Book Summary

Book Summary ** Our lives, after the diagnosis and subsequent treatment, of my husband for a brain tumor, clearly have taken a path less traveled. Yet our journey has and continues to be, a journey of hope, joy and of unyeilding commitment. We invite you into our lives, a view of our childhood, marriage, a marriage seperate from convention, yet strongly bound. Join us as we recall the last twenty-five years, twenty of which have been spent LIVING with a brain tumor. Come, witness our challenges and discover our triumphs as we reinvent our relationship, struggle to redefine marriage roles, communication styles, and reclaim intimacy after illness.

Wednesday, May 23, 2012

Neurology Appointment Today after 20+ years with a brain tumor life gets routine?

Life gets pretty routine but it hits you when you have to face reality.  Don't get me wrong this was a good, follow-up appt but I tend to get into "the routine" and don't recognize how fortunate or unfortunate we are.  I read every day of more and more people finding out they have a brain tumor.  I read even more stories of folks needing hospice care because their options have diminished. 
Thank goodness my rountine reality is different.  I am so grateful but sometimes my reality stinks and I feel sad for what his brain tumor has taken from him.
I look at Ron as he is trying to tell the nurse how much he weighs.  He says 111, she doesn't understand but I without thinking take out a piece of paper to have him write it down.  A few seconds earlier had told her he is aphasic and can't tell her how tall he is, that I knew.  I saw he had weighed himself the evening before at the Y and would know, so got him to commuinicate the best way I know how.
This appt was a follow-up to see how he made out with his recent stint with Physical Therapy and Speech Therapy.  And most important I got to report he has had no falls and no seizures. 
Well the physical therapy, mostly done in the pool did great things for his balance and endurance.  He is able to go out for walks and do some weight lifting with me at the Y.  Each time we go he seems to be able to do more weight and is surprised by what his paralyzed arm is able to do.  Most of the weight is lifted by his left but he puts the right arm through the motions, with a little help from me.
Speech Therapy confirmed that he could use an app on his ipad that would help in some areas of communication.  With the customized app he can choose pictures of what we need at the grocery store and what he wants to have for meals during the week.  This is huge help to me.  We have yet to perfect it so that he can use it with friends and strangers as part of a conversation.  Lots more work and time is needed for this.  I get stuck in my routine and need the motivation to do these things.
We got the ok to tweek his seizure meds to twice a day rather than 3 times a day.  This will make his life a little more normal to not to have to worry about the 2 pm dose.
I know the effects from his brain tumor will never go away and life for me although different than most does get routine but a doctor visit like this makes me do a reality check. 

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