Hi my name is kevin. I am 32 yrs old and have CP. It can be hard sometimes not having anyone to relate to and I wonder if anybody would like to chat to me regularly and make friends. After all a problem shared is a problem halved! It would be good for me to chat to others with the same problem and relate to them also because I find it hard to talk to anyone in my own family sometimes. I can walk to an extent but have a dislocation of the left hip. I have that "never say die" spirit and am currently doing Pilates which is helping me walk better. I use a wheelchair to an extent but am hopeful my hip can be done in the future. :) If anyone wants to chat just reply :)

Kevin.

Hi Kevin,
Healthboards is not a place for chat and other person to person communication like a one on one conversation. We can discuss things and provide information on various topics concerning CP here. I have Spasitc Diplegia CP from birth and I am 54. You are 32 and need someone to talk to? Try Yahoo Messenger or MSN Messenger for chatting. Write about happenings in your life related to your CP here. I assure you, we can all relate. Ask us and we will reply...

Hi Kevin,

Welcome to the healthboards! I would say we're all ears, but I think it's more like all eyes!
I am 39 and I have spastic CP (L hemiplegia). I can still chase my 7 yr. old around so I am doing rather well with the help of botox and a brace and a cane. I don't have a hip dislocation or anything like that butI do get enough pain in that area for about 10 people!

We can all relate to you here, so if you need any questions answered I am sure you will get plenty of answers!
I also admire those who can do pilates (with or without CP). I tried some basic moves and oh my goodness itwasn't pretty!

Gotta run, but very nice to meet you Kevin!

Lastramy

Thanks, Lastramy! I hope to start botox injections too soon. Its nice to meet others with the same problem. I have that "never say die" spirit and am hopeful for the future. I am doing well with the Pilates and the botox should be an added help. Nice to meet u too. Talk soon! kevin.

Kevin,

When (if I may ask) are you to receive your botox shots?? Do you know what muscles they will be injecting? I would love to hear what you think of the injections and how they work out for you, okay?

I have been getting my injections for over a year now. I just had the gastrocs, soleus, adductor,hamstring and hipflexors done. It's a lot and I sometimes get mixed results, but for the most part I have had quite a lot of benefit come from them too.

I don't think there are too many of us Cpers out there that don't have a "go get'em" attitude. We are having to keep pace in a very fast world so we have to take charge!

Do you do other things besides pilates for exercise? I have a gym membership that I need to get back into, but I also ride a mountain bike and I do a lot of walking every day.

Well, I will talk with you later then.

Lastramy

Hi Lastramy! I hope to start the injections after I have seen my consultant on the 30th August. You know, you're right, too many of us don't have that "go get em" attitude but I have! My physio will do an assessment of my muscles next week and do a report for the consultant. I am determined to make things work, to walk using crutches and get my hip done at some stage. I told my consultant-this is NOT a closed book and I DO NOT WANT it to be. If I can get more mobile and get the muscles working then it is possible. NO ONE gets off the hook with me and at least he is very interested in what I am embarking on and interested in my case. God keeps me going-I CAN DO IT!!! I also think the gym membership is good, maybe you can chat to an instructor and see what ypou can use to work the muscles that are injected with Botox. I will let you know how I get on. Nice talking to you. Bye the way what is your first name? and where do you come from?

Hi All:

I'm new here! I have been following the discussion on Botox..Does it really work??? I understand that it is quite expensive!! My particular diagnosis is Spastic Diplegia.

Does anyone have any helpful hints on exercise to reduce spasticity??? I am 32 and looking at turning over a new leaf as I've been too concerned with others' needs instead of my own.......any help/advice would be much appreciated!! I'm so glad there's a board like this!! : )

Cheers, gotta get back to work!!

Welcome crazychair,
it is always nice to take care of yourself once in a while. The main concerns about Botox besides the cost are:

Painful injections
Accuracy in hitting just the right areas with the shots is critical
Affects of Botox don't last long

Botox paralyses the target muscles/tendons so that they can be stretched and manipulated. The problem is, the muscles are controlled by damaged nerves. These nerves are still in control AFTER the Botox wears off...

