Living Positively with Cerebral Palsy
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Baclofen pump

Hi I'm 40 years old and just over a year ago I had a baclofen pump inserted. I just wanted to let everybody know in case I can be of any help.

I took baclofen for many years orally and got to pretty much the maximum dose. There was nothing more they could offer me to ease the spasticity. I still take gabapentin because the side effects of this epilepsy drug actually help with spasticity.

Sending all good wishes to you:-)

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Hello Hopesearcher,

Sending you good wishes too.

I love your positive user name by the way. I am a little older than you, (52) and I have been struggling with increased muscle , decreased range of movement and more fatigue for the last few years .

I was lucky enough to be referred to a hospital consultant how deals with spasticity , given 4 weeks of neuro physio: and then he put me on a low dose of baclofen tablet. I have been using it for less than a month and have been having side affects even at this low dose.

I have not used muscle relaxants (not since a short course to improve movement range when I was 11) and I am the type of person who is naturally wary of drugs?

They seem to be adversely affecting my mood too? I feel a bit down and depressed , more so since I started on baclofen.

It would be good to here more of your experiences? I know there are many levels of cp.

I have spastic diplegia.

I had no idea gabaprentin was used for spasticity? I thought it was used for nerve pain , epilepsy, anxiety and fibromyalgia. So it is interesting you take this. How does it help you? If you don't mind me asking?

Pleased to meet you btw and be happy.

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Hi spzgirl51

Thank you so much for your reply. It's this point I have to apologise for any weird stuff that might come up here as I am voice texting and it can come up with some funny words haha.

I'd been taking baclofen 4 probably about 15 years. In around 2014 it had got to the point where I was maxed out on medication and it wasn't really touching the spasticity.

I was seeing a consultant called professor Kischa at The Nuffield in Oxford and he was giving me botox injections into my lower back. Have you heard of that? The botox is meant to relax the muscles and I was expecting this amazing relief from it. He told me before I left my first appointment for the botox that I could possibly end up leaning forward as a result of the Botox and I was waiting for that to happen but it didn't!

I had about three more attempts. There was still nothing. He had already mentioned to me about the baclofen pump but I was terrified at the prospect. In the end I was unable to bend enough to even sit on the toilet easily so I decided to go for it I my husband agreed.

We have a meeting with a neurosurgeon at the John Radcliffe Hospital who assessed me and said I was a good candidate for the pump.

I had the first test dose in 2015 which was unsuccessful, then I tried again in March 2016 and 2 weeks later I was back in to have the pump itself inserted.

It's been a long road but I have now reached the amount of baclofen that my body can handle so now it's just the case of going back to have it refilled every couple of months.

I have been on anti-depressants since before I had the pump. I never experienced any particular change in mood as a result of it.

It was the professor who decided to try gabapentin. My speech became badly affected. We knew we couldn't increase the baclofen. The gabapentin is used purely for its side effects.

I was having trouble with some nerve pain at the time but he told me about how it could also help with the spasticity. And yes it did. The only thing to consider is that gabapentin does affect your mood but it can affect it in a positive way. If you find yourself with depression it can help but likewise if you decrease it (which I had to when the pump was reaching a higher dose as I was getting more sleepy), they can make you very low.

We had discussed with the team at Oxford how to gradually reduce the baclofen tablets a couple of days at a time. They left it up to me whether or not I wanted to start on the gabapentin reduction. So when it came to it I decided to give it a go and did as we had done with the baclofen. The first stage went really well and then all the sudden my mood seemed to plummet.

I just had a feeling so did some research and found out that the longer you have been on gabapentin the longer you should take to come off it. Bearing in mind it has been a few years I realised that I had done it too fast, it is also known to affect your mood.

I really hope I have managed to answer your question and I am more than happy to tell you much more. Could I ask you have you found that your disability has got worse as you have got older? When I first met my husband 17 years ago I was much more able than I am now. I was on crutches and able to live alone and do all my personal care cooking cleaning etc. Now I am in a wheelchair and John is my full-time carer. It's only been over the last year that's it has hit me hard and I have suffered with very bad depression and I get very anxious. I didn't see this coming. It's almost as though I have something like MS and not having been prepared for it it has come as quite a shock. It has been a gradual deterioration from around 2009 but really it has been happening over many years.

