OT Creative Pathways towards Recovery
Nothing is easy.
You need a framework.
A compass. -AJ Ptak
Occupational Therapy (OT) can be monotonous.
The Saebo glove™ opens a virtual doorway to a new
headspace of rehabilitation and extends beyond the realm
of physical dexterity into the neurological rewiring of the
brain. I used the glove with an occupational therapist over three months.
6 Ways to Work with your Occupational Therapist OT:
I. Slow and steady wins the race. ✔
II. Consistency. ✔
III. Patience. ✔
IV. Focus. ✔
V. Determination. ✔
VI. Attention. ✔
No plateaus, because when you reach an impasse, find
another way. The Saebo glove is a new path and I’m
locked in to my coordinates, moving forward onwards and
upwards. In early 2011, I was diagnosed with CNS Lymphoma a rare form of Brain Cancer that attacks the Central Nervous System and caused cells to die in the central part of my brain, the region called the Thalamus and extending into the subthalamic region called basal ganglia into the brain stem, and to a lesser extent putting pressure on the ocular nerve.
The result of this occurrence in my body is characterized as TBI, otherwise known as Traumatic Brain Injury (TBI.) Soon after my cancer diagnosis was confirmed via multiple MRI scans of my brain at NYU Medical Center, I had a surgical brain biopsy. A hole was drilled into my skull to identify the type of tumor cells for targeted chemotherapy of which I had 19 cycles over many months intravenously, in addition an anti-inflammatory steroid and immunity boosters were administered, a drain device was installed in my skull to relieve the brain fluid pressure from the injury. I was asked many questions by my physicians during this process including, “Anthony, are you hallucinating?” Half joking, and totally serious in tone, I responded,
“Doctor, isn’t all of this an hallucination?”
I meant to convey the unfamiliar circumstances I found myself in. Left side weakness in my arms and legs. I could not pick anything up because my fingers did not work, I was confined to a bed, eventually working my way up to wheelchair then cane over many months and now years of Physical and Occupational Therapies, even while in the hospital between chemotherapy infusions, periodic MRI scans, and a near fatal bought with Pneumonia
when my white blood cell count dropped dramatically, interrupting my treatment. You begin to recognize rather abruptly that you are in that place where no one is truly sure of your prognosis, the subclass of the terminally ill. No one wants to tell you the immense forces you are up against, especially when your own body becomes an enemy of you, and all your sensory input is offset by changes in sensitivity in your hand, arm, leg, face. Distance became difficult to perceive because of the damaged brain’s inability to send and receive the correct signals from neurons and broken neural pathways in the motor center of the brain under severe duress. Brain cells die, or atrophy. The chemo also kills healthy cells, as well as the malignant cancerous cells as part of the course of treatment. So I would look forward to those intermittent OT and PT sessions while confined in the hospital because it gave me some sense of being an active participant in reclaiming control of my body via a concept I have come to know as neuroplasticity. This is the idea that despite the damage done to our brains, humans have the remarkable capacity to rewire broken pathways to create new neural connections so that we can recover much function that we have lost.
Believe in brain plasticity!
Understand that Time is Brain!
Welcome the opportunity to work with a licensed Physical Therapist and Occupational Therapist, and utilize any and all therapy options available to you, because this will avail you of the possibilities to get creative with the monotony that regularly scheduled therapies can become. My advice to you; be patient, after all you are a patient, embrace this role and work slow and steady, with intention, and care, one step at a time. You will be rewarded for your diligence in time, knowing that you are working to better yourself. Be thankful for what you can do, and aspire to what you can no longer do, but don’t get caught up in negativity, stay positive in your participation. You and your OT are a team. Think of your OT as a coach with a lot of information that you don’t have, and let them supply you with their insights, also take note of each and every activity and how it affects you as a whole person. Just because you are working with your left hand pointer finger doesn’t mean that a spasm can’t show up in your shoulder or even another limb like the left leg. Neurological based illnesses can be tricky like that. Sometimes you have little feeling characterized by numbness and other moments you may experience waves of hypersensitivity to touch, temperature, sensation in general. If there are pins and needles are they painful or are they just annoying? If they are painful, what is the level of pain 1- 10? More importantly what is the character of the pain? Dull, sharp, cutting? Narrow in scope, or widespread? Prevalent on one side of the body, as is common in hemispheric injury to the brain, like stroke, cancer, Parkinson’s, head trauma, etc. In working closely with my OT, I discovered something based on our mutual observations. I began to understand the range of motion I had access to, the degree of strength I had retained post-cancer, the levels of chronic pain I experienced, and the patterns of spasticity. Once we understood these parameters of the present state of my neuro-muscular function we could work together to devise a strategy and to set goals within a reasonable regimen of exercise and stretching, focused on both gross motor function, and balanced by fine motor dexterity.
