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Mobility during and after pregnancy.

Nuala WattNuala Watt Member Posts: 30 Listener
edited October 2014 in Disabled people
Hi guys - as above really. I have spastic diplegia and am currently pretty mobile - I can walk independently. I also swim four or five times a week. My boyfriend and I are keen to have a baby but I am a bit worried about what my mobility will be like after pregnancy. Also my balance isn't great and I am concerned about falling. I do this all the time and it doesn't worry me, but if I was carrying a baby it would. If anybody's already done this it would be great to talk to you.

Replies

  • NSMNSM Member Posts: 14 Listener
    Hello Nuala

    I also have spastic diplegia. I managed to keep walking throughout the pregnancy, though it did get harder. Falling was my problem, though not as often as I worried I might. On the rare occaisions I did fall I either fell backwards, or onto my hands to protect my bump. The bump changes the centre of balance. With hindsight a rollator might have been a good idea. I had one of those trays on wheels at home.

    Good for post birth too. No one is up and about straight away.

    Get your midwife to put you in touch with a physio who can help with the balance thing and if they are still going the Oxford Centre of Enablement. They have people who are experts on the practicalities of being a parent with a disability.

    I put off pregnancy partly because I was worried about this stuff, but people are good at making things work.

    When I was doing this a few years ago I didn't find anyone else in the same boat, so I am happy to talk more if you like.

    NSM
    Ps The pregancy hormones ease any spasticity naturally which is great
  • Nuala WattNuala Watt Member Posts: 30 Listener
    Dear NSM

    It would be brilliant to talk a bit more - I have mainly been feeling anxious about falling/still being able to walk during and afterwards - it never occurred to me that the hormones would ease the spasticity - that sounds great. I fall fairly frequently, either backwards or onto my hands - doesn't bother me much usually - might if I were pregnant. Did you have a good midwife/medical team? Is a rollator one of those walking frames that you hold in front of you? I've got one though it's not especially stable. I'm rather worried that I might end up in a wheelchair afterwards, but I think that's a scare story my brain is telling me. Apologies if it sounds nuts.

    Nuala


  • Nuala WattNuala Watt Member Posts: 30 Listener
    I just found the Oxford Centre for Enablement and their service for disabled parents - oh my God I wish we lived in Oxford! (Glasgow, which is in other respects a great place to live.) I don't know if there is an equivalent service here - maybe. Also, is there any helpful equipment for parents with disabilities out there?
  • NSMNSM Member Posts: 14 Listener
    Nuala

    Happy to talk if that helps. I had exactly the same fear about the wheelchair and it hasn't happened to me yet. Not in the slightest bit irrational. What I did was get my GP to refer me to obstetrics to talk through the whole thing before I was pregnant. Everyone's CP is different but knowing someone is going to support you from the off is a weight off your mind. It is perfectly possible in a big city like Glasgow you will find someone with experience of disabled mothers too. The other thing I did before the off was to check what meds were safe for pregnancy and breastfeeding. The hospital did a literature search for me and I changed my meds accordingly, took a tonne of folic acid and waited.

    Equipment: OCE gave me a nursing cushion; which I did use; and a sling thing to pick a baby up one handed which I didn't. The best things I got were a bebea chair (a bouncy chair that comes up from floor height to table height) which I slid from room to room with my daughter in it until she could walk, strategically placed chairs, in the bathroom, bedroom etc so I could lift her from a seated position, a lightweight pushchair that folded in half easily from birth and the most expensive was a stairlift so I could get her from one floor to another. There is an organisation called Ricability (I think) which gets people to make bespoke equipment, but I didn't use them. Just spending some time thinking about how to reduce faff can be as useful as a fancy bit of kit and that applies to any sort of parent - disabled or not really.

    The more I rattle off this list the more I wonder whether Scope should think about a factsheet for parents with CP? 10 things to ask your midwife...

    Best wishes

  • Nuala WattNuala Watt Member Posts: 30 Listener
    Hi

    It would be good to talk - especially after my obstetrics appointment, There's a preconception clinic for people with medical conditions at the local hospital and my GP has referred me. After that I'll have a clearer idea of what the issues are. The wheelchair thing really does worry me, so it's good to hear it's not written in stone.

    I had a look at the bebea chair - it looks useful. One of the things I wonder about most is how to carry baby, because I have poor balance and my left hand is more effective than my right. I usually need a hand on the nearest wall for balance, so I look at women carrying babies on their hips and think "How?" My left arm and hand are much more effective than my right, although I'm sure my right could do more work if it needed to.

