Disaboom freedomtocome Blog

Having a sit down conversation, all of us who has this Cp..

Freedomtocome — Wed, 26 Aug 2009 19:13:00 GMT

When I first started this blog, I believe one of my first enties was discussing how I went from walking to wheels(wheelchair), an as I read replies I could not find one person who said they went from walking to a wheelchair. I have to say I was a little surprised. Looking back on how I went from walking to a chair, many things come up. And if I could have a sit down conversation with others who has CP

One of those things is, how was their CP handled when they were childern? How do others deal with their CP now? for me it was when I did finally learn to walk at age four, I walked on my toes, this created a balance problem. Then at age seven, I had a heel cord tendon release, which let down my heels. . Walking now took some getting use to, I had spent years on my tip toes an now my feet were flat on the ground, but my muscles were still increadibly tight,so began the painful physical therapy. Stretching my muscles helped a gread deal, but it was hard for a seven year old to keep up with exercises that hurt, and wasn't much fun. As I got older, I did physical therapy off an on. Yet for me I had back problem also which I think also stemed from the CP.

Walking for me was painful after I would walk awhile the muscles in my hips and back would hurt so I would have to stop for a bit untill the muscles calmed down.

In my late 20's early thirties I started walking with a cane, and when I was sent to rehab, the staff there thought it would benifit me to use a chair. I slowly began using the chair, at first I didn't use it much at all, then more. I am not sure it was the wise thing to do using the chair, I guess I got lazy and tired of the fight. It can be said it would be better to do some exercies an stay out of the chair then to get in a chair an accept that as your life. I am not sure of either choice some days.

I don't know what the furture holds for me, but I hope it has freedom to come.

The replacement

Freedomtocome — Mon, 03 Aug 2009 11:56:00 GMT

One June 1st 2009 The surgery to replace my baclofen pump took place. This surgery began quiet differently then any of my previouse surgeries because this surgery was began with me being awake, an from the onset was ment to continue through out that way. Yet once the surgeion relized that because the pump had not only dislogded its self from its pouch but that it also had wedged its self deeply into my side. So now I has to be put under, and the surgery preformed while I was sleeping.

Now that my pump is once again in its place, The dosage defently needs increased substanctuly. My leg and hip mucsles are so very tight. One would not think that the dosage once again would have to began from the smallest dosage, at least it feels as though that is where my dosage is right now.

As I have been here at Disaboom I have not seen others who also has a Interthecal Balofen pump. So I do not have others experience to draw from. Yet I have found the support here absolutley inspiring and heart warming. I will be seeing my doctor in Sept. to have my pump medication increased, and so I will ask for a larger increase then what was orginally planned. I wonder if at some point the pump could help to make it possible for me to walk again?... time will tell.

Yet again with the Balofin Pump...

Freedomtocome — Sat, 16 May 2009 17:31:00 GMT

As I have stated before I have a baclofin pump. An yet again I am having problems with it. The pump has move out of its pouch and is moving freely about my side. An because of this I must not be getting all of baclofin my muscles need because my legs are so tight it is hard to dress and impossible to not dig my heels into the matress because my legs can't lay flat.

One would think, "ok easy fix, I'll just tell my surgion about the problem an he can place the pump back the way it needs to be. The surgion refuses to do anything, says the pump does not need moved. Another problem with the pump moving so freely is it makes it hard to refill the pump because finding the port (a small hole in the frount of the pump) on a moving target is quit difficult. So my only option I had was to discuss it with the doctor who refills the pump an he found a surgion who is willing to take a look at the pump. In the mean time...I try to find ways to cope with the tightness...

why I have been away

Freedomtocome — Sat, 16 May 2009 16:53:00 GMT

Hi everyone,

I am sorry I hav not gotten back here to update my blog or to see how everyone is doing but in Januarary I underwent major surgery on my spinal colum. I had to have spinal fusion surgery to my neck with pins an rods at C1 to C3. I am still healing from this surgery. Unfortantly it was a surgery I had to have, because if I did not have the surgery I would have been paralized from my neck down. As it was I was in pain an starting to show signs of danage to my spinal cord.

Now after the surgery it hs been a very slow healing process. Some of the side effects of the surery has been that parts of my left arm an hand is numb, with time this is slowly improving, I have lost a great deal of range of motion with my neck. My hands are weaker then before the surgery. I am told some of these side effects will go away with time an some will be perminate. Since it takes a year to heal completly from this surgery I just won't know what side effects will be perminate an which ones will go away with time.

Another aspect of the surgery is even though I have not had to wear any kind od neck brace after the surgery I have had to wear a bone growth stimulator. This device is suppose to do just as the name implies, stimulate the neck bones to grow back correctly. The device reminds me of a horse harness. It isn't uncomfortable just somewhat combersome, an time consuming, a full treatmeant lasts four hours.