It is important to take breaks regularly in between reps of assigned activities. The reason for this is two fold; first you want to avoid fatigue, and allow for muscle recovery, second to build new motor memory. And remember it is not about force, you need to exert intentional effort in small sometimes frustratingly micro increments. Know that what you are doing is hard work. Giving up is an enticing option, don’t do it. Remain positive at each task, don’t get angry with yourself or with your therapist. You can be angry with your situation and the best revenge is success and independence. Make it your mantra, and talk to your OT.
At each step share your observations with your OT, and listen to theirs, in this way you form a partnership that will see you through. Do your job as a patient, allow the OT to do their job well by applying their skills and customizing their therapy toolbox to you and your body. That is sound advice that will
allow for the benefits of physical intervention to get you well beyond what any medication can do. This is the best, most comprehensive healing you will experience and with time you’ll notice the return of some long lost abilities. Think of it this way; encapsulated in two anecdotes,
1. “Let me help you.” 2. “Go hard or go home.”
Your obligation as a patient and the OT’s obligation as a specialist is one and the same. Try. That being said, the Saebo Glove didn’t exist when I started OT in those early days of my hospital time and regular outpatient therapy work. The consensus by my evaluators was that I had “plateaued” in my progress and they could not, or would not continue to work with me since they felt my progress was as good as can be expected given my condition. I was encouraged to find resources in the community and given a program of home based therapies and compensatory strategies I could employ to be safe and active. One resource I immediately took advantage of was the Livestrong strength training program for post-treatment cancer patients at the YMCA. I also found other resources through community organizations like Gilda’s Club NYC, and the JCC in Manhattan. I continued with a full program of exercise including Eastern practices of Tai Chi, Acupuncture, Yoga, Qigong, and martial arts like Aikido. I was able to return to OT because I was demonstrating a desire to improve my neuromotor function and a demonstrated ability to continue along a path of wellness and improvement, but most of all an advance in technology became available to Occupational Therapists, The Saebo line of products, and specifically the Saebo Glove have given my doctors and my OT Matthew Bernardo a new tool to try out with me. Having a new tool available for post-TBI patients is potentially a game changer. My OT Matt had the foresight to recognize this potential, along with my NYU neurologist and neuroscientist Dr. Preeti Raghavan, and my physiatrist Dr. Ira Rashbaum at the Rusk Institute. Because Matt and I were getting results clearly demonstrable within a month’s time our mutual excitement about the possibilities prompted us to devise a custom program of activities with the Saebo Glove. The remarkable result was that the glove, by providing the combination of a stability agent and also a systemic customizable tensioners i.e. resistance bands at each joint, allowed for both a neutral position for pivot point rotation, but ultimately allowed my brain access to muscle groups, particularly fine motor muscles that had previously even with extensive OT been inaccessible. Therefore by allowing access to these fine motor muscles my motor memory could finally be rewritten in the brain and allow for neural pathways to light up once again in a very tangible way for me as a patient and an observable manner by my professional OT as well as
my Pain Specialist Dr. Alan Carver (Memorial Sloan-Kettering.) So the first thing I noticed was that the muscles that had slipped into atrophy, namely the flexors and extensors in the forearm extending to the hand finally were activated again, immediately reducing the sharp chronic pain I had been feeling for months on level 11, like razor wire cutting into my deepest muscle tissues. This was a welcome and unexpected result on all counts, but then I noticed quite suddenly I could reach for a door handle with my affected hand and turn the knob, pick up a cup of water, reach for a pencil, these all tasks unimaginable before doing a guided regimen with my OT Matt
at Rusk, with demonstrable progress. My pain level after using the glove for 3 months has scaled back to an average of 7, and the character is much less sharp, as though we had sanded the edges off the razor wire. It’s going to take a lot more work, but for the first time there is hope to reach my goal of 90% recovery. In the word’s of astronaut and Apollo 11 Commander Neil
That’s one small step for man, one giant leap for mankind.