I will send you a private message and give you my email address if you would like to carry on chatting? I also have splastic diplegia and it's not something I've come across so it's nice to find someone who knows what I'm talking about!

So very nice to meet you and I look forward to getting to know you better.

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Hello Hopesearcher ,

It is really good to meet you too. I was hoping to find other adults with cp and compare notes.

Yes I have found my disability had got worse in recent years and it has come as a huge shock. That is the main reason I am trying the baclofen. I have been fighting depression for while too.

I will pm you.

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Hi there to you both,

I am in my mid 40s and my spastic Diplegia CP is worse than it has even been. After a hip replacement two years ago, I have all but given up with my fight to walk unaided and have turned to medication for pain relief and to help with anxiety.

As you get older, the body doesn't cope as well as did with a poor gait, muscle spasms and increased spasticity. I've tried neuro physiotherapy, baclofen, tramadol and now pregablin.

I have found that the pregablin has helped slightly with the anxiety, but doesn't do much for the pain. Any medication seems to have side effects.

I wasn't expecting the loss of mobility either and now I'm reliant on a wheelchair - it's difficult to get the same support that was there when you are a young person.

With all things, you have to be resilient, find your own way to do something and focus on what you can do - otherwise it will get the better of you - 'it' being the depression.

Try to do as much physio as you can - if you can get to a pool this can help loads too (much better than pain medication). I hate the staring, but I can swim further than the people who were staring yesterday so I shrugged it off.

I have recently decided to try and do something about PIP and ESA (having been told that I don't qualify for the enhanced rate of the mobility component and finding out that I might lose my car in October).

So, one pack of Pregablin, a big dose of anger and something to aim for (my MP), has helped me realise that a wheelchair isn't going to stop me (not just yet).

ourvoices.org.uk

I've just had my first blog published too - disabilitytalk.co.uk/2017/0...

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Hiya it's just a really quick reply for now but I really wanted to pass this on and hope it will help you. You may have already found it but there is a site called benefits and work and they for a small fee a year will help you through your application and they win a lot of fights!

I will reply more soon but thank you so much for sharing and I hope that which we can three of us we can make sense of it all

benefitsandwork.co.uk/

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Thanks for the info - I've already signed up with them. My fight isn't so much mine now, but about getting the system changed so that it's right when people are assessed and get the right award at the beginning of the process.

I have my fingers crossed that mine won't go to a tribunal, but statistically it doesn't look good - 79% of claims go to appeal and 64% of them get awarded in favour of the claimant at tribunals. This needs to stop - people shouldn't be forced through this process (in my opinion).

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Hiya I really feel for you. Up until around 2009 I used to drive. My motability car was my lifeline. The people who push pens and fiddle with paper work have no idea what they are potentially robbing from us. I can't imagine how I would have felt back then if I had lost it all together. Now I need a wheelchair accessible vehicle and John drives. I miss driving so much but after having a near miss with a dear friend in the car I decided enough was enough. It got to the point where I was in so much pain that I was not paying attention to what really mattered and fortunately on a very quiet network of streets I went through a stop sign. I knew that if I told the doctor I felt I should give up driving I would lose my driving licence. I drove with hand controls and it took me two and a half years to learn and pass my test. I had invested a lot of my life in my driving and I wasn't about to give up something so easily. At least now even though I can't drive I can use my licence as a form of ID and it is also something I'm extremely proud of. I really hope for you that it doesn't go to tribunal but I also feel how angry you must be that you've been put in this position in first place. Surely the fact that you now need to use a wheelchair means that you are in need of your motability car more than ever. Have you approached the Citizens Advice Bureau? I'm sure you have this is all really just ideas. Glad to be in touch and as I said to the other lady that has posted in this thread it's so unusual to find other people with spastic diplegia these days. best wishes x

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Hello All,

It's really useful to hear all your comments on spastic diplegia and the Baclofen Pump. I have never met anyone with the same level of CP that I have so it's interesting to read your posts. And, say YES that's me too!

