[I tried to post half of this yesterday with the idea that I would post the other half today. Well wordpress didn't like me then and it disappeared. But thankfully it was saved in word. Only this will be the whole of it so I apologise for it's outlandish length but, well, I had a lot to say!]
One thing I really believe in with CP is the need to communicate with others with it or with other disabilities. A lot of things that I have had or have otherwise benefited from have only come about because someone else knew that it was possible or that the best way to get X was to do Y for example and they told me or they told a friend or my parents or whatever.
Kathryn has written two posts on her blog lately about nutrition for kids with CP, here and here. I find them very interesting reading particularly as it's not an area I've thought about very much. And if you look at the comments you'll notice that I had a lot to say on the topic.
This post isn't just about nutrition (the one I am writing, I mean) it touches on a few other things too.
So things that I think are important, in life in general and when you have CP (or, indeed, any long term disability or medical condition).
Dr's don't always get it right. Sometimes you need to tell them that you don't want to do what they want you too (in my case a surgery which had a 50% chance of making me worse). I've had three surgeries and part of me wants to say never again. But then you should never say never. That specific surgery however, my parents and I discussed it for over a year, we got a second opinion, had some of the tests repeated and I decided no - I was 14 - 15 and my parents said if I wanted to do it they would support me but they wouldn't force me. So the next time my consultant suggested it and asked what we thought... they said no.
Fast forward one year and I went back to see him again five days after my sixteenth birthday. In the UK you sign medical consent forms yourself at sixteen so again he mentioned that surgery. And, says he, you're 16 now Emma you can sign the consent yourself if you want the surgery. I told him no and he told me after seeing me from birth that unless I changed my mind or felt my condition had changed he didn't need to see me again.
Sometimes you need to tell the professionals that they've misread the situation - for example when I first came back from uni my GP was convinced that the answer to all my problems was to go to a day centre. Truthfully the day centre services we have for young people with disabilities (i.e. under 65s) are not set up to cope with someone who is outgoing, does stuff and has an opinion. It was an idea I hated. The fact that it wasn't right for me was something she struggled with and in the end I started seeing another GP.
I got on well with him for a while but then one week I was having an exceptionally hard time with my depression and went on a medically urgent appointment because I really needed help. I told him that I didn't feel i was coping and was worried about what I might do. He simply said "oh, ok then." and then went on to say that he didn't need to see me again. Totally unacceptable and he is no longer my GP either.
I have a lovely GP now who excepts that I know my body and my CP better than anyone and listens to me. She has allowed me control over how much of my baclofen i take on a day to day basis and done other things. The moral of this story is don't be afraid to contradict doctors or to change. you know yourself better than anyone and there is a reason why it is called the PRACTICE of medicine.
Sometimes you have to do things that no one wants you to do any everyone advises you against. For me this was starting to use my wheelchair 90 – 95% of the time. Yes, my walking and my strength have deteriorated as a result and I can no longer do as much. But equally I have more energy and so am able to do more (gait analysis testing showed it takes me something like 4X more energy than the average TAB to walk – or at least one of the goes did, I can’t remember if it was the last one and don’t intend to do that again!). I can’t stand unsupported but doing stuff from my chair allows me to have my hands free and that means I can make cereal and sandwiches, carry things and am learning to cook hot food. That pitted me against many people and is something I might touch on at some point in the new year. But my parents also had many battles on my behalf; some of which with potentially serious and scary consequences.
Another big thing I think about kids with CP is you need to be careful how things are phrased. As a child I was repeatedly told by professionals that I needed to do my stretches and other exercises so that my legs would get better. This resulted in my having to have it explained to me at 13 that better didn’t mean no more CP; it meant I would have some more use, be a little stronger but still need a chair. It was a conversation that devastated both me and my mum. I also believe that the fact my parents instilled both strength and the belief that I can attempt anything I want has made the biggest difference in my life. I was also made to feel by some of my support at school that they could do whatever the hell they liked and I had to put up (e.g frequently being late to class because they would turn up fifteen minutes late to help me up the stairs on a regular basis). Wonderful way to help a disabled teenager and make her feel wanted and supported! Thankfully I have parents who support me and they knew I wasn’t lying. They also supported me when I chose not to go to sixth form as everyone expected but to go to a FE college.
I’ve never been given much in the way of nutritional advice because of my CP. I’ve had a lot of nutritional advice or I suppose diet support you might call it this year because I’ve been trying to lose weight. And to a certain extent it has worked, I am heavier that I was when I went sailing in September but equally when I weighed myself yesterday I was 10lb lighter than my heaviest weight from earlier this year. I’m still roughly 4 stone and a bit or 60lb overweight and as such my Body Mass Index (BMI) classes me as obese.