I think the worst side effect for me has been the medications an their sideffects. One of the medications is skallaxon this helps with muscle tightness an movement, buth the main side effect is forgetfullness. This sideeffect has been huge for me, so much so I have had to stop taking this medication.

I know I really had no choice to have this surgery, but if it had been I had a choice I would have not had the surgery, it has been to hard,an I would have choosen to live in pain.

Well now you know why I have been away an I hope you will continue to follow my blog.

Take care all !

Ah Traveling...what a trip

Freedomtocome — Wed, 31 Dec 2008 04:50:00 GMT

First, I want to say thank you to all of those who answered my questions about traveling with a power chair. Secondly I want to apologies for not being able to read them until now. I especially want to thank Boedus and raimy and Finetoon not just for reading my bog but for being so helpful with their suggestions and ideas. Unfortantly I could not read them untill today.

How did the trip go, the trip all in all was just what I needed, time away and time with a wonderful friend. The purpose of the trip was to see my dear friend graduate nursing school. That in it's self was wonderful for me, but even more I was honored that my dear friend asked me to be the one who pinned her (a nursing pin is given to each graduate signifying completion of the nursing program)

I was so excited to be able to do this for her, and honored she asked me to be the one to do the pinning.

Now to answer the question I am sure you all are asking how did traveling work out with me and the power chair? over all it went better then the last time I traveled. Compared to were I live the accessability was so much better there were very few places I could not go, or obstacle I could not handle.

As for how my chair traveled with me..sigh. I so wish I could have read the replies to my biog. earlier. Even though traveling with my power chair was some what easier then last time. I still had the problem of it being loaded on to a small aircraft. Because I could not read the suggestions and information Fintoon left me I did not call the airlines ahead of time to explain to them that the chair does not come apart that, it can not fold or lay flat, and it would be best to ask me these questions before trying to load it instead of trying to load it onto the plane for a half hour then coming on board to ask me. All the while having disgruntled passengers upset because the plane isn't taking off on time. The larger plane did not have trouble loading the chair, they just had a hard time keeping track of the manual chair I also brought for all those places that I knew the power chair would not be able to go.

The unfortunate thing that did happen was the crew of the smaller aircraft did have trouble loading my power chair due to its size, so the did cause damage to the chair there are some scratches and the right arm of the chair will need to be replaced. But the airline has been most helpful they have sent me the paperwork to be filled out by the company I use to do repairs to my chair.

Even though there were these unfortunate incidents the trip as a whole using the power chair was really not that bad. The airline crew did their best and was very curtiuse, kind and helpful. The airline kept in contact with me when the manual chair was missing and when the power chair was damaged they were quick to call and send out all the necessary paper work.

I think it would be a wonderful idea if the airline companies would give courses to all their employees on what it is like for persons with disabilities to fly. Part of the course homework would be an assignment where the person must book a flight on their airline in a wheelchair/power chair. Why? because, one, those that design the plane could see how going down the aisles of the plane even in those small plane"wheelchairs" isn't the greatest comfort because you always, bumping those in their seats, and getting to the restroom, even though it can be done, it isn't without its problems. As for the other employers I think by taking the course they will have the experience. A experience that may serve them well in the future.

As for disabled travelers, doing our best to inform the airlines ahead of time of their impending travel and what kinds of special needs the person my have and what things the staff might be able do to make the flight, etc easier for all involved. Because we as travelers can not just assume airlines, buses, trains etc. to know what we as travelers need.

As I come to a close, I think of all the trips I hope to take in the future and of how much the information those here have given me will help not just me, but for those who will read here in the future, and I smile because I so hope this is the beginning of what I wanted this blog to be, helpful to others, and a place they can say hey I go through that to

freedomtocome

traveling help?

Freedomtocome — Mon, 01 Dec 2008 06:48:00 GMT

Hi everyone, I hope I am putting this in the right place. I have had trouble being able to post.

Soon I will be traveling by plane, and even though I have traveled by plane before with the powerchair,its just it has been about a year or so since I have traveled, so I was hoping to come here hoping to get advice on what the do's an don't of traveling with the chair, things that might make it easier, and things i might need to remember or just ideas to make this flight easier an more enjoyible.

One of the problems I had with the last trip was because my chair does not fold or have parts that detach. The bagage handlers tried forcing parts to detach from the powerchair which inturn caused those parts to no longer work properly.

So any suggestions you may have for this problem would be greatly appreciated.