I have diplegia and have been using Baclofen (orally) since 2012 when my Spasticity began to get the better of me. I am currently only on 40mg. I have seen a Nero Physiotherapist fairly regularly since 2012 and she is brilliant at sorting me out but she is NHS and so the sessions are not continuous. Last year I began seeing a specialist in CP and she is monitoring me.

I have progressed from using no sticks to one stick and now I use two sticks to get around. However, I'm not confident at walking outside especially in unfamiliar places so use my four wheeled rollator. (only purchased in 2012). I also use my Sholley Trolley for my shopping trips.

I love cycling and ride my semi recumbent tricycle everyday it has a battery for pedal assistance great for the hills. I have always ridden a bike/trike and the latest one I have should last my for a long time. It's my only form of transport as I don't drive.

I also swim every week and this is my saviour after a day in office I need to unwind! I swim using my arms only and currently swim 70 lengths in an hour. I love it the feeling of freedom is wonderful. Yes, I do need help to get in and out of the pool these days but I haven't resorted to the hoist yet.

I have always worked full time until this year when I turned 50 I decided to cut my hours down and work four days a week. My employer has been fantastic about this and fully supported my decision. They have also been very supportive over giving me time off for appointments which have been more frequent over the past 5 years.

I have certainly noticed a change in my abilities to get around and my levels of movement and fatigue in the last 5 years and as one of you said it has come as a bit of shock.

I will continue to do everything I can to stay as fit as possible.

I've not started on the PIP road yet but really not looking forward to it!

Best wishes to all

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Hi Madtricyclist

Wow you are so amazingly busy! It must feel good to be able to keep going and do what you want to do in spite of all your potential barriers. You are certainly not a person who is easily discouraged! You should be proud of that.

There is at least a couple of you who have got to be much older before your CP has managed to set you back as far as I have been.

I used to be able to ride a bike years ago as a child. I remember there was a trike at school and although I couldn't get the pedals to go in the full Revolution I still managed to get to where I wanted to go.

The most important thing is to make sure that everything you do is what you want to do but that you are not doing anything that could set you back further in the future.

I understand completely what you are saying about not being able to get regular access to a neuro physiotherapist. This would be so helpful to me. My husband is my full-time carer but there is only so much that I can expect him to do and trying to do physiotherapy against spasticity even though I have the pump is not great for his back.

I haven't done swimming for a long time because it was the time that you have to get out of the pool that I found the worst because of getting cold. As soon as I'm cold the spasticity kicks off and any benefit I had in the water is lost.

Well this sounds like a really moany post.. I'm really sorry that's not the impression I want you guys to have with me.

I have always seen my disability as a gift. There is so much I can do to help other people. It doesn't necessarily have to be someone who has a disability just to be able to have that empathy because you've been through so much already. Life has always been a challenge but that's part of living with CP. Sometimes you have to face it and find a way around it.

On Friday it is our 16th wedding anniversary. I am truly blessed to have an amazing husband who when he met me says that he was ready for anything that could happen as far as the CP was concerned. And I guess the worst has happened as far as my ability to look after myself and John has now become a full-time carer. He left work in 2010 to look after me.

I had a full time job in 1997 having left School. In 2000 the company went into liquidation. I was so determined to carry on working that I managed to find another job a few months later. I stayed in that company for six months but unfortunately had a breakdown so had a few years off work. In 2004 I went to work as a play worker and was subjected to discrimination. I contacted my disability employment advisor Who told me that yes it was direct discrimination but because it was pre October 2004 the DDA was not covering companies with less than 15 employees which this was. She said I could either stay on tough it out and wait till October or leave. That's what I chose to do because I thought it was best for me. I have not been able to work since.

All these years I was driving and in 2009 I decided to give up which is what I think you will have read earlier.

I have had the pump 18 months in September and I can honestly say it was the best thing I could have done. There are many ups and downs about it and on Monday it was actually my first decrease of the dose. The team at the John Radcliffe our fantastic and I would recommend it to anybody.