One thing my parents and I have both been told separately is that the more you weigh affects your centre of gravity and so I would find it harder to transfer and to walk and generally to move around. I believe that has to do with balance and with CP most people tend to find they have poor balance – I definitely do, whilst I can stand unsupported I can only do so for about 20 seconds and that has been described by one of the many many physiotherapists I’ve been treated/supported by as being not standing but “controlled falling”. My mum once said the way I move had been described to her (I think I terms of the effort/energy expenditure required of me to do it) as “like moving through treacle”.
I definitely do find it easier to get around when I weigh less but I also find that my level of spasticity at any given time plays a role in this. The more spastic my muscles are the harder it is for me to move so the less I do and so the less calories I burn and if this continues for more than a week or so I may gain a few lb. high spasticity like that which sometimes affects me however can be somewhat painful which in me once it lasts more than a few days can trigger a touch more depression (as equally can finding it harder to get around for any reason) so it turns into a bit of a vicious circle.
In terms of weight I’ve also (somewhat contradictoraily) been told that the BMI charts are unrealistic for wheelchair users – this I do agree with somewhat – and that I should make sure I don’t get too low in weight because I would be putting myself at increased risk of skin breakdown and pressure sore related issues as I would have less padding on my “bony bits”. I’ve never had full blown issues with either but I have found that when I am thinner my pressure areas do get a bit more uncomfortable.
A final point about the CP and weight debate is that low weight might not be simply because a person has CP and has energy expenditure which is high or problems with digestion. I know a person with CP who has what could be described as the opposite weight issue to me. And i truly believe she may be anorexic.
So what do I think about nutrition.
Cranberry extract is something one of my GP’s told me to take when I had the recurrent UTI in 2003/2004. And although I no longer take it regularly it does help me a lot. I also believe it paid as important a role in shifting the stubborn infection as the four months of daily antibiotics (50mg nitrofurantoin daily) If my bladder is feeling a little irritated often lots of fluids as well as the max daily dose of cranberry extract will help out a lot; either curing it completely or alleviating it somewhat until I can get to a doctor and get some meds. I believe their hasn’t been any research showing the effectiveness of the extract supplement but that research has shown that 1 litre of pure cranberry juice daily helps a lot (pure meaning that if a mixture such as cranberry and raspberry juice is used, 2 litres must be drank instead). But for me I have found that not only is the extract much easier to get home from the shops and cheaper it works just as well as the juice.
Fluids. Push, push, push, push, push those fluids. It doesn’t matter too much what, it’s a quantity thing. I can always tell when I’ve not drank enough and have learnt the hard way that if I don’t drink enough it causes me issues. A couple of times I’ve gone out for the day not had much to drink because it was difficult to find suitable toilets and then a day or two later had a raging UTI. So now I keep drinking and have the hassle of finding a loo rather than getting ill. In fact I panic a bit if I get to the evening and do a rough count of how many cups/cans/mugs of drink I’ve had and it isn’t much. I aim for two litres daily but often drink more. This is again slightly different to what my doctors advised; I have some issues with control of my bladder and in that case it is recommended to drink less fluids. If I do that I get ill with UTI’s but also with headaches.
Cafeine is evil. I love me some of the sweet brown fizzy stuff that’s absolutely full of caffeine but equally when I gave it up for a week to see if it helped my bladder I found that it didn’t so much help that but my so bad I have at times wanted to kill myself pms was much less in fact almost non existent. And again when I went sailing with JST and for five days had minimal diet coke (I don’t drink coffee or regular tea as I don’t like them) and sugary snacks I had a lot less depression and anxiety then and for several weeks after. This is an area of my diet I intend to work on a lot during the period immediately after the new year. Caffeine also dehydrates you and I do drink a lot of it but I can tell when a lot of my fluid intake is made up of that.
There is actually a lot of research coming to light about the links between diet and depression etc. I feel slightly bitter that no one told me about this when I was first diagnosed with depression (almost four years ago) but equally I probably wasn’t well enough at that time to have been able to take the information in, process it, and act on it.
Breakfast: this is an area I’m not very good at but which has helped me a lot with losing weight and I again need to learn to focus on. Several people I know are very much into having a glass of milk or very milky cereal with breakfast believing that milk is extremely important for people with CP. It’s not something I’m very into but I do see the logic behind it – I believe it is that calcium is important to prevent brittle bones and people with cp have a higher incidence of falls.