    I'm not on any drugs for cp. I take high dose folic acid already because of Vitamin B12 deficiency. However I am on an anti-epileptic drug called Lamictal (lamotrigine.) The specialist epilepsy nurse says it's relatively benign compared to others and doesn't cause major issues in pregnancy - 5% chance of 'birth defects' rather than 3%. They do have to whack up the dose in late pregnancy though, because your body stops absorbing it quite so well. I think you can breastfeed with it - they just keep an eye on baby to check they're alert and well - I need to check that. The nurse also said that the baby will have some resistance to Lamictal because I've taken it through pregnancy. I need to check that though. I do want to breastfeed if possible - partly because paradoxically I think it will be easier than bottle feeding.

    I think a Scope fact sheet is a very good idea indeed - it should really be there already. Can we ask for it? One thing I've noticed is that when people talk about parents and CP they generally mean the parents of children with CP rather than adults with children. Capability Scotland have a fact sheet I think - Scope could have something similar.

    Thanks! The obstetric appointment is in the pipeline so shouldn't take too long.

    Nuala
  • ScopeHelplineScopeHelpline Member Posts: 210 Courageous
    Hi Nuala
    It looks like you are getting some good tips from other posts, and it is perfectly understandable that you are concerned about mobility issues and carrying your baby around if you start a family.

    Scope did originally have a factsheet on Pregnancy and Parenting on the website, and Capability Scotland actually used information from our factsheet. However, when our new website was reviewed we felt it was more appropriate to refer people who ring the Scope Helpline, to the organisation with the most expertise and up to date information regarding this subject, which is the DPPI (Disability Pregnancy and Parenthood International) http://www.dppi.org.uk/
    They have a helpline, so maybe well worth a chat with them: tel: 0800 018 4730 (tues/wed/thurs 10.30am - 2.30pm).

    kind regards
    Scope Helpline
  • Nuala WattNuala Watt Member Posts: 30 Listener
    Dear Scope

    Yes that sounds sensible. I've looked at their website. It looks as if they have good information. I've also emailed the helpline.
  • Nuala WattNuala Watt Member Posts: 30 Listener
  • CallyCally Member Posts: 2 Listener
    Hi Nuala. I have a disabiliy called ataxia which affects my mobility. I stay in Dundee (not to far away) i have a wee boy who is 3 xx
  • WonkywarriorWonkywarrior Member Posts: 1
    I've just joined, hence late arrival on this post.
    I have rheumatoid and my mobility is really effected. So when we had our little girl (she's 7 now) I went to the bath hospital for rheumatic disease. In there I met a lady with CP actually who had trouble with her hips.
    Anyway
    I had lots of hydrotherapy there. They worked particularly on my core body strength. It helped with my balance and pre & post baby.
    The lady with CP had a similar regime. They also did other things that helped like sleep 'hygiene' course. About relaxation techniques etc
    Remap fixed my chair with an arm that swung in front with the baby on.
    I used a mei tai sling before that when she was born :)
    I knew she'd be early and c-section so my mum stayed with me- my hubs went to neo-nates with baby. We planned it in advance. They did struggle with looking after a new mum with lots of meds so get what you're on written down
    The council have a statutory duty to support you as a disabled parent.
    Direct payments weve found the better system in this.
    The best bits of equipment were a RABBIT changing mat. They have Velcro straps to held baby gently still. All my able bodied friends got one after i got mine! I do have a rolator but the mei tai sling was the thing for carrying baby. Mei tai because no tricky catches. There are sling meets to try different ones. Try mumsnet for those
    I had a Moses basket downstairs with a blanket so I could pop her for her nap.
    Stair gates- we had the ones like a blind put in. Not cheap. Then found the cheap lidl ones that click into place...! Get one without the bottom bar. You'll need them to section off your home, stairs or not
    We found the MAM bottles the best for baby but they weren't the easiest to hold. But it was a compromise and the bottles meant it wasn't just me feeding baby.
    Try and get a cot with drop side and different bed heights. We got ours second hand and ordered a new mattress to fit off ebay.
    We tried different baby travel systems. Go to john Lewis for this. By all means look at babies r us and mother care but the service was dire for us. We found the bebe confort best. It had buttons rather than catches but was heavy. I've heard the phil & teds ones are better now so look.
    Get a lockable cabinet for your meds. Ikea have nice ones.
    Oh
    And nappies

    We used tots bots washable ones to start with. Huggies or pampers overnight. Once Boo started to really move we changed to disposables.

    Boo is 7 now. Our older 2 adore her.
    She's not the easiest child ever but she's full of character and is truly a wonder to me every day.
    Go for it
    Enjoy the practice ;)
  • EmmaEmma Member Posts: 88 Connected
    Morning ladies! Just wanted to let you know that, inspired by this discussion, we have started a Pregnancy and Parenthood tips section: https://community.scope.org.uk/tips/pregnancy-childbirth Please feel free to add any further tips and ideas to it, which you think may help other people.
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