I am determined in anything I set my mind to do. There is so much I can't do now that the things I can do I take very seriously and studiously and don't give up easily!

I don't mean it in a patronising way but you are all inspirational and thank you so much for sharing your experiences it is making such a difference to me to have people who truly understands what life can be like I really do appreciate it. :-) :-) :-)

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Happy Anniversary Hopesearcher

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Thank you very much! Xx

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Hello Madtricyclist ,

I am very interested in your post. I have got to 52 without meeting anyone with spastic diplegia before. I feel blessed that this forum exists.

i have been 'coping' badly with my increased muscle tone for several years it had been so gradual that I was not even consciously aware of the reasons behind the change.

i had developed rheumatoid arthritis in the last few years . So irrationally, I blamed that for my loss of movement and reduced capacity to to things.

My light bulb moment was being told that I could think about applying for neuro physio when I was being assessed for hydrotheraphy by the rheumatology physio dept.

It took a while but I was offered only 4 sessions of physio and then told do an exercise referral at my local gym? so I get the most benefit from it?

If I am honest I feel resentful that It was 4 weeks and no more?

This was made very clear to me despite my Gp suggesting I enquire when I might go back for another round of physio. I have not had specialized physio since I was 18.

I have tried to keep healthy and go swimming and keep my weight down to help my joints last better etc.

I am very envious of you getting repeated physio on the nhs.

How did you manage it? I know each area manages their on budgets and set their own standards.

I am probably at fault but I did not know what help is available? I got the impression that it was all child centred so I never felt there was any point in asking. You have this and you put up with it so to speak.

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Hi Spazgirl51

I’m sorry it has taken me a few days to reply to your post. I suffered a week of extreme fatigue and couldn’t face doing anything when I got home from work except eating and sleeping. Then I caught a cold bug which has wiped me out for another week! I have never been able to pace myself and just stop before I get stopped in my tracks.

Anyway, you asked about my physio. I have the most amazing physio who I first met in 2012 when my ability to walk took a dive. She got me back on track with the help of Orthotics in both shoes and various stretching exercises both these things I have continued to use and do.

I get six weeks of physio and my physio said quite early on that six straight weeks one after the other was no good for me it needed to be more spread out to make if more beneficial for me so that’s what she tries to do.

I’ll maybe have a session and she will assess what needs pulling/pushing tweaking and if it’s bad then I’ll see her the following week if not it could be in two weeks’ time. Once she’s sorted the problem I may just go back in three weeks for a check. Once the ‘six week’ session is up she always says she’ll keep my file open for a month and if I have any problems that I can’t sort myself then I just need to phone up. I have used this once or twice it saves starting again with a referral from the Doctor. Although when I did see my Doctor recently they told me just phone and she would refer me straight away.

So I believe the trick is to get the physio sessions spread out over a number of weeks if possible. Do the exercises they give you at home this is not always easy I know but I’m sure they help. If I could live my younger life again (pre and post teen) then I would certainly tell myself to do my physio!! Knowing now what my mobility is like.

I really hope this helps? Let me know how you get on.

Good luck!

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Hello Madtricyclist .

Thank you for your reply.

Sorry to here you have been Ill. I hope you feel better soon? Your relationship with your Gp and physio sounds idea. I have had problems accessing the right physio.

I saw a physio several years ago for a wear and tear shoulder injury, who gave me excellent treatment for that but admitted he had only one days training in spasticity so he was unable to advise me in any way.

I was referred to neuro physio in my local hospital this January for stretching exercises because I am experiencing increased muscle tone an less range of movement for the last several years.

It was made ABUNDANTLY clear that even though my gp would be happy to re-refer me for more treatment with suitable passage of time , I was only allowed 4 weeks and no more.

I was left feeling angry and very sad as I do not feel able to manage stretching myself with any meaning full degree of success. It was posited that I should take up going to the gym and get special help to use the equipment.

This, to me, seems like a very poor substitute for specialist help from a trained physio.

It was the first physiotherapy I had received specifically for cerebral palsy since I was !8 yrs.

