prayers answered

Posted by rae on Jan 15, 2009 in Mom's Corner |

If you pray for us, thank you. 

Brain Injury Services finally made contact and we have an appointment for a home visit at the end of the month.  They make no promises for a case manager but this is the first sign of hope for their assistance since their initial visit last January. 

We have an appointment with a neuropsychologist on Friday. This doctor was previously the staff neuropsychologist for the Bridge Program at Mt. Vernon Rehab. Her primary focus has been on brain injury and she comes highly recommended.  From my perspective, Michael’s continued recovery now requires the assistance, guidance and skill of trained professionals. 

Tomorrow we have an appointment with Michael’s Physiatrist at Mt. Vernon Rehab.  During that appointment Michael will have all his current medications checked to make sure that we are optimizing pharmasuitacles . Interestingly enough while we were waiting to see the neuro-opthamologist, I picked up a magazine to browse through and ran across an article “Common Drugs May Cause Cognitive Problems”.  I begin reading about anticholinergic drugs.  Yeah, don’t feel bad I had no idea either.

Middle of December, just before Mike left to go on the trip to Florida, I noticed that his memory was beginning to slip.  Hard to measure at times but for the last few months I could tell that the degree of memory, the ability to lay down new memory was improving.  He would remember what he couldn’t hang on to before.  He could read the “daily” and be able to give details about the reading five minutes later, an hour later and at times even that evening and beyond. The Intellectual Devotional that Mike reads everyday after breakfast, he reads to himself sitting at the table. After the first read, he’ll read out loud to me or I’ll read to him, we discuss the subject and then he takes notes (with help) on the information that he might need to remember if he were taking a class. Mike would eventually like to return to school.

Ok, so I noticed there was a decline in short term memory and I noticed that he wasn’t laying down new memory that is key to learning new information.  Our exercise routine was interrupted around the Thanksgiving holiday and never really got back on track.  He was going to Florida, there was Christmas…we all fall into it, we’re really just making excuses but they’re good excuses right? So I’m thinking maybe it’s the lack of exercise, maybe this is the plateau we’ve been running from… but sitting in Dr. Snyder’s office, I read about what may have happened.

Mike clears his throat a lot.  Sinus drainage? A new habit? We made an appointment with his primary care and he said Mike’s ears were full, his sinuses were full almost to the point of infection.  He explained that the post nasal drip would cause mike to clear his throat even when he didn’t realize his sinuses were draining.  Mike is also belching quite a bit, he seems like he takes in  alot of air but the Dr. said that the two may go hand in hand. Draining sinuses possibly = reflux.  Along with the new allergy med, he prescribed pantoprazole to reduce the amount of acid produced in Mike’s stomach.

I read the article, started putting the time frames together (memory/cognitive stall and the new meds), pulled up a few sites on the web and low and behold, pantoprazole is an anticholinergic drug.  Although Michael’s belching did improve with the pantoprazole, he hasn’t taken one pill from the bottle since that day.

Our family physician is one of the best doctors we’ve ever had.  I guess the lesson is no matter how capable your doctor is, no matter how much you trust them, you have to be your own advocate.  Research the diagnosis, research and cross check your prescribed medications - it worked for us. 

How’s Mike doing? Well, as of Monday he is the COO of his own company.  A purpose driven life - a different approach might get us past the lack of drive to continue the long hard course. Mike wants to drive, he wants to continue his education, he wants to work but he was losing the energy and focus to make it happen.  We talked about purpose - he needed to understand his role in rehabilitating his brain. He said he and Karl had always talked about starting a company together and based on the list of things that he is in charge of now, he said he was reconstructing, rebuilding his life. He claimed his role as COO and named his company Build It Back Construction.  He elected himself the chief operating officer in his own construction company- Mike needed to understand his importance, his purpose.  He needed to identify his purpose.  Mike helped Charlie put together a recruiting company from the ground up.  He understands the commitment, the hours of the building the foundation brick by brick and pushing himself even when progress seems as though there’s none at all.  Showing up for work each day and giving it your all is vital to the success of the company.  The most important role of his life is as COO of Building It Back (rehabilitating his brain) and now he can wrap his head around a role of responsibility that he can be proud of.  A reason  - the success of his own company depends on him now.  OBTW, I am CEO, Bobby is CFO and Nathan is his spiritual advisor, Sylvette’s and Emily’s roles  have yet TBD - a little challenge to those non texters :) 

We’re setting realistic goals each day and we’re building to achieve weekly goals, monthly goals.  He selects a skill that needs honing or maybe one that was lost so we’re starting from the beginning.  I reminded him that surviving the brain injury was just the beginning.  He started from nothing and had to learn to feed himself again, he re-learned to walk, re-learned to read and to write, re-learned to feed and dress himself.  He can do this, the success of his company depends on it.  We have big plans - we’re going to be more proactive - we’re going to reach out and we’re going to accomplish big things.  It’s going to be a great year - stay tuned! 

xxoo

6 Comments

Jimmy/Jam (as mike likes to put it)
Jan 15, 2009 at 11:02 am

Hey can Dito partner with Building it Back on some projects?

