Thoughts

Boy, it's so easy to go over to the other side....

thinking of the things that Paul can no longer do.

I try like hell to stop myself...fast.

It is so important to focus on the things he can do...and things that he

couldn't do but can do now.

Even the little things...such as swallowing.

When you can't swallow....you sure as hell don't look at it as a little thing.

He is now a grand swallower.

Every once in awhile when he is exhausted he may have one tiny drool. Like the drool I let loose in college as I concentrated so hard to play my first piano piece,

Twinkle, Twinkle Little Star.

My friend Sue sat at the piano in front of me playing Bach...she turned to say something to me..........and bingo a drool.

Paul & I still have a laugh over that one!

Paul can walk....not a real march...yet....but assisted he can make it into rehab, Dr's offices and most importantly Gourmet Cafe and Montville Inn.

Link to Gourmet Cafe.

Link to Montville Inn.

Food is important....having a meal with friends is really important. Paul scores an A+ in the eating department.

The kids are coming in a few weeks so I suggested to Paul that we should take them to the shore...he howled as if to say "right...and I'm gonna crawl through the sand". I laughed with him then explained that we'd love the drive and we could go to the beach and sit on the wooden walkway or take a drive while the kids enjoyed the sand.

I just can't begin to imagine how it must feel to be in his situation. I'm sure he has hope...hope that he will improve. Improve enough to have a chance for one more walk on the beach...one more time to pick up driftwood...seashells....a favorite rock....stand at the edge of the earth and feel that might pull of water.

We also play this odd morbid game....we think of someone that we know that is in a worse situation. Then we can stop feeling as if we have it so bad. We know a young man that can't eat by himself or walk....but he can talk and read. I asked Paul if he'd rather give up walking to be able to talk and read. He thought for a moment and shook his head. I'm sure that part of him knows he can handle his own situation...but he's not sure how he'd handle a different situation.

Last week when we went to the Kessler West Orange to see Dr. Barrett we saw so many people with incredible challenges....wow that is the place to go if you are feeling sorry for yourself.

A good friend also pointed out something very interesting. He said that when he was a kid his Mom had a living will...."if 'this' happens or 'that', I don't want to survive...blah...blah...blah..." Well, 'this and that' did happen and guess what...she didn't want to give up. She realized that other things about life were pretty damn good...she wasn't ready to let go.
I remember Paul and I having a similar discussion...eyesight and reading were involved in the 'not wanting to live' category. Guess what......Paul definitely isn't ready to call it quits. I'm sure it's different for everyone...............
I'm also trying to have him look ahead....plan trips. We have some time paid for in Mendocino. It's not impossible...just not yet.....

It's late at night...time for me to turn in....this is the time I am most vulnerable....night thoughts.
I think of all the wonderful things we've done...how game Paul was to go anywhere...anytime.
I just don't want him to be sad....I just want him to be happy.
I just want to make some more really happy memories!!

Love to all...........sleep tight!

Thanks for your patience...

I'm still working away on all the Thank You cards....
I only have a few minutes at the end of long days....usually when we sit
down at the end of the day and watch some sort of BBC show....Foyle's War and
Lovejoy....happen to be two of the series we're working our way through.
I just want all of you to know how much we appreciate your support!!

Saturday...a work day

Earlier today we did some therapy sessions.
Paul really has improved on the 'matching card game'.
I think the toughest part of the card game
is his loss of vision...he really has to bear down and remember to look to his right.
He also did some writing...both printing and cursive,
Counting and indentifying of numbers,
and vocal games.
100%
That is really terrific!
Better than before the seizure...whew....relief here!!

Today Paul is sorting through boxes in the kitchen.
He just started to go through boxes of paperwork/books etc.
I asked him if he could read any of it...."no". Hmmm, I said...I think you reading more than you
realize...how do you know what you want to keep and what to toss?

I have a homemade variation of lemon bars in the oven.
Decided to find out how lime-coconut would taste in place of the lemon juice.
I'll let you know.
(Of course I decided to bake on one of the warmer days....Paul never called me 'bright Linda')

I still hear Paul on the monitor sorting....opps,
just heard the timer go off!!
Happy Saturday to you!!

Two weeks in limbo...

The last two weeks...from June 1oth...have been difficult!
We're just starting to see through the setbacks.
In fact...Paul is coming along....again.
I think he is afraid to hope....hope that he will continue on a
clear path.
We have seen three Doctors this week and consulted with a fourth.
It looks as if Keppra will be the drug of choice for seizure control.
Evidently, having a seizure this far removed from the strokes is a pretty good
indication that Paul would have other seizures.
So seizure medication it is.
Here's the deal....it will take at least a month to switch drugs.
(See above for the directions...seriously these are the directions!...No I didn't destroy the directions.....)
Yep, even though he has only been on the other drug for a few weeks.
AND...there is a chance that during the switch he may have another seizure.
But, the side effects of Dilantin...in the long run...are more severe than Keppra.
Why didn't the doctors start him on Keppra to begin?
Dilantin is an EASIER drug to monitor....easier to start a regimen.
My head is spinning.
But, I am so grateful that the doctors that we called on this week were very informative, warm and encouraging!
Wish Paul luck...as he jumps into this switch.
Wish us strength & wisdom to continue to make the best choices.

We are so ready for some normalcy...some feeling of stability...some fun!!
It was so good to hear Paul laugh out loud yesterday.

