Whats been happening?

Sorry it been awhile

Nothing really been happening with my arm of late.

Rehab is going nowhere and I've even put my evil WHO(Wrist,Hand Orthsis) back on.Which when its on I cant use my hand at all. But at least the wrist is less painful.

Begurling accepted the fact that a gutter/platform walkers/crutches will be the piece of equipment I need to moblise with support.

Physio doesn't think I will make an real improvements so is going to write a home program and I will see him 3 monthly for changes etc.                                                                               http://cdn.content.sweetim.com/sim/cpie/emoticons/00020344.gif

Botox Monkey has put me on 6 monthly injections so I don't see the point, I'll discuss a wrist fusion with him next week.

I do get functional gains out of the upper arm injections so I'm wanting to contunie those

Wanting treatment for my shoulder and elbow contractors as I use my elbow/shoulder to carry stuff.

I will update you on how my appointment goes
 

I've had enough

The time has come to accept the reality I DO NOT the best rehab team because of the way I see the world 

And as such I must return to finding joy in picking splint colours , using special wheelchairs, mastering a keyboard that isn't repairable when breaks 

The list is heartbreaking  long hopefully with nureolonligical programming(modern name for brainwashing) the list will  become less heartbreaking 

Hopefully my Botox Dr will agree to keep me comfortable till the arm relaxes in the splints 

There's a lot of pt that will make my life easier that we can focus on.After a we master swing thou on a "your hands are fcuked" walker ill use my rehab hour to move upright for the sake of it 

Pt's lazy

He's saying he can't ask for my records 

So I went to my GP's receptionist who was like yes he can and I can't really give you the records because he's asked for them. He's meant to do it himself.

So I'm not happy with him  

The finger splints he ordered didn't fit

Went to the Gp on Tuesday re stabbing pains in my right shoulder on Saturday while having in the shower (I wash my good arm with my bad arm)

I also brought up the issue of Nureosurgey not receiving my Rhiztomy referral from my Botox Dr. At which point my GP agrees to write to Hospital Management about my lack of a Rehabilitation Team and fact I desperately need a rehab review and plan. Which was music to my ears .



full credit goes too

Because my face lit up he warned me that the review could say that rehabilitation services are not producing enough results to justify the cost of services. While that is a risk I believe a review is the correct and necessary next step.  Because I know of  patients who state honsently that after 17 years of Botox every 3 months they see no improvement in their upper limb. Which I find scary to think about.







Full credit goes too

Pt was good we tried some finger splints that didnt fit (he ordered wrong size) or they wouldn't hold the index finger bent enough that it would be useful for typing.  So I asked if he had seen this post then he admitted he doesn't read the blog. Agreed that this type of splint would work best and then started to draw an outline of a splint design based on that photo.

Then we repeat the same excirses we did last week again and commented I was doing them better

Full credit goes too

Then the receptionist told me hes away next Tuesday and can't do next Thursday. Upside is I can go to student assocation Pubcrawl. Don't worry I'm NOT drinking.

At the OT assessment for course today I was informed that Support Funds(vocational rehab) would more than likely cover the cost of the splint as its needed for study. Yay!!!



 Follow my experiences as a moderate needs student here

 

PT is coming along nicely

                                                      Had a good pt session today 

We worked on kneeling today did lots of this with him assisting my arm to stay in positing

full credit for this image goes too

 Using a foam mat, my knee separator( http://www.dme.co.nz/productDetails.aspx?ProductID=321)

full credit for this image goes to

 And a gym ball(I'm still not sure I like those things-after conducive education mum choose bobath)

After my pt had my right forearm screaming abuse at me and my left tricep doing the same. He asked what I thought about using a round foam disk thingie was doing to the weight transfer exercise we were doing umm I'm in an amount of pain that means I can't notice and I told him so

Then I had sign language class

And yea he was sick last week

Pt cancelled

My pt cancelled. For his sake I hope he's sick otherwise I will be buying a piece of drain pipe to beat him with.

As this cancellation means that my rehabilitation programme has been majorly delayed by a week as we were meant to building a typing splint(to get me typing with my right index finger at the same time as my left hand) which UCOL is waiting(they have an Egro keyboard that I can use) for.

Crawling and why I do it

There's a cross post from Facebook 

I have an interest(I have an understanding of neuroplastic theory and think its an appropriate to use in this situation) in learning to bunnyhop crawl to assist in weightbearing through my arms which is needed for swing thru crutching(http://www.youtube.com/watch?v=6WENkQOAKbs).