I said recently to one of Matt Bernardo’s OT student assistants Brittany Cuthbert, “We are on the cutting edge of OT right now, I can feel it.”
I still remember the darkest days of my hospitalization during that drop in my white blood-cell count, I was on forced oxygen to bring my levels back up to par, I recall this anecdote. The physician’s assistant wheeled in the oxygen device at night, presented me with a full head mask, much like a helmet, and to lighten the mood I suppose, he said,
Are you ready for your mission sir?
Well now with my cancer in remission, thanks to my brilliantly pertinacious Neuro-oncologist Dr. Michael Gruber. Thinking forward, I am finally equipped to reach the impossible goals and I feel really good about that prospect and excited for our future. We must choose to try.
“We choose to go to the Moon! … We choose to go to the Moon in this decade and do the other things, not because they are easy, but because they are hard; because that goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we are willing to accept, one we are unwilling to postpone, and one we intend to win …”
Creativity comes into play in outpatient Occupational Therapy, but once at home or involved with your community based activities take time to look around you, and share your knowledge, and brainstorm with people who know you. In my case I met with my personal trainer at the YMCA and we tried out some ideas to augment my exercise routine and safely incorporate the Saebo glove. At Gilda’s Club NYC I talked to my Qigong teacher and my Aikido Sensei about using the glove while doing the forms of movement we do in a group. Also I used my glove while taking my Art Workshop class to enable reaching for materials. These things obviously will be different for every patient, but know that you can free yourself to seek out areas of opportunity in your own lives as it best suits you as a patient, and as always keep your OT in the loop so that you can pace yourself accordingly for optimal results! After working with the glove for three months; I can now catch a ball repeatedly with my affected left hand. Not a panacea, but a good start.
Postscript: Thanks and appreciation to: Dr. Michael Gruber, Dr. Debra Gruber, Minerva Utate, Albina in finance office, Dr. Preeti Raghavan, Dr. Ira G. Rashbaum, NYU Langone Hospital, NYU Cancer Center, NYU Rusk Institute, Matthew Bernardo OT, Clara Gaspari PT, Claribell Bayona OT, Brittany Cuthbert OT (student,) Jordana Mendelson, PhD., Ying Lu, Phd. David Ptak, Dr. Shelly Ozark, Carol Ptak, Aedan Ptak, Violet Stone, Kathleen & John Schwenk, Gene Nelson, Daniel & Lexie DeSarmiento, Edna Schneiderman, Phd, Dr. Erik Parker, Dr. Howard Ginsburg, Dr. Neera Kapoor, Dr. Mohammad Fouladvand, Dr. Michael Hutchinson, Dr. Alan Carver, Memorial Sloan-Kettering Cancer Center, David Litke, Phd, Dr. Phillip Salteil, the Nursing staff at NYU Langone Medical Center, YMCA, Janet Martinez, Yalitza Yalle, Jack Lund, Gilda’s Club NYC, Red Burns, Ken Grey, Glen Matsuda, Edward Ziter, Phd, Olo Acupuncture, MTA Access- a-ride, Robin Glazer, Tony Kung, Dr. Gregory Pitaro, Dr. Phyllis Kwok, MHMG, New York Zen Center, the JCC, Jill Lane, Christi Mladic, Eathan Janney, Michael Buishas, Miss Lily’s, Max Glazer, DJ Select, Michael Clemow, Amy Koshbin, Jessica Cha, Cyrus Pireh, Meghan Krausch, Phd, Gloria Suzie Kim, Lina Giraldo, Stephanie Sheldon, Fran McGee, James Fernandez, Phd, Myles Robert, Arore Fagnen, Sara Hendren, Jason Finkelman, Cynthia Oliver, Ann Hairston, Lara Gerstein, Cindy & Kenny Chau, Britt Sady, Lyn Krueger, Kate Baier, Derek Cheung, Shawn & Rosemary Watts, Saebo Inc., Sabi Brand Inc., The Creative Center at University Settlement, Gustavo Solis, Oresti Tsonopaulus, Susan Eng, Stephen de Groot, Cassandra & Charlie Brooke, Dee & Michael Mendelson, Betsy Aaron, Nicole Marie Randall, Jordan Patinkin, Judy Tulin, Melvin Major of Melvin’s Juice Box, NYC Social Sports, Olivier Dessyn, Nathalie Compagnon-Dessyn, Edwin, God. And many others too numerous to mention.