Why do they wash their hands of us at that age?

It made me feel angry and even more alone even though the treatment I had in the neuro physo dept was excellent.

I suppose it is nhs rationing, but it feels like treatment pathways are too narrowly defined to be helpful?

At the gym, I 'use' only 3 different machines in a very limited way because I am not capable of doing more. it all seems so unfair, even if on paper I am receiving treatment?

It makes a huge difference what the local policy is and we have no right to challenge this it seems!

Thank you for sharing your experiences.

Take care xxx

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Hi All,

I have never spoken to anyone else before (in my life) who has CP. For years I just wanted to fit in with everyone able-bodied and feel normal. Most of the time I did a pretty good job (until I was faced with steps without a hand-rail).

I really started to notice my disability when I became pregnant, towards the end I was in a lot of pain from SPD (Symphis Pubis Dysfunction) and had to use a wheelchair for the first time in my life too.

Somehow, I wobbled around with a baby in my arms (whilst Social Services quibbled over who should help me - they took so long, I never got any help). I'm certain that things had taken their toll, and I had to start walking with a stick around 5 years later.

It's funny (in a non-amusing way), how the information suggests that CP doesn't get any worse:

"While the symptoms may get more noticeable over the first few years of life, the underlying problems do not worsen over time." Wikipedia.

It's true, the brain damage does not increase, but our symptoms do get worse (I realise this now from reading everyone else's posts) - I originally thought it was just my own experiences of living with CP.

Access to life-long physiotherapy would be amazing for everyone with this condition, but I can see that's not possible (unless I win the Euro-millions jackpot).

I'm impressed by 70 lengths in one hour in the pool - I will have to up my game (I stop after every 2 lengths to do a physio exercise).

I've had to cut back on work too. I currently work from home as it has taken 7 months (and still counting) to get a wheelchair from the NHS. I have been forced to buy my own, to help relieve the pain of walking with a Zimmer frame (I couldn't manage with a rollator).

I also struggle with unfamiliar places - this seems to throw people, particularly the physiotherapists and other medical professionals. I don't cope well with changes of surface e.g. a carpet I'm not used to, entrances to buildings. I feel like my brain can't adjust quickly enough to allow me to balance - something else that is new to me. It must be similar for someone with sight difficulties who has to learn their surroundings - I (we) have to learn them too.

Happy anniversary Hopesearcher.

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Hi MeAndit,

Just a quick line to say, I totally agree with your last paragraph of above. Wow I thought I was going mad as I now have to stop and process the ground if I'm coming up to a different sort of surface e.g. hard floor to carpet. Or different surfaces outside. Most recently (last week) I tripped and fell twice whilst walking into a shop because they had one of those loose black carpets just inside the door and as I stepped on to the hard floor in front I just lost my balance or caught my foot on the corner of the mat which rucked up. Not really sure what went wrong but it was all very embarrassing as I hit the floor. No harm done except my pride was dented again!

It is so good to know I am not the only one.

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Hi MeAndIt

Always hard to say things are getting difficult so I admire the fact that you have cut back on work as this is the most sensible and right option for you.

Do you go into the office at all these days? Have you heard of access to work? Please excuse the lack of capital letters and other punctuation where there should be some as I am using voice text. I hurt my wrists and arms almost a year ago and because I use my arms so much to transfer and change position I cannot get them to heal.

Access to work is a government funded scheme that pays for anything you need in order to do your job. I would have said that the wheelchair you needed would have come under this as I have done it in the past. I will leave a link just in case it is helpful to you.

gov.uk/access-to-work/overview

It is truly wonderful to meet you all and believe me when I say that you are making a real difference to me already.

Take care xxx

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Hi Hopesearcher,

I am in discussions with Access to Work and trying to get to grips with getting up slopes etc. in my wheelchair. Annoyingly, I have injured my shoulder - I'm waiting to here from my GP regarding an x-ray.

My work are very accommodating about me being at home, but I would like to get into the office (independently) some of the time.

I do get frustrated that (from a work perspective) I am not achieving all that I could. I took a massive step-down on the career ladder about 3 years ago and unless I am independent, I'm not sure if I can climb back up it again.