Here are some links of what  I use and why:

http://www.dme.co.nz/productDetails.aspx?ProductID=321 (I use this at the moment not posisted at my knees when I'm crawling but at the top of shins)

http://hb3.seikyou.ne.jp/home/t-matsu2/E.p1.ch2.4.html(An interesting artcle on CP crawling)

PT goals set

PT went well yesterday

Arrived in a "this is never going to end" mood and left feeling brighter

Hes spoken to a co-worker who has worked alot in CP.Now he has calmed down about splints
 

Then we set some goals:

 

• Full fuction(can you break that down)
• SO

• Shoe tying(was most complex movement I could think of at the time)
• Two handed(I touch type using the FGHJ home-row at the moment 17 wpm) touch typing

• 

  

  Full credit for the image goes

  Swing thru crutch gait as opposite to sitting in a chair

                       HOMEWORK(oh JOY!!! I hate PT homework)

 

•  Type using my Botox straighten index finger for Backspace,Enter,Shift,Space
• Going to UCOL Disability Services if they have one of these:

                                                    Full credit belongs here

 

 
 

 



 

Full credit for this image

                      Plan for next week:

• Build a typing splint for my index finger
• Work on pre crawling skills as part of the journey to Swing thru(see Crawling post for more info)

My powerchair equals functional indepentance

Broken powerchair cant stop me

Early Saturday morning my powerchair charger went 

 http://www.123rf.com/photo_14973332_cartoon--boom-comic-book-explosion.html

On Sunday I needed to go to the mall and it was a reality check re how much rehab I still have to do

I have got used to hi-lo seating and am now not really keen on non hi-lo seating/standing chairs so yea

Views on tendon lengthing and rhiztomy

Here are my views(and why) take them with a grain of salt

Without Selective Cerival Rhiztomy: A waste of time that must be repeated along with the recovery process every 5 years(no WAY and no thanks)

 

 

With successful Selective Cerival Rhiztomy: A must have.They compliment each other very well and are normally recommended by the Rhiztomy surgeon. 

 

                              What is Rhiztomy?

 

Here is a good doc on what Rhiztomy for the legs(same surgery process for the arms I believe, I maybe wrong) is:

 

 

What is tendon lengthing?

 

Surgeries to lengthen the Achilles tendon include percutaneous tendon lengthening, Z-plasty lengthening and Gastrocnemius recession. In percutaneous lengthening, the surgeon cuts the tendon in several spots until it tears into a longer configuration. Z-plasty lengthening allows the surgeon to stretch the tendon by first making a Z-shaped cut in it. A Gastocnemius recession, which simply loosens the the muscle fibers attached to the tendon, may suffice for milder cases.

Read more: http://www.ehow.com/about_5701950_achilles-tendon-lengthening-procedures.html#ixzz2a89I1zC6

 

Here is a good artcle about the varieties types of lengthening and risks and the like

 

I REFUSE to have my Achilles done as I think over use of nueroplasticity(reason why I don't walk by CHOICE) leads to retardation(its a medical term, used in a medical context 

get over R-word haters)

 

 

 

1st PT session after Botox this time

Here are the highlights

• Arm ramdomly going into supnation is a good thing
• DMOs look to good to true.Can't say I disagree with him-Side note the seating OT wants to re measure me for it in the next clinic waiting for an appointment card
• Will write a letter to my GP stating HE is WANTING the splints(indivdual finger,wrist brace, and elbow brace)
• Agreed with my view that surgery is the only real way to deal with tendon shortness/swan necking of the fingers
• Didn't know if inpatient CIMT is still being at the local hospital nureo rehab ward(I'm wanting to do a full month program up there in janurany when I don't have classes)

Amazing gym session

party time cartoon
full credit for the image

My arm stayed supnated how it was meant the whole session with a support worker supporting the arm at the eithier the elbow or shoulder the whole time and also keeping those pesky fingers closed round equipment as well


 

Sign langage has part of my rehab program

I have started NZSL classes thou CCS(a community based disability support agency) to asst with my rehab and learn another language



It seems to be working

Here's some blogs about signing after ped brain damage

http://cpcare.org/kids-with-cerebral-palsy-can-learn-how-to-use-asl/

The blog that inspired me
"We probably would not have guessed that through her will to communicate, Lucy would develop fine motor skills that professionals deemed impossible for a child with cerebral palsy. - See more at: http://www.rachelcoleman.com/lucys-story/#sthash.z6JFRB5O.dpuf

and

She uses a manual wheelchair and a power chair. She still signs beautifully and speaks clearly as well. Leah was the inspiration for “Signing Time!” and Lucy opened my eyes, showing me that sign language is indeed for EVERY child of EVERY ability. - See more at: http://www.rachelcoleman.com/lucys-story/#sthash.z6JFRB5O.dpuf


Heres a class just for CP families


I love Voice Thru Your Hands

They are organization set up because the founder's has Down Syndrome and is also Deaf.So they really D/deaf with additional needs or hearing with a speech impairment so needs to be able say "Wheres the ball?

