Thursday, October 7, 2010

Our Journey through TBI (Traumatic Brain Injury)


On June 11, 2006 Gary had come home from working with our brother-in-law Tim when he started to act out of character. I was on the phone with his mum Joan and thought he was playing around with me. Joan said “put him on the phone” But, at that point his face and right side of his body started drooping, he was having a stroke. Joan said “get of the phone and call an ambulance” I called an ambulance and they took him to Strong Memorial Hospital.

In the ER Gary was given the tPA (tissue Plasminogen Activator), which has to be given within the first 3 hours of the stroke. This drug is a potent blood thinner used to dissolve artery-clotting blood clots and allows blood flow to return to affected areas to prevent further damage to the injured part of the brain.

The first 72 hours where very critical for Gary his brain was swelling. The space between both hemispheres of his brain where over-lapping. For a 37 years old brain this is a real problem as there is no room for the brain to move. Whereas there is a little more room for an older brain to move. After 72 hours his brain stopped swelling.
Gary was moved to the rehabilitation ward of Strong Memorial Hospital. There he received PT (physical therapy) for his right leg, OT (occupational therapy) for his right arm, and S/P (speech therapy) for his Aphasia and Apraxia of speech. Gary was totally paralyzed down his right side so they got him started right away with these three therapies. He also had to take Heparin (anticoagulant) 3 times a day so that his blood wouldn’t clot. He was also put on Lipitor to lower his cholesterol and a coated Aspirin to help prevent another Stroke. He couldn't speak, make a sound or even use the motor function to do these things that we everyday take for granted. It is so amazing what is involved in just making one letter. Gary had to relearn how to move his mouth and make the correct sound for the position of his tongue. The Speech Pathologists where amazing, the OT and PT staff where also. Gary was on the rehab ward for 1 month, he had to walk a certain length before he could leave the hospital.

When Gary got home he got PT, OT, and S/P from Upstate Home Care. Gary was still in a wheelchair, cane, commode, and tub transfer bench. He still could not speak, not even a letter. For 2 months he worked with the therapists at home. He didn't need the wheelchair anymore and he was walking so much better so Upstate said he was ready for outpatient Rehab.

Gary started at Clinton Crossing's rehabilitation center. He got PT, OT, and S/P there. While there he was told after a couple weeks that they could not help him any further with PT. We where told that your most recovery was the first 6 months, this is not true you keep on getting better. Gary worked at it by walking everyday sometimes he walked between 5 to 10 miles; he rode his bike and exercise bike and some basic exercises. Gary started having seizures 6 months after his stroke. The first one was in the winter of “07” we where out having dinner in Avon, NY and Gary couldn’t eat his food he didn’t feel to good, I knew there had to be something really wrong with him he never misses a meal. We headed to Strong Memorial Hospital when he started to seize he was having a gran mal seizure in the car. I didn’t know what to do. I pulled the car over got out and tried to flag someone down, but not one person would stop they must have thought I was crazy. Finally an off duty fireman stopped and called an ambulance for us, the seizure lasted about 6 minutes but felt like a lifetime.

He has had a few absence seizures, which are sometimes referred to as petit mal seizures. His last seizure was in August “08”he had this one in our apartment this one lasted 35 minutes. It’s so weird I coped with this one like nothing. Gary was admitted into Strong Memorial Hospital for 3 days for observation. Gary has been seizure free for just about 3 years now. What a relief. He was put on 3-100mg Dilantin (anti-epileptic drug used to control seizures) after his first seizure. When he had his last seizure he was put on another seizure medication along with the Dilantin this one is called Keppra 2-1,000mg. He no longer takes the Dilantin because he has been seizure free for longer than 2 years. He has been of it about 8 months and still no seizure.

He continued with OT until he got back the full use of his arm. But he still continues to need his Speech Therapy. He stayed at Clinton Crossings until June 2007. Gary was at Clinton Crossings for just over a year. His speech Pathologist Heather Coles went above and beyond her duty as a pathologist. She has helped Gary and my self in so many ways. Heather is one of the best people we have known through everything. We continue to keep in touch with Heather. After Clinton Crossings Gary enrolled in an Aphasia clinic at Nazareth College. This is an excellent program he has been attending since June 2007. He receives Speech Therapy from the clinicians.
He goes here every semester. His speech professors Merideth Rao and Sandhya Seshadri at Nazareth speech clinic are great teachers also. Gary’s mum Joan and his sister Michelle and myself help him with his speech on the weekends, which is a wonderful help for him. We also play games Scrabble, Yahtzee, and card games. Gary also reads books and listens to books on audio CD. He still continues walking, which I do with him and doing basic exercises. Which is an ongoing process. I have to be with him so that he has help with his speech and so that there is someone there in the case he has another seizure.

Gary also continues to see his Neurologist Dr Curtis Benesch on a 6 months basis. Now he feels comfortable going out to do volunteer work-helping people with a TBI (Traumatic Brain Injury) and other disabilities. Also to show that you can regain everything back, but you have to work at everyday. Some days are harder than others. There may be days you don't want to do it. BUT YOU CAN DO IT!!! And enjoy life. Gary also continues to visit the rehab ward at strong to see the therapists who helped him. We have met so many wonderful people during our journey.

We both started working as volunteers at the Hickok Centre for Brain Injury. It gives Gary a chance to see TBI from a different view. It also helps him and the members of the day program in positive ways through their recovery and for Gary to see how much work he can do before getting tired.

“I am so thankful everyday for how far Gary is progressing. I can’t imagine what this has felt for him. But for me it has been one of the worst events in my life. There are so many people we would like to thank for everything they have done for us. Without them we would have never have gotten as far as we have.”

2 comments:

  1. Dear Gary-

    Mary's article is really good!!!! I suggest you foreword a copy to "Stroke" magazine.

    ReplyDelete
  2. Mary and Gary,
    Thank you so much for sharing your story. I, for one, am very glad to know you and have you come to the Hickok Center.
    Just remember that no matter what the professionals say, they do not live inside your body, YOU do. It is impossible to say exactly what can and cannot be done.
    Robert

    ReplyDelete