Also suggestions you may have to make the trip more enjoyable..I would so be greatful for.

thank you

freedomtocome

Spasticity

Freedomtocome — Thu, 13 Nov 2008 00:34:00 GMT

As I said before, I have the baclofin pump. http://www.medtronic.com/ This has been a wonderful help to me.I would recomend it to anyone having spasticity problems. That said, I never thought this day would come. For a few months now, I have been feeling like I am going through withdraw from baclofin. (The withdraw symtoms are tingling, itching spasms drop in blood pressure, etc.) What is strange is, these symptomsonly happen every few weeks, or at least they did. Now I have symptoms of major spasticity.

When I needed a MRI,,my pump needed to be checked to make sure it was still operating correctly. Because my regular phsytrist is so far away, I went to a local nerologist. He checked my stiffness and seen how spastic I was an upped my does of baclofin in my pump. He also told me that I was on a pretty high does of baclofin, and that my body was geting use to the Baclofin, And my choices are either to be slowly weined off the pump, and start over., or continue increasing the dose.

Well I know I won't be able to get my dose increased much more, so I truely dread the time when I have to be weaned off the pump.

I wonder do others with spastic CP have their CP spasticity continue to increase?

Anyone?

To Name the Nameless...

Freedomtocome — Mon, 21 Jan 2008 03:05:00 GMT

Hi everyone...

I will tell you a little about myself. I am 39 years old with Diplegia or spastic cerebal palsy, that mostly effects my legs..but as I have gotten older (starting in my teens) it started effecting my back and hips and now stomach.( is this something that has happend to others as they have aged with CP?)

I am so glade to find this site! There really isn't any site that deal with everything like this one does,,and for me to find others with Cerebal Palsy,,and my age,,well it has been a life time of waiting.

I guess my story is quiet different from everyone elses who has Cerebral Palsy because I didn't even know had I had it till I was 32..

i was once again taking physical therapy to be able to move about and decrease pain, and I happend to ask a question of the physical therapist.I was once again taking physical therapy to be able to move about and decrease pain, and I happend to ask a question of the physical therapist.Why is it when you stretch my legs out, they won't stay that way, lose but if yours is stretched, they would stay that way? Therapist: replies: because Cerebral Palsy does that.

What?

I FINALLY, had a name for what was wrong with me!!!

I finally had a name to go with what had always been nameless.

This nameless thing that got me teased and physcally hurt, this thing that made me hurt for each climb, fight for each victory. This now had a name,... cerebral Palsy...

All my life, The reason I understood why it was hard for me to walk, the reason I fel so much, the reason I couldn't do things like others my age, was simply. I was premature.Well it was true I was premature, very premature. I was born on October 10th but I was'nt suppose to come into thw world untill the near end of Januaray. In 1968, that was a miracle., and still to this day it is considerd a miracle.for a baby to survive that premuture. So Now I set out on a hourney to learn what this Cerebral Palsy was and now that I knew what to call it,maybe..just maybe there was help.

The begining of that help came from my nerologist,Rageno. I had came to her office by way of my regular doctor. Who sent me to Rageno because of neck pain. But when I started having more and more pain, Dr. regeno thiought it was a good idea to start rehab. It seems things started falling into place, it even seemed at times that the universw wanted to help in my endevor. A example of this, is when Dr. regeno decided to send me to rehab.That same day the rehab nurse she knew had dropped by her office unannounced,since it was a rare thing that he was there at all ..it was even more strange he was there unanounced.

He came in and gave me a physical evaluation. all the while asking me questions of my health and what limitations i had, and what kinds of things were causeing me problems By this time I was either falling or catching myself to provent a fall. After the examination he decied I was a canidate for rehab and I will never forget his last commite to me.."now don't fall between now and and rehab" Three hourse later, I was in the back of ambulance, going to the hospital for seven stitches in the back of my head, ..because I fell backwards into my cement basement wall

rehab was a life changing experience, from the very begining.I was given a wheelchair because I was prone to falling,ButI had never sat down in a wheelchair even when I probably should have.I didn't want to give in,I wanted to fight.But the problem was, my body had fought so long, it hurt just to walk....to the point..I had gotten in Walmart and could not walk another step, there I was in the middle of the store, and I didn't know what to do.The cane wasnt helping, it became something else to pick up when I fell. After awhile, of pleading from the staff, and wanting things to be different. I sat down in the wheelchair, vowing it would be temparary

That was three years ago. Today I use my powerchair all the time.. I still wonder to this day, if I did the right thing in giving in to the pain and the failing and using the chair. I guess it doesn't help having doctors tell you Cp doesn't get worse, but now doctors are understanding that the lesions on the brain doesn't get worse but with time the effects of cp do change....and so does the health of the person who has it.