 

Sign                                               cool

 

In NZSL there are no connecting words that's one the things make it a language and not a way disabled communicate because they can't speak

My rehab wheelchair at the moment

My rehab chair is a

One arm drive manual chair 

( I have nothing to do with the making of this video)

I dont have a Tilite chair I have Melrose stallion(http://www.melrosechairs.co.nz/custommade/stallion.html) aka heavy hospital crap

Here are the rehab parts of the chair:

I use this wheelchair in the evenings as part of my home therapy program.My main day chair is a Invacare TDX SP(http://www.invacare.co.nz/index.cfm/1,134,710,33,html/TDX-SP) with evelating seating which Grandad paid as we can only have one seating funded through the health system in NZ

Downsides of the armrest  is the Otto Bock clamps break alot but health system do replace them

Botox

Went ok minus the "PT too expensive" meltdown at the beginning

Sadly I have been sick and had to miss  both the gym and PT on tuesday. I have appointments booked for next week.

My nuero gave me the whole rhiztomy(http://www.ehow.com/about_5486053_cervical-rhizotomy.html)" is radical surgery speech
yea I know that
but at least he acting like he knows what it is now

Outcomes so far are(will edit with more):

I can use my index finger to press function keys on the qwerty keyboard

Sorry

Its been ages

Here a quick recap

• My support worker at the gym left and wasnt replaced for over a month and now has been
• Got my sh@t together re a private and have been going for a couple of weeks
• Started using my rehab chair every night and my new PT is impressed with the results
• Seating clinic went well was measured for a http://www.dmorthotics.com/products/dmo/dynamic-movement-gloves.php at the clinic which was odd
• PT has written a letter to botox Dr re botox and will have  it next week and update then

Personal trainer sorted now gotta sort the nurse

I went to the second PT session and he was great.

Sorry I won't share my program here

I went to the session in my manual chair cos it suited me I showed a friend of my the hill climbers on the way there

So we when to the first just us session

And she freaked out that I would fall out of my chair when I did my SM workout(I think the answer is to turn the chair off and put it in manual)

On the subject of falls I fall twice since my carer has been sick

1. Was doing a bed to wc transfer and landed on my cushion not a biggie but I landed on my better arm and she couldnt get me back to sitting up

2. was doing a slide transfer from bathroom bench to my wc and landed through my  chair the carer (requested I put my hill climbers) pulls me back which has lead to a"nice"bright blue bruise.COW

Been to the gym

OK I had my first personal training (non) session

What happened?

• The guy who booked my session didn't note my cerebral palsy or the fact I have a support worker so the poor personal trainer had no idea what he was doing 
• Waste of time he will go away and do some research and I thus meaning I wasted $17.50 paying for a week that I'm not aloud to use the gym.

Booked in for this Tuesday and will blog about it 

Been to the doctor

So we agree on the following:

• Tendon release success rate is almost zero so whats the point 
• My counselling is coming to end and as  all the free counselling services will have time limits whats the point umm ok I guess I will go back to writing about my feelings which 1 day I hope to make money off(sorry I'm in a selfish mood)

Whats going on

Had botox on the 14th in my elbow flexes and thumb and index finger

Finally had a Doctor agree I have a small level of contraction of the elbow YAY!!!

• So I asked for a referral to an othopendick surgeon when I discovered my doctor has selective hearing
• Went to the youth health clinic got fobbed off onto the nurse who cant write the referral so after taking some notes and promising me she will get the Dr to write the referral-will keep you posted on that 1

My physio will see me on the 28th. My support worker and I are hoping she will write a letter to NASC stating that I need an increase in home support hours for physio- again I will keep you posted.

Muscles I plan on getting next time(april)

• More in thumb and index finger
• Same level in my elbow hoping to have seen a surgeon but not execpting that be the case
• Been seen by someone whos imparly about my shoulder(and maybe some Botox in my shoulder)