Mike, congrats on your new biz. I am fully behind your initiative. Let me know how I can help you succeed.


 
Trish
Jan 15, 2009 at 2:44 pm

Well Michael I have been told this is the time in my life to rebuild and to possibly re-invent as well. So any tips you would like to share with me..I’m all ears.


 
Erin G.
Jan 15, 2009 at 6:39 pm

Rosner family,

I was speaking about your situation to a woman with whom I work. Her nephew suffered TBI as a result of a car accident and subsequent 5 month coma. As she was describing his situation, she said that they were told he would never come out of his coma. His family (and not therapists- not that I’m questioning the benefit of therapists) began stretching his limbs during their daily visits to keep his body mobile. Approx. two weeks later, he came out of his coma. I’m not suggesting that exercise is the sole answer, but this very smart and intuitive woman thought that exercise was a very positive influence on her nephew’s recovery. Just a thought…


 
rae
Jan 15, 2009 at 8:39 pm

Erin, we did the same thing when mike was in a coma. I spent all day, every day at the hospital with mike. When I was in the room, I stretched his legs, and then exercised his legs as if he were riding a bike, I moved and stretched his arms as much as I could without pulling out the IV’s and I wasn’t the only one. The rest of the family, his friends included, moved his body, massaged his feet and rotated his ankles so they would stay strong. We talked to him, cried to him, yelled at him and reminded him how much we needed him to survive and that he had the strength to fight the biggest battle of his life. I brought in his MP3 player and played music that he would recognize, his own music. Mike had someone that loved him in his room almost 24/7 doing anything and everything we could think of to help him feel and know that we were there.

Since then, exercise has been an integral part of Mike’s daily routine and I would say a huge factor in his recovery. Researching success in stroke victims with tandem bikes (also an injury to the brain) we walked two tandem miles a day using bamboo poles as connectors so his body/his brain would be forced to move at a faster pace. We have a gym in our home so with inclement weather, Mike would do a half an hour on the elliptical or stationary bike. We work out with On-demand Exercise TV; we have a Pilate’s reformer which we use for stretching out the injured muscles that try to return to stiff if they’re not stretched on a regular basis. Exercise and oxygen getting to the brain is important for all of us but especially for people with brain injuries.

Mike went to his physiatrist today - Dr. Kim told Michael that without the support of his family and friends, he would not be where he is today. He said that no pill, no therapist can do for him what the support has done and will continue to do as he continues the healing process. He said to know that your friends still accept you, still care about you, …to know that your friends and family will be there no matter how long the journey, is very important to his continued success. Sometimes Mike needs to things from someone other than me, a professional with experience in treating patients with brain injury. Dr. Kim gave him advise, the same things we talk about but it carried more weight coming from him. And that’s perfectly ok…it’s like a second opinion - it’s a good thing.
Fatigue and initiation are huge hills to climb with brain injury but I think what really happened to Michael was the change in our routine. It started with the holidays - in November with Thanksgiving, then the vacation to Florida, then Christmas and out of town visitors, then New Years and more out of town visitors and our schedule went out the window.

Mike hasn’t had a therapist since May but his family and friends keep pushing him and probably more than a therapist would have. I don’t think he needs a therapist (physical/speech/OT), I think WE need help finding direction - the “ok, what do we do next?” what resources are available for this stage of recovery for persons with TBI? To hear if what we’re doing is the right thing, or is it too much, is it too little or is it just right? Maybe it’s me more than Mike that needs affirmation from a therapist.

At any rate Erin, I totally agree that a solid circle of familiar support makes all the difference and that exercise should be a part of anyone’s daily routine especially those recovering from brain injury.

Thank you for caring about Michael and thank you for your thoughts.


 
mike (THE man)
Jan 19, 2009 at 11:23 pm

ok sorry Ern but “but this very smart and intuitive woman” ya know without knowing any better one could think you are saying that the person you are talking about and the person who you are speaking to is NOT a smart,intuitive woman.

now one can only hope things may not be as they seem

to the middle east: PEACE


 
Erin G.
Jan 22, 2009 at 10:06 pm

Mike,

Unfortunately, the problem with blogging is that one cannot adequately convey his or her tone or intention. I would NEVER suggest to anyone with whom I was speaking that he or she was not smart or intuitive. Firstly, because I don’t believe that about your family (to whom I addressed my message), and secondly, because I don’t believe that this site is meant for anything negative. The reason I described the woman in my message as smart and intutive was to convey that she was a woman I trusted, whose experience I found worth relating. I apologize for any ill feelings or mis-communicated implications. My intention has only ever been to express my support and well-wishes.


 

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