Hi i am a new member and am desperate for some advice i have a daughter aged 13 with cp. Over the last 2 years she has been having shakes in the night, she has been under the hospital for this. Over the last 6 months the situation has got worse and she is now having shakes before she goes to sleep while she is a sleep and first thing in the mornings plus wetting the bed. Hospital says after many tests it is not epilepsy but are puzzled on what it can be, can any one help.

Hi Chloe,
Don't know if it's any help but my daughter who's 7 does some funny little "shivers/ jerks" with her legs. She has athetoid/ dystonic CP. I figure it's some kind of "surge" or fluctuation in her muscle tone as she's going through a growth spurt.
She also did some funny springing jerky movements with her arms when about 4-8 months old (someone on the site told me what they were called but I can't remember, again :-( ). There was no sign of epilepsy during numerous EEG's.

Does your daughter see a neurologist?
If so, what does he/ she think, any suggestions?
Could it be connecte to a growth spurt, or maybe now your daughter is entering her teens that it may be linked to the changes in hormones that comes around now???+

Sorry I can't be more help.
But if you find anything out, could you let me know, as we may be facing the same kind of thing when Gwen gets older!

Good luck,
Lynne.

Not sure if this will help - I had a similar problem aged about 12 - I have no SN of any description but had about six months of shaking episodes (which started during the night but then began to happen before I went to sleep). All sorts of neuro investigations drew a blank, and eventually they stopped of their own accord. Someone eventually suggested it was hormone related due to my age - might not be anything sinister but definitely worth pursuing. Hope you get it sorted out soon - it was scary enough for me but on top of other issues (sz etc) it must be really worrying. Good luck. xx

Hi,

Could it be clonus, brought on by puberty? Maybe there's a connection. I googled clonus, and it said that it was usually related to growth. Apparently common in newborns. Is you daughter going through a growth spurt? My 7 year old with cerebral palsy gets it regularly, but her therapists say that it is harmless, though unsettling to watch. (She can't tell me what it feels like, but she does not appear distressed by it, just a little resigned when it's over.) Hope this helps.

Mazza

Thanxs for the reply iam really up and down at the moment but it does not make me fell better knowing there are others in the same position. Even were iam from bolton england where theres suppose to be so much support, theres really none a t all but thanxs for the reply and everythings usally better in the morning.

Hello there

I dont have advice to your situation, but I have a nephew who is 30 years old and is in the same position as you find yourself.

He is working and living on his own and is managing his own life quite well except for the loneliness which you are also experiencing.

It is a real pitty that there are no social clubs or get together events (that we know of) for people who are facing challenges like yourself and Greg (my nephew) where you would meet other people and make friends and thereby live a happy full life.

As for your not being able to work, you must just push on and the right position will come your way as you are the only one who can make things work for you.

By the way I live in South Africa and I was touched when I read your letter in this forum as I was searching for a association of sorts which Greg could maybe contact so that he could meet friends.

As for people telling you or making you feel "weird", in a way we are all weird in some way or other as we are all different and therefore unique, dont let life bring you down, go and live it to the fullest.

I wish you all the best for the future.

Hi and thanxs for the replys, jazz13 sometimes being harsh is the best way and i have taken in all your advice. To be honest my dogs are the link to the outside world as the give me exercise and company.
I cant really get any support at collage when i know the support staff cant really help at C++. but looking at my self I cant blame other collage students for not talking as my social skills are bad and i cant talk to more than two people at once. I have seen my gp and the only thing he can offer me is medication to stop the shakes which apparently will lower IQ and might stop me going to collage in the end. I do have a couple of plans for the new year and hopefully spring will be here soon. So thanxs for all the advice and for taking the time to reply.

Hello

You just have to keep on looking as nothing will come to you on its own, and you are right, things do look better in the mornings. Maybe you should try getting into a occupational therapy group of some sorts which would work for you? Im sure that you would be able to meet people there?

Anyway, I wish you well, and if you need just to "talk", Im prepared to listen for what its worth.

Marcel

Hi

i have just read your post and sorry if this sounds harsh but there are people out there with lots of problems me being one of many and if you did not want relpies to give you some ideas you should have not posted in the forum....

i am 37 and live on my own have only been in my flat since end of 2001 and it took me 6 years to get here and i don't work because of the pain i have i would love to work but know i can't life is what you make it...

have you been to your gp to talk to him/her about how you feel maybe talk to a councellor about how you feel.

taking your dog for a walk is great for getting you out and about to see people i take my little dog out i know more about the dogs we meet and my puppy has a springer spaniel for a good friend may be you could let your dog lead you to a dog and you can talk to the owner about what your dog does and they may talk to you that is one way to make friends??