There is something that is very encouraging....he is starting to be able to follow verbal directions for speech activities. I usually try to do some verbal exercises as we drive to rehab. In the past it was not working.
But yesterday.......it really took hold. In fact, he was so excited that he wanted to continue working while we were waiting for Dr. Barrett.
It will really help for him to be able to give me a clear verbal 'yes' & 'no'....especially while we are driving. He always asks me questions and hasn't been able to SAY yes or no....he shakes his head. Well...you try to drive and look to your right!!
Not good!

#41

I can take it.......

Early Father's Day....

(click on imagine to enlarge)

Boy do I miss the kids..........
Heather sent an early Father's Day card. She's in nursing school (Top of class) and won't finish up til August of next year....Dean, the Colonel as Paul calls him, turned two in February. Steve (not in photo)...won Best of Show in the Son-in-Law category for the last several years.
Nathan and Sabrina...I miss my big bear son....and dear sweet Sabrina.
Sarah & Natasha the wonder girls in California....and Mike...congrats on cooking school graduation.

A quick ps:
Today Paul seems a lot better re: the drowsiness. He's a little down..put hey...a day in the dumps is a normal thing.....considering what his 'normal' is now!

Back in the saddle......

Once again.....or is is 6th again....Paul pulled himself together
and headed back to Kessler in the silver stead with the Flaming Redhead at the wheel.
I've taken on Paul's driving tendencies...it makes him chuckle.
I really have to thank everyone that came together to offer us support....I know I couldn't do it without you....and if I collapse...Paul goes down.
The Kessler staff didn't skip a beat...and within a couple hours Paul was joking around.
Then Paul hit PT and Aaron gave him a round of encouragement.
He told Paul that he hasn't lost any strength..in fact he did better in a few of the drills.
(Paul had been working so hard for the last few weeks to strengthen his hip flexors)
Aaron just feels that Paul is exhausted and will rebound within a few days....that little talk really made a difference!!
That and the fact that Beth came sailing in with a kiss and a wish!!

Tomorrow....Katherine comes for a speech session...and more encouragement!!

Thank God for all of you and everyone that wrote a quick note...you helped me to sit up straight and take it on the chin.....AGAIN!!

PS CONGRATULATIONS to Aaron...Kessler employee of the month!!

Another blow....

The last few weeks we were really on a roll!
Paul was making great progress...we were beginning to return to some activities....dinner with friends...casual Sundays...hard work at rehab during the week.

We had even made an important decision....we were going to put off our trip to the University of Michigan. We made that decision based on several reasons.
The main reason?
The therapy he's receiving here in NJ.
Paul was doing extremely well in Physical Therapy and we were going to start a new therapy in OT, restraint therapy. Katherine Gallagher was going to come an additional day for speech and Pam had started Paul on a new Speech Therapy at Kessler..PROMPT.
Things were starting to come together!!
We thought that staying on track here in Jersey was a great idea. Plus the fact that the aphasia program at the University of Michigan runs every 6 weeks...so we can go at a later date.

Well....on Wednesday as we were getting ready for Kessler.....Paul had a seizure.
At first I thought Paul was faking.
Yes, for years, Paul thought it was funny to gasp and fake.
It took me ten seconds before I really believed what was happening. Then I had to figure out if he were choking or having a seizure. I started to get him in the position for a Heimlich Maneuver...then I realized that he was breathing and that it was a seizure.
I called 911.
Paul then stopped seizing and fell into a very deep sleep with loud snoring sounds.
So I knew he was breathing.
I ran upstairs to open the doors and to put pants on.
The team arrived within 2 minutes....and off to St. Clair's for round four....is is round four?...no...round five!!

Holy shit..how much can a body take?

It was a really scary time waiting to see how Paul came through the seizure!
He seemed fine...same as he was prior to the seizure.
In the ER I told him that he looked great! He sneered...I knew he was thinking..."Yah, just as normal as...""what the hell is NORMAL""?
All tests came back and all the geniuses believe that Paul had a seizure as a result of scar tissue from the stokes.
It is not unusual.
(Just wish I had been given a heads up re: siezures.)

Now...the not so nice part.
Paul will have to be on anti-seizure medication.
Dilantin.
After talking to 4 doctors, we thought that it was the route to take.
Paul wants to continue his therapy...and stay as aggressive physically. If he doesn't take medication the possibility of another seizure is high. If he has a seizure while walking he would have a great chance of falling.
And falling at 76 on Coumadin is an absolute nightmare.

Side effects of Dilantin....there are some not so wonderful things to worry about and watch....and then there is a very upsetting one. Slowing of motor skills.
So let's see....Paul wants to continue working hard....but now he faces slowing of motor skills....that and he's very sleepy.
I went back to the drawing board and contacted more Doctors...Pharmacists...nurses....even a close friend that is a Veterinarian. (Vets I believe have a greater sense of medical care than MANY medical Dotors...that and the fact that Vet school is tremendously harder to get into!)
Ok...back to my point.
"How is this better for Paul..if he is groggy and sluggish how will he be able to advance is therapy?"
Everyone one I talked to that knew anything about anti-seizure medication told us to wait it out...give it a week...10 days...body will adjust and he should come back to his NORMAL.
So now...we wait!!
Paul returns to Kessler tomorrow morning...and I once again pray that he doesn't get another boot in the face as he tries to climb the ladder again!

Please if you have any breath left to once again send us good vibes, prayers, feng shui...we would be most grateful!!