I have Spastic Diplegia CP too. I had the spastic muscles of my legs released by surgeries long ago. Thank goodness the surgeries were mainly successful! I am 54...

crazychair,

Hey there! Yes I do believe that botox really works! I have been getting the injections every 3 mo. for over a year now. I started out just with the gastrocs (calf) to help with my foot dropping when I walked. I guess I should say I have spastic hemiplegia CP on left side.
Anyway, the foot dropping is less with the botox, I get better stretching as the muscles are weakened and therefore easier to manipulate. I even have gotten a return in muscle mass in that calf now that the muscles are able to perform more as they should. I now get the gastrocs, the hamstrings, the adductor magnus, and hipflexors all done. So here are my feelings:

Good issues:

I have more muscle mass
way better stretching
stiffness reduced
pain reduced
improved gait

bad issues:

not permanent, need repeated injections
some of the weakness can (at times) cause a lot of fatigue when I am up and about a lot.
doesn't necessarily work on everyone
need to find an experienced physician for injections

The botox is very expensive. My last office visit/shots cost about $700.
My insurance pays for the botox as it is not used for cosmetic purposes but in the treatment of spasticity.
I am never worried about how my injections are given. The doctor I get them from specializes in pediatric rehabilitation (being an adult I feel very awkward seeing a pediatrician) and he gives these injections on a regular basis.
Most of the times the injections are not any different than getting an immunization. Other times (I have had this done) the injections are given with electrostimulation so that the proper muscle group is targeted.
If the target muscles are not easily identified by the physician then the injection can be given under the guidance of ultrasound imaging.

I had a round in July and I will be back in for another in October. In all with all that I have done I get 6-10 injections each visit.
The effects of the botox usually for me start around day 3 post injection and hit a peak around 14 days. Things level off for a while and then the drug makes its way slowly out of the system for which I know because the stiffness returns and the foot starts flopping.

I hope this is helpful to you..........

Lastramy

Kevin,

Sorry to drop off like that on ya! I have been busy here. I am from Michigan and I prefer to just keep the name Lastramy on here.

I do hope everything is going well with you!

Lastramy

Hi Lastramy, We'll everything is an up-and-down battle but getting there. Things goingwell with Physio and the Pilates. Looking forward to starting the Botox injections soon.

C U
Kevin.

Kevin,

It is very nice to hear such an upbeat personality. I find that a lot of the CP people on this board are true fighters. Keep up the great work with the PT......what kind of things are you doing with that?
Pilates........I have to give you tons and tons of credit for that too!!!!

Keep me posted.

C U

Lastramy

Hi Lastramy! Yes, I do a lot with the Pilates and find I can walk taller and better. I suppose you have to fight all the time but it is all worth the effort. The muscles are a bit sore today but this is a good sign. Also I started Craniosacral therapy last week and that was relaxing. Hope consultant sees BIG improvement next week!

Keep up the fight!

Kevin.

Exercise is good :)

Kevin,

So you tried craniosacral therapy??? I am currious as to what you got out of that?? It was recommended to me, but so has a lot of other things and I only have so much money!
Have you ever tried the feldenkrais method of movement therapy?? I went to an initial consultation with someone and I liked what I saw but once again the pocketbook..........
I get regular massages and I love my massage therapist! She does me a world of good! Major fatigue relief!
Where did you say you were from Kevin??? If I may ask??

Yes I would say that some days are harderthan others but like you I hang on and keep trying. When are you scheduled for the botox???? Do you know which muscle groups they are targeting for you???

Well I must get more things done here..............glad you sent the email!
Talk to you again soon!

Lastramy

Hi Lastramy! I started the Craniosacral therapy last week. I felt relaxed during the session but this therapy focuses on the Craniosacral system working on the spine and head. I had been having the Bowen technique done and I also found this to be effective. Of course everything takes time but it is great that so many new therapies are there to help people with CP. I know the feeling re the money!!!! Yes it is hard and it is a pity that the powers-that-be don't realise that WE are saving them money in the long run by trying to beat our illness. I hope to get the leg muscles assessed to see which ones are tight and those are the ones which will be targeted. My left leg muscle is tight, due to the fact the hip is dislocated, but I hope to really come on once I get the injections.

