Cerebral Palsy
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Lockdown, homeworking and CP

Charl73Charl73 Member Posts: 26 Courageous
edited October 2020 in Cerebral Palsy

I’ve not written much on here since I was first diagnosed with mild CP at 44. However, I’m after some further advice/reassurance please!

I’ve been homeworking now since April and although at the beginning and during the time between when I was furloughed I did go on regular walks with my partner.  However, I’ve now seen an intense deterioration in my confidence with walking unaided without the arm of my partner :-( I’ve had a few falls which have also knocked my confidence.  I sometimes feel that my legs are frozen and I can’t move, I think the majority of this is physiological but it is really getting frustrating and upsetting.  I’m fine when I’m in my own home, it’s when I’m out and about.  I’m considering getting a stick, which I don’t want to do.  I just wandered if anyone else has experienced this or has any advice on the way forward please.  Thanks so much for reading this.

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Replies

  • GeorgiacdonGeorgiacdon Member Posts: 33 Connected
    Hi @Charl73. I have mild right Hemiplegia and find a little bit of exercise is good. But when I am tired or been at work all day I start tripping over the silliest things. I also find that I can’t think straight when tired also. Which makes my walking worse as I’m worrying. I am trying to get the right medium with exercise and having a rest. But still not found the solution yet.
  • Charl73Charl73 Member Posts: 26 Courageous
    Hi @Georgiacdon thank you so much for your reply. Reading how you fell is exactly me! If you find a solution let me know, take care
  • Richard_ScopeRichard_Scope Community Team Posts: 2,489 Scope community team
    Hi @Charl73
    Although I don't walk anymore I can relate to how falling can make you feel and the emotions it can conjure. I have roughly two to three bad falls per year and a fair few insignificant ones. I completely get it.

    First of all, @Georgiacdon is absolutely correct when they mention tiredness. Tiredness can really hamper our already tricky movement skills. For example, I will never attempt to get in and out of the bath in the evening after a full day and work or chasing around after our daughter. Here is something that I wrote about Fatigue and CP in the Scope advice pages.

    Keeping active is vital not just for our physical self but also for brains. Activity and exercise at whatever level really helps to maintain the neural pathways that send the messages to our limbs. Something that I started during the lockdown and working from home was Seated Yoga. This helps in two ways, physically by keeping the limbs and joints supple and mentally with breathing and mindfulness, this will help you to be able to control those feelings of panic that you mentioned.

    Now the practical stuff, make sure you have good supportive shoes! So many people contact me worried about their walking and or falling and they are going for outdoor walks in flip flops or sandals! Do you were orthotics, @Charl73?
    Also, I understand your reluctance to use a walking stick but mobility aids can also be liberators. In my case, a wheelchair revolutionised my life but I fully understand that using mobility equipment is an individual journey :smile:

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • GeorgiacdonGeorgiacdon Member Posts: 33 Connected
    Thank you @Richard_Scope, will check out the advise page and the seated Yoga, in the last 6 months I have made a lot of changes to my lifestyle to help with my tiredness and feel better for it.
  • Richard_ScopeRichard_Scope Community Team Posts: 2,489 Scope community team
    Hey @Georgiacdon, I have too and the thing that I have found is that the changes don't have to be huge to be of benefit. If you have any tips for us you can share them in the Things that you have found helpful for managing your CP it's quite a large conversation but has some excellent tips from fellow CP'ers like us.
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Hi @Charl73, how are you? I'm 22 and I also have mild CP. I started using a walking stick when I was 18 due to fatigue and having more falls.

    I full appreciate the mental battle of using mobility aids and the feeling of 'failing' if you have to use one. However, over the last few years I have found that mobility aids actually have supported my independence and confidence. Have you thought about getting a stick that suits your own style? Here is the yellow walking stick that I use, it comes in a range of colours. :)

    There is always someone around if you want a chat and please let us know how you get on. :)
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  • Charl73Charl73 Member Posts: 26 Courageous
    Hi Richard_Scope, thank you both for your responses.  I don't wear orthotics but I do have sturdy comfortable and supportive trainers.  I will have a read of the links you sent later today.  I may have to bite the bullet and get a stick, I've got one I got from Aldi a couple of years ago that I can dig out.  It's just taking that step; excuse the pun.  Thank you again so much for all your words :smile:
  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    No problem @Charl73! We're here if you need anything at all and do let us know how it goes if you do use a stick. :)
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  • Charl73Charl73 Member Posts: 26 Courageous
    Thanks again Chloe_Scope . I've been going for some short walks the last couple of days.  Yesterday wasn't too bad but today was terrible :-(  I just couldn't let go of my partners hand, when I did I froze and became completely ridged.  If I held lightly to his finger I was ok but it was the intense feeling of falling over that I'm feeling.  When I freeze I tend to go on my tiptoes; I tend to walk on my toes first rather than my heels; which as you'll know is common with CP.  I don't understand why this has suddenly come on so bad, the only thing I can think is I had a fall at a train station a couple of weeks ago and perhaps this has knocked my confidence.  I'm going to get in contact with my physio to see if I can have an appointment.  I'm still doing my Pilates but this week I've been doing it via Zoom.  Thank you for listening; it does help just putting my thoughts down :)
  • Tori_ScopeTori_Scope Community Team Posts: 2,747 Disability Gamechanger
    I'm sorry to hear things weren't so good today @Charl73. I can imagine that the fall would have knocked your confidence, so it might take a bit of time to feel more comfortable again.

    How have you been finding Zoom pilates? 