Tabbi [jazz13]

Hi

uktopdog22

I am sorry to hear of your situation, and I sure that others on this forum will agree that life is hard and often difficult but you can't give up.

Its important that you concerntrate on the things you can do rather than what is difficult. I am in a situation like yours and i am now unemployed after working for 7 years, I have applied for many jobs but have received no replies, but i am looking forward to some training to update my IT skills.

It relation to you employment situation there is no law that states you have to inform an employer that you are disabled, they cannot sack you if you dont inform them. I have not not told prospective employers of my disability to see if i get an interview, and its been interesting seeing their reaction.

What you discribe in your college is direct discrimination, have you considered taking it further? Does the course your studying offer support?

I totally agree with you point that many of the problems we face are societies problems because in general society is ill informed and narrow minded. It all to do with socities ability to accept us for who we are personally and not as a "disabled person" who cant do anything.

keep smiling Dont give up.
Andrew

Hi first ill introduce my self iam 25 and i live in bolton england.Ive been diagnosed with Athetoid Cerebral Palsy,as well as other conditions linked to palsy.
All my life ive had friends girlfriends and had a really good social life till about 17.
Now iam 25 no friends i cant get a job ive filled in so many application forms but to no avail.
I am studing c++ and find it very hard. Iam in a class full IT professinals and young fully abled students. Its not the tutors mainly the students. They often avoid speeking to me and form there groups away from me.
I sit next to a 50 year old women who often keeps me company. I often find this in many enviroments and employers.

The only way ive ever been able to get a job is to lie and dont tell them ive a disability.
This often ends up in me getting sacked. Ive been swore at been called uslass. This is often upsetting and sometimes makes me very angry. Ive cried in public when i couldnt do something and in front of my friends,
which resulted in lossing most of them. Iam getting to the point where collage is to depressing,i only go once
week for just an hour. I find using numbers very hard i cant add up or subtract in my head. Unless i have a piece of paper the i can work out anything even hexidecimel or base 2. People have come to the door and convinced me to give them money. This has resulted in my mum only giving me the back door keys, so i cant open the front door to these people.

Now ive often thought do people treat me this way because of my disability or the way i look. Soon i found out of someone i know. They told me i was clean well dressed and i was always well presented. They also told me it wasnt my looks as i wasnt a unattractive pearson. Then my friend told me it was because i was diffrent, i was told i was wierd i did strange things like go of into moors with my dogs. I walked strange i talked strange everything i did wasnt right. I didnt want to go on to holiday to drink but to see things.To be honest i trust my friends words as hes my only friend and i very rarly see him,but he always tries to help.

Ive seen most of my friends grow and have familys and move away, i dont have the full diagnosis with me at the moument, but these dont seem to be my problems, there society's problems.
All i can say is depression is creeping in and iam almost 26 and i can see a very bleak future for me.
I dont want to live with my parents forevere and i would like to have a group of friends or even just to leave my bed room. If anyone has any advice on this coindition or any experiances please tell me.thanxs

Hi Topdog,

Although I prefer cats (only joking), I just wanted to let you know there are other programmers with CP out there, and it is a great career.

I am weird and proud of it!! I would much prefer to be with people who walk in the moors (like in Wuthering Heights) than in pubs!!

The first job interview I went for, they asked "Can you handle pressure?" I said "No" because I didn't know if I could and I cry when my mom shouts at me - strangely, I didn't get the job.

The second job interview I went for, they asked "Would you join us in the pub after work?" I said "No" because I really hate pubs. I didn't get the job.

The job I was successful in was wonderful. I found out I can handle pressure and plenty of normal (not plastic), nice people dont go to pubs after work.
I made a big thing about my disability upfront in all my interviews - I did it for myself, so I wouldn't have to deal with rejection, but it had the advantage that I didn't look as bad (I hope) as I sounded on the CV.
Different things work for different people, but being open has worked for me. (Or was I being sneaky using reverse psychology?)

Good luck in your IT career - I feel very lucky that computers were invented just in time for me - I dont know what I would have done otherwise.
Make an effort to be nice to people and the ones that are worth it will respond. But also if you prefer moor-walkers, you shouldn't hang about pubs!

I hope you get something out of this - I have thoroughly enjoyed myself reminiscing about people I have met.

Cathy