I found a couple of videos I had from 2009 when Hubby was admitted for testing to rule out hydrocephalus. I knew I had written a couple of FB posts before I ever started blogging so I found them and thought I would share them both.
May 30, 2009
Since Oct of 2007 Hubby has had a diagnosis of Lewy Body Dementia. A combination of Parkinsons symptoms and Alzheimer symptoms. I've watched the other half of my heart decline for almost 2 years now. Some days at a very quick rate and some days unchanged. It has been a roller coaster ride for sure. These days he can't be left alone as he is a fall risk so I COMPLETELY understand what the expression "shut in" means. I'm grateful for this social network as here is as close as I get to spending any time with my family and friends and I can still feel a part of their lives.
Life may change though. Hubby had a Neurologist appointment last Thursday. They had the CT back from his head and it showed LARGE amounts of spinal fluid in his brain. Yeah, I know that doesn't sound good BUT they are going to admit him for a 3 day spinal tap and relieve the pressure from his ventricles and HOPE it makes a world of difference!! They could see an immediate change! Could it be that simple? It sounds almost too good to be true. Could he regain some of mobility and thinking back or has he had too much damage? My mind and heart are in a whirlwind with hope.
Then I have to think of all negatives also. If it helps enough, they will do brain surgery to insert a shunt and drain the spinal fluid. His age (72) comes into play here with brain surgery. IF he actually has Lewy Body plaques in his brain also, then we run the risk of an anesthesia catapult into a worse condition as lewy bodies and anesthesia are like bleach and ammonia mixed. Right now he is calm, not anxious, he feels safe and protected. Although I feel he is missing out on much of his life he is content where he is. Where will this procedure leave him and in what condition?
So many questions and more prayers asked as we are faced with possible life changing decisions. The biggest and hardest prayer is "Thy will be done". Following through with that though has been difficult as I find myself guarding my heart. I'm afraid to have him just to lose him yet again. I'm glad my Heavenly Father is my comforter and keeper of my soul. I could not make it without His hope and love. I look toward the day where there is no sadness or confusion. Just worship.
Wanted to share, keep us in your prayers.
Kathy
Jun 19, 2009
He endured a spinal tap for 3 days in a row with very little to no change in his gait or cognition.
I endured 3 nights of being away from him as the V.A. would not let me stay with him.
My fear of him getting confused, anxious and wandering or falling, then the staff giving him meds to keep him calm tearfully spilled over onto the poor Dr. I was assured that they would NOT give him any meds other than what was in his chart for any reason. A little calmer I left and double checked personally with the head floor nurse (I don't think she was too happy with me) before I absolutely had to leave. Came home and crashed and returned the next day bright and early. He had a bed alarm on his arm so they knew if he ever got out of his bed for any reason.
The tap however was not successful so hydrocephalus was ruled out and a shunt surgery is not even in question. I suppose the only thing accomplished was that my poor Bobby got a headache and is a little grouchy. We are however back to the , Why can't I drive? phase. I'm not sure how long that will last.
So it looks like Lewy wins again. And I'm too tired to give it much thought today.
Just wanted you all to know how things went.
Anxious Heart
So are you ready for a blow away?Since Oct of 2007 Hubby has had a diagnosis of Lewy Body Dementia. A combination of Parkinsons symptoms and Alzheimer symptoms. I've watched the other half of my heart decline for almost 2 years now. Some days at a very quick rate and some days unchanged. It has been a roller coaster ride for sure. These days he can't be left alone as he is a fall risk so I COMPLETELY understand what the expression "shut in" means. I'm grateful for this social network as here is as close as I get to spending any time with my family and friends and I can still feel a part of their lives.
Life may change though. Hubby had a Neurologist appointment last Thursday. They had the CT back from his head and it showed LARGE amounts of spinal fluid in his brain. Yeah, I know that doesn't sound good BUT they are going to admit him for a 3 day spinal tap and relieve the pressure from his ventricles and HOPE it makes a world of difference!! They could see an immediate change! Could it be that simple? It sounds almost too good to be true. Could he regain some of mobility and thinking back or has he had too much damage? My mind and heart are in a whirlwind with hope.
Then I have to think of all negatives also. If it helps enough, they will do brain surgery to insert a shunt and drain the spinal fluid. His age (72) comes into play here with brain surgery. IF he actually has Lewy Body plaques in his brain also, then we run the risk of an anesthesia catapult into a worse condition as lewy bodies and anesthesia are like bleach and ammonia mixed. Right now he is calm, not anxious, he feels safe and protected. Although I feel he is missing out on much of his life he is content where he is. Where will this procedure leave him and in what condition?
So many questions and more prayers asked as we are faced with possible life changing decisions. The biggest and hardest prayer is "Thy will be done". Following through with that though has been difficult as I find myself guarding my heart. I'm afraid to have him just to lose him yet again. I'm glad my Heavenly Father is my comforter and keeper of my soul. I could not make it without His hope and love. I look toward the day where there is no sadness or confusion. Just worship.
Wanted to share, keep us in your prayers.
Kathy
Jun 19, 2009
Home from the hospital
Current mood:
disappointed
My Hubby just spent 4 days in the hospital ruling out Hydrocephalus.disappointedHe endured a spinal tap for 3 days in a row with very little to no change in his gait or cognition.
I endured 3 nights of being away from him as the V.A. would not let me stay with him.
My fear of him getting confused, anxious and wandering or falling, then the staff giving him meds to keep him calm tearfully spilled over onto the poor Dr. I was assured that they would NOT give him any meds other than what was in his chart for any reason. A little calmer I left and double checked personally with the head floor nurse (I don't think she was too happy with me) before I absolutely had to leave. Came home and crashed and returned the next day bright and early. He had a bed alarm on his arm so they knew if he ever got out of his bed for any reason.
The tap however was not successful so hydrocephalus was ruled out and a shunt surgery is not even in question. I suppose the only thing accomplished was that my poor Bobby got a headache and is a little grouchy. We are however back to the , Why can't I drive? phase. I'm not sure how long that will last.
So it looks like Lewy wins again. And I'm too tired to give it much thought today.
Just wanted you all to know how things went.
Thinking of you this holiday season and wishing you a happy Christmas and even better new year. May God bless you and your family.
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