BS: Positive energy request

Subject: RE: BS: Positive energy request
From: Janie
Date: 05 Jun 10 - 05:54 PM

Indeed, Ron. Still holding all of you in my thoughts.

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 05 Jun 10 - 03:51 PM

As you know,we've had our share of hurdles these past few months.
I took my daughter,Shalisa, with me to a camping/musical event this past weekend.
Although she could not find her way back to our camp from the toilet,& has no recollection of the weekend;
She joined myself & a half dozen others in a round robin last Sunday night with her pennywhistles.
She impressed everyone there,especially with her improvisational ability.
Luckily,we've outfitted her with a digital recorder.

The little victories are the important ones.

Ron.

Subject: RE: BS: Positive energy request
From: gnu
Date: 22 Apr 10 - 05:26 PM

Keep the faith.

Subject: RE: BS: Positive energy request
From: Zany Mouse
Date: 22 Apr 10 - 12:43 PM

Only just caught up with this thread.

Positive thoughts from over the Pond.

Rhiannon

Subject: RE: BS: Positive energy request
From: Sandra in Sydney
Date: 22 Apr 10 - 09:36 AM

thanks for the report

sending more love & good wishes to you both

sandra

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 22 Apr 10 - 07:59 AM

I know how frustrated I get when I put my keys down and can't remember where five minutes later. Shalisa must find herself both frustrated and frightened.You are both on the permanent prayer list which seems to get longer and longer these days.
Stay strong, Ron.
Mary

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 22 Apr 10 - 07:09 AM

Thanks everyone.
Been busy lately trying to attain a semblance of normalcy in our lives.
We're heading into Philly for more testing today.
So far,all tests have proven negative.
This leaves us with a case of "we know what it's not" but still haven't identified the cause.
I suppose there's always the possibility that we'll never find out exactly what form of Leukodystrophy this is.
It's a managable level of frustration for us, and if Shalisa's attention is kept focused on other things,she seems to manage ok.

Still jumping through hoops,trying to get her disability benefits.
We've heard some real horror stories about the process.

I took Shalisa to my house in the mt's a couple of weeks ago.
She enjoyed being there but had no recollection of the visit by the time she got home.

Although there's been no signifigant improvement in Shalisa's condition,,it is at present,gotten no worse,& things are stable.

As we've learned throughout this ordeal,Recovery from brain injury is a long slow process.

I'm hoping in time to get Shalisa up to speed on her computer, enough to join in here at Mudcat.

Once again,I want to thank everyone for your support.

Ron.

Subject: RE: BS: Positive energy request
From: jacqui.c
Date: 21 Apr 10 - 07:10 PM

Good news - may it continue.

Subject: RE: BS: Positive energy request
From: catspaw49
Date: 21 Apr 10 - 06:59 PM

I am both happy and surprised to see you back so soon with good news! That you have much time of your own is amazing to me. May it keep on and get even better.

Spaw

Subject: RE: BS: Positive energy request
From: Peace
Date: 21 Apr 10 - 06:53 PM

Ron,

Hi to you and please say hello to Shalisa for me.

Bruce

Subject: RE: BS: Positive energy request
From: Sandra in Sydney
Date: 06 Apr 10 - 10:23 AM

ditto

Subject: RE: BS: Positive energy request
From: AllisonA(Animaterra)
Date: 02 Apr 10 - 08:27 PM

Thanks for the update, friend.

Subject: RE: BS: Positive energy request
From: gnu
Date: 02 Apr 10 - 08:17 PM

Hang in there. I wish I had more words.

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 02 Apr 10 - 07:43 AM

Hi all,just a brief update;
Shalisa is for the most part,stable at this time.
Some days the fatigue still gets the better of her,but the fact that it's not everyday is a sign of progress.
The neurologist has Shalisa on Aricept(sp?) now,to hopefully slow down any progression or future damage to her brain.

