Fourth Of July
Mom pretty much plateaued through the month of June so I decided last week to start her on a 4 day rotation of the shot instead of the standard 7 days.
Last night we walked on the Hollywood Beach boardwalk and watched the fireworks on the ocean. Mom wore her bicentennial 1976 Red White and Blue Rucker Park Jersey with stars on the side... mom's rockin' old school!
I did notice small and minor behavior improvements in the past 30 days, mainly around arranging and awareness. One night in mid June I ordered Chinese take out and I could have swore when she sat up in her chair she was almost totally back. She was alert, flush and looked great overall. It was real cool.
The biggest improvement in the past week is mom can follow my finger with her eyes from side to side something even the doctors could not get her to do during her last check up. So clear and rapid eye movement has improved greatly.
Can't wait to see how the 4 day cycle goes as I am purchasing an inversion table in hopes of getting more of the Enbrel to her brain.
Stay tuned
Ron
Thursday, July 5, 2012
Monday, May 28, 2012
Memorial Day - Swimming!
Memorial Day - Swimming!
Today Linda and I got in the pool and swam together. She puts her arms around my neck and floats on top of me while I doggy paddle around in the pool.
Last year this time we would do this 2-3 times a week so this was real special that a year later we are now getting back to doing some of the things we enjoy together.
I didn't realise it's been a year since we swam together until we were actually doing it.
So far after 8 shots the medicine basically rolls back roughly 8-12 months of time / wear and tear of the disease.
I guess you have to ask yourself is taking the shot worth having your loved one for another year. To me it is worth it. For me.... to literally buy an extra year by taking the shot is more than worth it... to me it's priceless. I don't know where this goes and how this goes from here but swimming again with mom today was awesome.
"Today was a good day"
Today Linda and I got in the pool and swam together. She puts her arms around my neck and floats on top of me while I doggy paddle around in the pool.
Last year this time we would do this 2-3 times a week so this was real special that a year later we are now getting back to doing some of the things we enjoy together.
I didn't realise it's been a year since we swam together until we were actually doing it.
So far after 8 shots the medicine basically rolls back roughly 8-12 months of time / wear and tear of the disease.
I guess you have to ask yourself is taking the shot worth having your loved one for another year. To me it is worth it. For me.... to literally buy an extra year by taking the shot is more than worth it... to me it's priceless. I don't know where this goes and how this goes from here but swimming again with mom today was awesome.
"Today was a good day"
Wednesday, May 16, 2012
New firsts!
It's Wednesday night and Linda has started using her right hand to feed herself.
We were just laying in bed when she reached over with her right and rubbed my chest.
The big news tonight is our weekly shot is tomorrow morning but for the first time she is gaining momentum heading into tomorrows treatment. Normally she does well right after the shot and then again 3 days later. Finally by around the 6th or 7th day I am looking forward to the shot to keep the momentum going but with only one day to go she is improving like no other time in her first 6 weeks.
When I ask her questions she is now trying to respond and speak just about every time. Tonight she told me she was 'thirsty'. Lots of noises and attempts to grumble words especially trying to communicate freely now.
She spoke a full sentence tonight but it was unaudible.
We were just laying in bed when she reached over with her right and rubbed my chest.
The big news tonight is our weekly shot is tomorrow morning but for the first time she is gaining momentum heading into tomorrows treatment. Normally she does well right after the shot and then again 3 days later. Finally by around the 6th or 7th day I am looking forward to the shot to keep the momentum going but with only one day to go she is improving like no other time in her first 6 weeks.
When I ask her questions she is now trying to respond and speak just about every time. Tonight she told me she was 'thirsty'. Lots of noises and attempts to grumble words especially trying to communicate freely now.
She spoke a full sentence tonight but it was unaudible.
Tuesday, May 15, 2012
Wonderful Mother's Day!
Wonderful Mother's Day!
This weekend was simply described as a normal weekend with not a lot of big news or improvements to mention. That was until about 7 pm on Sunday night.
Another massive breakthrough occurred again.
Linda has gathered enough of her faculties and finally and truly start to snap out of the 'funky trance' this disease causes. This change is more of a title shift rather than a temporary adjustment.
My mom literally broke down crying realising how far and deeply gone she was.
She laid down on the bed and wept and wallowed out loud. She literally knew and acknowledged how close we cut it. She was and is able to make 'human noises' ya know grunts and groans from someone who is alive :)
She is really happy now. She looks at me different. She looks at me like she knows what and how much I did to reverse the dementia. She is not totally back yet but this is a real step forward in the right direction.
Nothing feels better than having your mother look at you with happiness knowing you did everything possible on earth to help them live.
Maybe that's what motherhood and fatherhood are really about.