Having said that, I do think my wheelchair is slowly helping me get my 'mojo' back. I hated being pushed around in a transit chair (people ignoring you and speaking to the person pushing the chair).

I have also found that people will talk to me in my wheelchair (as they don't know why I am in one), whereas when they see me walk, they look away and 'ignore' you. Unless as Madtricyclist says you are in the middle of tripping and falling - then it feels like the whole world is watching.

Steps are another favourite of mine - they usually involve having a mini panic attack - by the time I get down them, the whole world knows I am there. It's even worse if my husband is wearing flip-flops and adding to my own wobbling (I think he does it to annoy me - I love him really)

Hopesearcher - I forgot to say not to worry about the punctuation etc. I've had tendonitis 3 times in my left wrist this year, as you say your arms start to take over the roll of your legs. I might have to go to the gym and pump iron at this rate.

We have recently purchased an Amazon Echo, so that I can switch (some) of the lights on and off without getting out of my chair and use the radio etc. I seem to spend most of my time telling (shouting at) 'Alexa' the voice recognition software to 'stop' - I'm not sure if I could be that patient with voice texting.

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Hello dear friends

Today has been our 16th wedding anniversary and it's been really wonderful. But my wrists are super sore. I'm going to have to self impose a technology ban ❗ I really don't want to but if I don't do something I'm going to be in real trouble. So I am not ignoring you guys and believe me when I say that this group of people is so important to me. So I ask you please to carry on in my absence and I will be back. The problem is that although I am voice typing I still need to use my hands for the times when Google does not hear what I'm saying right especially when the spasticity in my mouth is bad. MeAndIt was just saying in a Post how Alexa can be really frustrating when she doesn't hear what you're trying to say! It's hurting me more to think that I need to stop doing this for maybe a week. If I can just do that and try to get on top of my exercises, when I come back maybe it won't hurt so much.

Love to you all xxx

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Hi spzgirl51,

I think the lack of support and clinical pathways for adults with CP is very sad. So many of us also have other problems to contend with (e.g. arthritis, depression, pain, fatigue) and yet we are left to fend for ourselves.

We probably all find ourselves apologising for our disabilities, whether it be to our GPs when we ask for help, or a misplaced bag that we need someone to move. I have trampled on the feet of many trying to get into a theatre or cinema seat.

I want the world to apologise to me (us) - but then I think about how it must feel for someone who hasn't been disabled all their life and has to quickly come to terms with an illness or life changing injury- is it worse for them?

I was in a pub on Saturday night and struggling to get down a step (an old coaching in). I had to put both arms round my husband's neck and say "I'm going to jump". The people sitting next to the step smiled kindly, so as I wobbled passed I said "That was our Dirty Dancing Moment".

I don't know if they were shocked or thought it was funny.

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Hi everyone

Really missed you! Have decided to come back having done my best to rest my arms and wrists.

I want to ask you all have any of you got scoliosis? If so what sort of doctor do you have looking after you? My scoliosis hasn't actually been addressed since I was about 12 and now it's getting so bad that I am struggling to sit comfortably in my wheelchair. Wheelchair services have tried their hardest to make me a comfortable seating system and after almost two years we still haven't really reached a solution.

I've had a bit of a nightmare with the baclofen pump at the moment as well. It was increased by another 5% about seven or eight weeks ago and it became too much. My breathing was affected and my lean-to the right was more difficult to correct. But by the time I've managed to get an appointment the breathing has settled down but the spasticity is bad and I dare not habit reduced more because of how bad I'm feeling already. I went to see them about a three weeks ago and they reduced it by 2.5% so it's not to suck my system too much. I'm scared to have it reduced any further to get back to where I was before the 5% increase. I hope this makes sense! Does anyone else have nerve pain? I keep getting really sharp pains in the backs of my legs and especially at night when I need two pillows to keep my knees bent and my heels off the bed.

Sorry for all the complaining! I hope everyone is doing ok and I'm so glad to be back with you all again.

Best wishes to you all my CP buddies!

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