I've got Shalisa set up with her own computer now,with a set of written instructions tacked on the wall next to it.
As with everything these days,it's a slow relearning process,but she's doing ok.


Me;I'm doing alright.
Taking time for myself when I can.

Ron.

Subject: RE: BS: Positive energy request
From: KT
Date: 22 Mar 10 - 01:07 AM

Thinking of you, Dharmabum, and youdear daughter. Happy Birthday, Shalisa!

Subject: RE: BS: Positive energy request
From: kendall
Date: 21 Mar 10 - 08:28 PM

And a load of love from Maine.

Subject: RE: BS: Positive energy request
From: Sandra in Sydney
Date: 21 Mar 10 - 09:09 AM

sending birthday greetings from across the (big) pond!

sandra

Subject: RE: BS: Positive energy request
From: AllisonA(Animaterra)
Date: 21 Mar 10 - 08:29 AM

Happy birthday (tomorrow), Shalisa! Still holding you in love.

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 21 Mar 10 - 07:25 AM

I meant to say her b-day's on the 22nd.

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 21 Mar 10 - 07:23 AM

Thanks guys,
The testing went well.
Looks like that part's over for now.
Next neuro appt.in about 2 weeks.
Hopefully we'll get some answers then.

We held a birthday party for Shalisa yesterday.
She'll be 31 tomorrow. (21st)
There were a handfull of musicians there & she joined in with her pennywhistles for almost a solid 3 hours.

For Shalisa,it was great therapy.
For me,Heartwarming would be an understatement.

Ron.

Subject: RE: BS: Positive energy request
From: alanabit
Date: 20 Mar 10 - 03:40 PM

I have just read this Ron. Love from this household too. Why do good people have to deal with so much of this stuff? It sure sounds like you are up to it though. Thinking of you and Shalisa.

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 20 Mar 10 - 12:31 PM

How did the testing go? How is Shalisa doing? She is so young to have to go through this.
A bit hard on Dad too.
You are both still on the nightly Remember List.
Mary

Subject: RE: BS: Positive energy request
From: Sandra in Sydney
Date: 09 Mar 10 - 05:35 AM

definitely a busy week, but every bit of progress is excellent

sandra

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 08 Mar 10 - 12:31 PM

I'm ok Sins,thanks for asking.
I took Shalisa with me to visit my son & grandkids this weekend.
It tired her out a bit,but the social interaction did her well.

More tests in Philly tomorrow.

Brain injury support group Thurs.night.

Busy week.

Ron.

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 08 Mar 10 - 08:58 AM

Still thinking about you and Shalisa, Ron. How are you doing?
SINS

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 03 Mar 10 - 10:27 AM

Yes Sins,
We've been having her doing a variety of brain stimulating exercises.
Not so much as to bombard her with them,but as with everything else,in moderation.

Ron.

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 03 Mar 10 - 10:19 AM

Short term memory is returning - a huge step forward. Congratulations, Ron and Shalisa.
SINS


Ron, Have the doctors suggested any games like solitaire or scrabble to help exercise Shalisa's brain? Just a thought. There are free sites for playing games. I use King.com. You can play or compete for free.

Subject: RE: BS: Positive energy request
From: Janie
Date: 03 Mar 10 - 08:28 AM

That is good to hear!

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 03 Mar 10 - 07:40 AM

Sometimes we get so wrapped up in the big picture,the little things just slip past unnoticed.
It's not until the dust has settled a bit,that we realize how signifigant those "little things really are.
Example;
A month ago,Shalisa would repeat the same questions within a 5 minute span.
Last week,I noticed,she would start to repeat herself,stop,then state,"Oh yea,I've already asked you that,haven't I?"

I've made a point of pointing this out to her that this is a positive sign toward recovery.

Ron.

Subject: RE: BS: Positive energy request
From: GUEST,Regular guest poster
Date: 03 Mar 10 - 02:17 AM

Well, I'm in Quebec. Now, I'm goin' ta sleep. Hope you're well.