It's a nice taste of satisfaction for all of us.
Mom's smiling....
This weekend was simply described as a normal weekend with not a lot of big news or improvements to mention. That was until about 7 pm on Sunday night.
Another massive breakthrough occurred again.
Linda has gathered enough of her faculties and finally and truly start to snap out of the 'funky trance' this disease causes. This change is more of a title shift rather than a temporary adjustment.
My mom literally broke down crying realising how far and deeply gone she was.
She laid down on the bed and wept and wallowed out loud. She literally knew and acknowledged how close we cut it. She was and is able to make 'human noises' ya know grunts and groans from someone who is alive :)
She is really happy now. She looks at me different. She looks at me like she knows what and how much I did to reverse the dementia. She is not totally back yet but this is a real step forward in the right direction.
Nothing feels better than having your mother look at you with happiness knowing you did everything possible on earth to help them live.
Maybe that's what motherhood and fatherhood are really about.
It's a nice taste of satisfaction for all of us.
Mom's smiling....
Tuesday, May 8, 2012
What I Wasn't Prepared For - The 3 Year Burst!
What I Wasn't Prepared For - The 3 Year Burst!
I've sat in the pew many times and heard the Pastor say "be ready for results". "Expect God to work". In the Bible there is talk about preparing your fields for a harvest, or even sometimes in your prayer circles we pray "claiming victory in advance Lord". As much as I know these things I was not prepared for what happened last night. I shared a moment last night with Linda my mother, that can only be compared to times together 3 years ago. I'm calling this the 3 year burst.
What happened last night was freakishly similar to moments back in 2009. The settings and environment was 'just right' to have this moment almost like a 'soft try' or even better a simulation of our past and times spent... times in 2009.
Now during the past month of the treatment I have noticed and experienced improvements that literally take me back or 'rollback' to a year ago. Certain behaviors are happening today that have not happened in roughly a year. But nothing like the 3 year burst.
December 2010. Linda snapped out of her trance one time right around Christmas 2010. That day I interviewed her and asked her what this disease was like. Her explanation to me was that they are kind of buried in a foggy tunnel a deep tunnel. She actually drove to the store that day in the car by herself and bought breakfast groceries. I came downstairs to find everything on the table because she did not know how to put the eggs and milk in the refrigerator.
Since taking the shot I have been trying to get her to explain to me where she is at. Is she still in this tunnel? From her answers there seems to be this distant reality of where we are and where they are. The best description is this 'tunnel' effect.
The 3 Year Burst
Last night was like watching a Sci Fi movie. Ya know the one where the hero blazes back from across the galaxy from a secret mission to return to earth via a worm hole and the only thing the hero wants to do is EAT!!!
I think of Bruce Willis traveling back from a cryonic state and wanting protein and carbs in food form. Well last night I literally could not prepare or serve food fast enough for my mom. I made dinner (spaghetti with squash and eggplant) and sat her down in front of 'Dancing With The Stars' (her favorite show) and it was like she teleported back from 2009 or where ever she has been and literally knocked down 3 huge bowls of spaghetti. My mom has manners and is very lady like but there was nothing lady like about this. She was like a warrior back from battle with a one track mind. It was a full blown calorie dump. She was so back or out of the tunnel she was grabbing the fork to feed herself huge massive bites and I finally realised what was happening and just started feeding her as fast as I could. For the past month she has been feeding herself but I decided to do it instead because she was out of her trance and was starving.
Now I feed my mom 5-9 times a day for 7 months (this little lady could eat) but what made this different was the RAW desire and instinct to devour any and all food. It was great there was barely anything left for me after she went right back to sleep. She was relieved when I explained to her that I understood what was going on. BTW. What was totally wild was her ability to slurp and sip up the long noodles into her mouth. She literally was able to negotiate her lips in the exercise of reeling in noodles. This is from someone who was borderline a zombie a month ago. She did all this while crossing her legs at dinner and sitting up straight. While knocking down her water and coke AND watching 'Dancing With The Stars'. It was freakishly like 2009 when we lived in LA.
God is Good!
I've sat in the pew many times and heard the Pastor say "be ready for results". "Expect God to work". In the Bible there is talk about preparing your fields for a harvest, or even sometimes in your prayer circles we pray "claiming victory in advance Lord". As much as I know these things I was not prepared for what happened last night. I shared a moment last night with Linda my mother, that can only be compared to times together 3 years ago. I'm calling this the 3 year burst.
What happened last night was freakishly similar to moments back in 2009. The settings and environment was 'just right' to have this moment almost like a 'soft try' or even better a simulation of our past and times spent... times in 2009.