Any way money aside, I will not give up because I really believe I can make real progress. Health and a good quality of life and happiness are more important than money even though at times it is hard.

I haven't tried the feldenkrais method of movement therapy. Think I have enough to do already!!!!!

I am from the Emerald Isle!

Kevin,

So will you be trying more cranial sacral therapy?? You feel relaxed you said, but how does this differ from a myofascial release massage. I know it targets the central nervous system, but does that mean that the tight muscles feel better?? What exactly does it do???
What is the bowen method if I may ask???

Yes I do agree. Sometimes your health and how you feel is more important than other things so we find the money to make our bodies feel better. Very true!

Okay now the Emerald Isle means 2 things to me:
1. Ireland
2. An area in North Carolina
Which one are you???

Is your CP in loth sides or just one?? Mine is restricted to the left leg and very very minimally to the left arm.

I like that upbeat personality you have there Kevin. :)

Take care, feel great, and have a wonderful day!

Lastramy

Hi lastramy! I am from Ireland. My CP is in both legs only and I use achair to get around but can walk to an extent. The Craniosacral therapy is relaxing and you feel tire after it. It made me feel better on myself and that can help the body too. The Bowen Techniqueis a hands-on method consisiting of gentle rolling movements across muscles, joints, lower spine and upper body area. This has worked well for me. In between each movement, the patient is left to relax or "cook" so that the body can adjust to the neurological changes. The stimulations are powerful and yield good results. It is a method that allows the body to heal itself ie you go into "Alpha State" and feel tired and sleepy. Indeed, it is not uncommon for patients to fall asleep during the session! Alpha state means the body goes into repair mode. I have found this very good my legs have straightened out more and I can walk taller and a bit more freely, thank God.

Glad you like my upbeat personality!!!! Guess it's part of the Irish charm(ha ha).

I am glad to be part of the healthboards because meeting people like yourself is a source of inpiration and encouragement to me!!!!!!

Thank you so much!

Have a great day too and keep the chin up!
Kevin.

Kevin,

Well my goodness, Ireland you say.............I was just about there last month. I was on a family vacation in London. I met a very special little friend of mine who also has CP and gets botox injections!
The countryside over there is just breathtaking, and I have heard of even better sitings in Ireland!

Well that bowen therapy sounds very interesting. And anything that has a calming effect is definitely right for me.

I made it out to the gym this evening after being out for a while. It felt good to get back into it. I ride the stationary bike, the treadmill, and the free weights. I had a personal trainer work out a program for me. My PT got involved and gave the trainer the do's and don'ts for my CP.
It works, but I would like to incorporate some work with the thera-bands.

Well Kevin I am glad you are here on the boards too. I think you can give a lot of people some great inspiration!

If I might ask, how has time been with your lower back?? I have lots of trouble there. I had a spinal epidural in the spring and it did a lot of good.
I take celebrex too.

Well I gotta scoot off here for now, but i will check back with you soon!
Take care Kevin!

Lastramy

Hi Lastramy :) Life is full of surpirises Eh? Yes, the scenery here in Ireland is breathtaking especially in the coastal and seaside areas :cool: I am glad you are going to the gym-I was going for a while but am down with depression at the moment but won't give up :) I hope to go to the gym when I am over this. Suffering can be hard-I've had the depression for 14months now and have taken tablets but they have made me worse. This has affected me physically and up until recently I had alot of pain in the muscles but the therapies have reaaly worked for me and things can only get better. God has a plan in this and it is BIG :angel: As for the lower back it has been tight and sometimes painful over the years but is loosening out now thanks to the bowen technique and my own efforts with the Pilates. :D I hope to go to Medjugorje soon and will pray for you and for all on the Boards :)

The future looks bright in spite of the problems :) Gotta dash-my PT is waiting to give me some more(relaxing) Craniosacral therapy :D

Kevin.