Me.

Subject: RE: BS: Positive energy request
From: GUEST,kendall
Date: 02 Mar 10 - 07:43 AM

Ron, I too hope to see you at Old Songs again. Having you camped nearby was a pleasure.

Subject: RE: BS: Positive energy request
From: AllisonA(Animaterra)
Date: 02 Mar 10 - 06:42 AM

Me, too...

Subject: RE: BS: Positive energy request
From: Sandra in Sydney
Date: 02 Mar 10 - 02:23 AM

sending more good wishes to Shalisa

sandra

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 01 Mar 10 - 08:05 PM

Thanks Jeri,
I hope to get back to O.S. one of these days.
It'd be nice to see you again also.

Ron.

Subject: RE: BS: Positive energy request
From: Jeri
Date: 01 Mar 10 - 06:48 PM

Ron, I'm sorry about this and I hope for the best for Shalisa.

I still have the lovely wood portrait of Rick that you made, and I miss seeing you at Old Songs. You're one of the good ones, and I'd love for good things to happen to you and yours.

Jeri

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 01 Mar 10 - 06:24 PM

Hi Sins,Sorry about your computer issues.

Shalisa had her second lumbar puncture (spinal tap)today.

All went well, She only experienced a small amount of discomfort.

Resting well now.

Ron.

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 01 Mar 10 - 11:01 AM

My computer is infected and refuses to produce anything but porn sites. Posting from work just to see how things are going.
Mary

Subject: RE: BS: Positive energy request
From: GUEST,Regular guest poster.
Date: 27 Feb 10 - 02:56 PM

Hi, Shalisa and Ron. Getting ready for the train--I love trains to travel by--and will be on-board in six hours. I will write to you both later in the coming week. I hope your weekend is wonderful and that the music is cookin'. Keep well both of you.

Later.

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 26 Feb 10 - 03:23 PM

Entrance to the Recovery Ward:
thread.cfm?threadid=126570&messages=286#2850108

Subject: RE: BS: Positive energy request
From: VirginiaTam
Date: 26 Feb 10 - 03:22 PM

I don't know you Dharmabum and as I haven't been on Mudcat all that long I guess not surprising.

But as a Mom who has gone through the ordeal of an ailing daughter with whom I used to sing, you have my understanding and best wishes.

As much positive energy (which is perpetually refilled here on Mudcat) as I have to give are yours and Shalisa's.

Subject: RE: BS: Positive energy request
From: SINSULL
Date: 26 Feb 10 - 03:19 PM

Shalisa,
When you feel up to it come take a room at the Mudcat Recovery Ward - a fairly zany place formally known as the Neil Young Center For The Terminally Screwed.
It is our Cyber Place for recovering from real world illnesses. Just watch out for Nurse Ratched, last seen with a needle the size of a harpoon and an attitude to match. Let me know your favorite colors and I will design a room there for you.
Mary

Subject: RE: BS: Positive energy request
From: GUEST,Regular guest poster
Date: 26 Feb 10 - 03:06 PM

Hi, Shalisa. I wanted you to know that I'll be out of touch because I'm moving to a different province in Canada. I will be keeping you in my prayers. By the way, I sent a small present to you. It is in today's mail--but knowing the post office as I do it could take about ten days to reach you. I wanted to let you know that all of us on Mudcat are really 'pulling' for you. If you get a chance in the next while, would you be kind enough to tell us what kind of music you like?

I'll be back in touch as soon as I can.

Subject: RE: BS: Positive energy request
From: Sandra in Sydney
Date: 26 Feb 10 - 08:30 AM

Gidday Shalisa

I hope you & your Dad have a great musical day

sandra

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 26 Feb 10 - 08:13 AM

I just whish I had the time to PM each of you.

For now just know we're grateful beyond words for your support.

Ron.