Now during the past month of the treatment I have noticed and experienced improvements that literally take me back or 'rollback' to a year ago. Certain behaviors are happening today that have not happened in roughly a year. But nothing like the 3 year burst.
December 2010. Linda snapped out of her trance one time right around Christmas 2010. That day I interviewed her and asked her what this disease was like. Her explanation to me was that they are kind of buried in a foggy tunnel a deep tunnel. She actually drove to the store that day in the car by herself and bought breakfast groceries. I came downstairs to find everything on the table because she did not know how to put the eggs and milk in the refrigerator.
Since taking the shot I have been trying to get her to explain to me where she is at. Is she still in this tunnel? From her answers there seems to be this distant reality of where we are and where they are. The best description is this 'tunnel' effect.
The 3 Year Burst
Last night was like watching a Sci Fi movie. Ya know the one where the hero blazes back from across the galaxy from a secret mission to return to earth via a worm hole and the only thing the hero wants to do is EAT!!!
I think of Bruce Willis traveling back from a cryonic state and wanting protein and carbs in food form. Well last night I literally could not prepare or serve food fast enough for my mom. I made dinner (spaghetti with squash and eggplant) and sat her down in front of 'Dancing With The Stars' (her favorite show) and it was like she teleported back from 2009 or where ever she has been and literally knocked down 3 huge bowls of spaghetti. My mom has manners and is very lady like but there was nothing lady like about this. She was like a warrior back from battle with a one track mind. It was a full blown calorie dump. She was so back or out of the tunnel she was grabbing the fork to feed herself huge massive bites and I finally realised what was happening and just started feeding her as fast as I could. For the past month she has been feeding herself but I decided to do it instead because she was out of her trance and was starving.
Now I feed my mom 5-9 times a day for 7 months (this little lady could eat) but what made this different was the RAW desire and instinct to devour any and all food. It was great there was barely anything left for me after she went right back to sleep. She was relieved when I explained to her that I understood what was going on. BTW. What was totally wild was her ability to slurp and sip up the long noodles into her mouth. She literally was able to negotiate her lips in the exercise of reeling in noodles. This is from someone who was borderline a zombie a month ago. She did all this while crossing her legs at dinner and sitting up straight. While knocking down her water and coke AND watching 'Dancing With The Stars'. It was freakishly like 2009 when we lived in LA.
God is Good!
Monday, May 7, 2012
Day 30 Mom Takes Her Own Meds
Day 30 Mom Takes Her Own Meds.
Monday morning when mom sat down for breakfast I placed her pills (other meds) on the table and she grabbed them, put them in her mouth and swallowed them while drinking her chocolate Boost shake. Last April I remember her having enough of her faculties to take meds and vitamins on her own.
Some things have been so long ago I am really having to think hard about when the last time they happened. It's kind of weird how you get in a caretaker mode and become so conditioned to 'routines' of care. Only now am I realising what we have both gone through this past year.
Praying she just keeps getting better :)
RS
Monday morning when mom sat down for breakfast I placed her pills (other meds) on the table and she grabbed them, put them in her mouth and swallowed them while drinking her chocolate Boost shake. Last April I remember her having enough of her faculties to take meds and vitamins on her own.
Some things have been so long ago I am really having to think hard about when the last time they happened. It's kind of weird how you get in a caretaker mode and become so conditioned to 'routines' of care. Only now am I realising what we have both gone through this past year.
Praying she just keeps getting better :)
RS
Saturday, May 5, 2012
New Improvements
New Improvements
Small improvements that I notice has mainly been moms ability to utilize her right hand to shift or hold things with both hands. Instead of putting things down with her left hand and repositioning she now will rely on her right hand to adjust.
Also she is now lifting cups to drink when she is thirsty. Before the cups sit stationary on the table and she moves her head towards the rim of the cup or the straw. She would normally try to drink from the rim of the cup 'with zero success' by moving her head. Now she literally picks up the cup to take a drink.
Last night I placed 3 items in front of her for dinner and she managed to negotiate all 3. I video taped this with my iphone. The last time I remember negotiating more than one thing at a time was March or April of 2011. Basically a year ago.
Small improvements that I notice has mainly been moms ability to utilize her right hand to shift or hold things with both hands. Instead of putting things down with her left hand and repositioning she now will rely on her right hand to adjust.
Also she is now lifting cups to drink when she is thirsty. Before the cups sit stationary on the table and she moves her head towards the rim of the cup or the straw. She would normally try to drink from the rim of the cup 'with zero success' by moving her head. Now she literally picks up the cup to take a drink.
Last night I placed 3 items in front of her for dinner and she managed to negotiate all 3. I video taped this with my iphone. The last time I remember negotiating more than one thing at a time was March or April of 2011. Basically a year ago.
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