of continuing daily speech practice and exercises as an on-going endeavor.
In November of this year, he participated for the first time in a book talk about his second published book, Global Awakening, New Science and the 21st Century Enlightenment. published in January 2013 by Inner Traditions. Over this past year he researched and authored a new book, "The Bees are Dying" - available soon on Kindle at Amazon.com. He is now able to say spontaneous conversational 6 - 8 word sentences with remarkable sophistication and ever more frequency and clarity. We've been so focused on all of this, we have yet to catch this on video.
View Michael's Speech Tree Breakthough on the very first time using the program at the starter level. Michael has motor apraxia in his left hand. Writing is very difficult for him. His writing is still far behind his speech, but he has improved greatly since starting with Speech Tree. Click Here.
Michael's second book is published. Michael now uses the Natural Reader text-to-voice to practice for sentence practice. He uses the manuscripts from his book, highlighting the text (which serves as the Sensory Trigger touch signal) and hearing the voice and then making the attempt to say the whole sentence. This is what he has chosen to do himself--even though the reading level of his books is at college level. He is doing surprisingly well with this. He has been researching on his own over past 2 years on the Internet and is working on a new ebook, "The BEES are DYING". At first he needed help to put this together, but he quickly learned what to do and continued on his own. I added a little bit of information at the end and put the book into a pdf format. This is a testament to the continued recovery that is possible using the Sensory Trigger Method and his determination to recover not only his speech but his writing. The book is available for sale at the Global Regeneration Network
I have been having great success with a new Sensory Trigger technique that I discovered while I was working with Michael. I have been very successful with teaching how to do this over the phone or Skype when I do my consulting. One person was so frustrated with speech therapy, he wanted to quit, but said his first words in the first training session with me. They bought the whole kit and are working everyday with it. I encouraged them to keep going with the speech therapy, and assured them that this does not interfere with speech therapy and there have been many reports of therapy suddenly having positive results after making progress with STM. His wife decided not to tell the speech therapist what they were doing because the therapist basically blamed him for not responding and being uncooperative. She also was vocally negative about his progress. His wife was afraid she would discourage them from doing something new. After a couple of weeks he was suddently responding to speech therapy. His therapist remarked, "You must be working very hard on your speech at home, because you are doing so much better! Whatever you're doing it's working so keep it up. Do you think you are doing better?" and he smiled and replied nonchalantly, "It's coming!" (I left it up to the spouse to decide when to tell the therapist.) This person is progressing both at home and in speech therapy.
Another person, who was a "brain worker" (a brain plasticity consultant) asked me if I could do something with her client on the spot. I said, "Sure." I explained to the consultant how to do the Sensory Trigger technique. Then I explained to him that this might not work right away--that it might take practice, but not to worry if it was not perfect this first time. I then told him, "I think you can do it--so let's try it." (I always tell them that I believe they can do it before I start.) First, I had him say all the vowel sounds along with me and the therapist. Then I had him say 3 one syllable words that had 3 of the vowel sounds he just said. They were really amazed by this. Then I said, "So now we're going to say a sentence." There was silence on the other end of the phone--he had not been able to initiate words before, let alone a sentence! We said the words together while the therapist did the technique-- one at a time in sequence. Then I said, "Now you say it on your own". He said, "I love you." Both of them gasped! "You just said a sentence!" I said and we all laughed and choked up. (I was expecting to have to work on it more before he’d be able to say the sentence and was ready to do that.) I was elated for a week and still very happy about this particular breakthrough, because it was a breakthrough for me as well. It was a reaffirmation that speech can be triggered through the right hemisphere and that this is so simple that someone can easily learn it through my programs and even over the phone. It is a breakthrough for Michael too. He’s my team mate again, helping so many people with his willingness to try new things and to push through to the next level. This is why I do this work!
Michael Schacker passed away on October 30th of a massive coronary. We are grateful to have these six and half years of life with Michael. He recovered more than anyone would have imagined and achieved so much during this time! Unbelievably, he was working and loving life right up to the last day. Though we knew that this could happen, there certainly weren't any signs that he would be leaving soon. Our hearts are broken and he is deeply missed and will be dearly remembered.
He was always positive and determined not to let his traumatic brain injury keep him from making a difference in this world. He worked every single day to recover and his recovery story will remain...extraordinary!