Subject: RE: BS: Positive energy request
From: GUEST,Regular guest poster.
Date: 26 Feb 10 - 02:53 AM

Dear Shalisa,

I want you to know that my daughter went through and still goes through some of what you are having to deal with. She has the best memory of anyone I know. I'm pretty old now, and sometimes I forget what I went looking for because by the time I get there to get whatever is, my memory of it is gone. Drives me "mucho loco" sometimes.

I am happy that you and your dad get to do so much together. I'll tell you right now, he loves you and really admires you for the great effort you are making. Please, be proud of yourself. We have an expression we use in firefighting: NO ONE is unimportant on a fire scene. Well, no effort you make is wasted. We all think you're pretty wonderful. Keep believing and keep trying.

Subject: RE: BS: Positive energy request
From: Stilly River Sage
Date: 25 Feb 10 - 11:17 AM

Ron,

We had a shock about 4 years ago when my daughter was hospitalized and needed a couple of units transfusion. The nurse in the ER commented that "they'll probably need to call an oncologist." That sent us into a true tailspin. We learned in the next couple of days that all hematologists are also oncologists, though not all oncologists are hematologists. That little omission, when the nurse first uttered the word "oncologist," gave us a couple of really bad days and nights. The nurse should have been more careful in how she termed that remark, because it was like a sentence of death before a diagnosis had even been reached.

My daughter's problem was diagnosed, a surgery performed to deal with it. Choices were made, but it took a lot of research on my part to help us decide what needed to be done.

If you come up with technical terms that you need some help with, I work in a library with a nursing school and a lot of subscription medical databases. If you need any research, send a PM and give me the term and I can probably send you PDFs of articles or citations for you to read* or share with your doctors.

*You can scare yourself shitless reading some of these without a medical background, so I'm not offering this casually. If you think any of these searches would help, let me know, but I understand if it is too much information. And before you send me a PM, run those key words through the database at National Institutes of Health (NIH). And research receiving federal funding must by law be published. And you are entitled to take a look at this along with your doctors.

Good luck. I hope the Mudcat community can help you in many ways.

SRS

Subject: RE: BS: Positive energy request
From: Dharmabum
Date: 25 Feb 10 - 10:19 AM

I've printed out your responses & Shalisa's been reading them.
To say that she's been touched by each & every one of them would be an understatement.

At this time,even the daily routine tasks,from getting dressed,making breakfast,to doing laundry,are all considered part of her therapy. Though she does need someone to remind her of the task at hand right now.

You know how we all from time to time,will walk into a room & forget what it was that we were looking for,or what we were there to do?
Well,that's Shalisa's life is right now.
And repetition is a very important part in the retraining of her brain.

Shalisa's reading your posts,& re reading them,over & over.
Because she can't remember reading them the first time.

Again,repetition = good.

The thing that's important for each of you to remember,is that every time she reads one of your notes,it triggers an emotional response in her.
I have to believe that every one of those "emotional responses" puts her that much closer to knocking another piece of the puzzle back into place.

So,to each of you, I want you to know,(and I wish I could word this more eloquently)there is a very tangible result from your actions.

We're getting hammered with yet another snowstorm today.
Good day for Shalisa & I to play some tunes.

Later,Ron.

Subject: RE: BS: Positive energy request
From: Morticia
Date: 25 Feb 10 - 03:55 AM

You've got it from me

Subject: RE: BS: Positive energy request
From: KT
Date: 25 Feb 10 - 03:52 AM

Just on the cat for the first time today, and just now finding this. I'm joining those who've offered good thoughts and prayers for you and your daughter, Ron. Holding you both in light~KT

Subject: RE: BS: Positive energy request
From: open mike
Date: 25 Feb 10 - 02:39 AM

THANKS FOR SHARING THIS WITH US...what a scary thing this is..
i am so glad to hear that you have a musical connection with your girl.
I have a daughter about that same age, and am sending you healing wishes for the best outcome. keep the music going, and keep us posted.