    Let us know how you get on with the physio :) 
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  • Charl73Charl73 Member Posts: 26 Courageous
    Thanks @Tori_Scope.  Zoom Pilates is great as I’ve got no excuse not to attend! I’ll keep you posted on my progress 🙂
  • Ross_ScopeRoss_Scope Community Team Posts: 2,013 Pioneering
    That would be great @Charl73, we'd love to hear how you're getting along with it :) 

    How are you doing today? 
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  • Charl73Charl73 Member Posts: 26 Courageous
    Hi!  I thought I'd let you know how my week has been; at home has been fine, I've done 2 Zoom Pilates classes.  However, I'm still having major difficulties and challenges when I go 'outside'!  I'm still freezing when trying to walk unaided on a hard floor ie pavements, without Richard (my partner) or my Mum and Dad.  I've been going out for walks with them on my lunch or after work; not for too long though.  Sometimes I'm ok but 9 times out of 10 I'm not.
    I also had my first physio appointment since I've been feeling like this and she was absolutely brilliant.  Kat totally understood where I was coming from and gave me the once over and watched me walk, which I managed, a bit stiffly in the room.  She has given me some exercises to do and explained that my muscles are 'turned on' all the time.  She thinks it maybe physiological, which I believe it partly is but she also thinks it could be medical too, so she is contacting my GP to see if I can see a neurologist again.
    One thing she did say is that she doesn't think I need a stick and that with her help and exercises I will come through this.  I'm still getting extremely frustrated and upset with myself but I'm staying positive!
    I watched The One Show yesterday where they were interviewing 19 year old Rosie who has CP.  She is an inspiration and had me in tears.  
    It got me wondering, is there anything we can do to make people more aware of CP in adults?  I also seem to see charities/articles for children but it seems to disappear when it comes to people like us!
    Take care, Charlotte
  • Tori_ScopeTori_Scope Community Team Posts: 2,747 Disability Gamechanger
    I'm sorry to hear getting out and about is still difficult @Charl73.

    I'm glad you're still sticking with the pilates! As you say, there's no excuse not to go now :D 

    It sounds like your physio is a good fit, which is great news. I hope she can help. I'm sure it must be difficult to stay positive, but it sounds like you're on the right path :)

    I'm sure others will have more information, but here are two things you might want to get involved in:
    I agree that it's really important to raise awareness of CP in adults. Did you have any ideas in mind? 
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  • Richard_ScopeRichard_Scope Community Team Posts: 2,489 Scope community team
    Hi @Charl73
    I'm really pleased that your physiotherapy appointment went well and I think that a referral to a neurological consultant or a neurological physiotherapist os definitely the right move forward.

    Raising awareness that CP is not a childhood condition is vital. Scope has been involved with things like Cerebral Palsy Care Pathway. This was the biggest change in the way that CP is addressed in over 40 years. It covers treatment and therapy pathways as well as support for adults with CP to live the life they choose, Work, education, independent living, relationships etc.

    We haven't stopped there either, Scope is actively working with other CP interested organisations within the U.K. including the Little Foundation, Action CP, CP Cymru, CP Scotland and Adult CP Hub to speak with one loud voice on medical and societal issues that affect people with CP and their families. 

    We will keep banging the drum about CP. :)

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Charl73Charl73 Member Posts: 26 Courageous
    Richard_Scope and Tori_Scope for all this useful and reassuring information.  I'm so glad that there is more awareness out there than I thought.

    I will take a look at them all and will also try to join the virtual cafe at some point too.

    We'll bang those drums big and loud  :) 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Charl73
                          How are you? Firstly, welcome to the community and thank you for joining us, it's great to have you here on the community. I can see that many of our wonderful community members have provided you with useful information. If I may, I would please like to share this with you. I have CP as well and I know I found it really hard at 17 to accept I firstly needed a stick and then crutches before becoming more reliant on my wheelchair in my early twenties. However, when I finally accepted the use of these aids, my world opened up. I still have bad days but I think that's just being a human. I now generally accept that these aids support me to live my life the way I want to live it. I really hope your physio continues to help and things improve for you. Please do ask any questions as I'm sure there will be someone who will be able to answer. Thank you
  • Richard_ScopeRichard_Scope Community Team Posts: 2,489 Scope community team
    Hi @Charl73
    Just thought I'd check-in with you and see how things are?
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Charl73Charl73 Member Posts: 26 Courageous
    WestHam06, firstly sorry for not replying sooner to you but I wanted to thank you for your comments. They are certainly reassuring.  I’m finding this community extremely helpful and reassuring, that firstly I’m not alone and that there is help out there.  Take care  :)
  • Charl73Charl73 Member Posts: 26 Courageous
    Richard_Scope, thank you so much for checking in on me!  :) I’m having good and bad days when I venture outside. On Friday I managed to walk round the block with my partner without holding him! If I can get myself going then I seem to be ok but if I have to stop that’s when I freeze and can’t get going again. I’m getting out more or less every day even if it’s for a 10 min walk and I do feel better for doing it.  I did Pilates via zoom this evening which was great.  I just seem to be up and down, never knowing how I’m going to react when I go outside.  
    I’ve  had another physio appointment but this was more to do with my thoughts, a lot of it seems to be anxiety and I’m trying to change my train of thought when I venture out.
    Also Kat my other physio has contacted my GP and she wants to see me to discuss everything further....i’ll let you know how that goes when I can get an appointment.  Hope you’re well, stay safe 😊 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Charl73
                          I'm pleased that you are finding the online community supportivre and helpful in finding useful information, that's what we are here for. I am also pleased to hear that you are getting outside and going for walks as it helps not only our physical health but also our mental wellbeing. It's difficult when we have to challenge our trail of thought but it sounds as though you're doing great and heading in the right direction. I hope that you are able to get a GP appointment soon and please do keep us up to date with how things go. Keep going, you're doing great :) Thank you.
  • mike62mike62 Member Posts: 34 Courageous
    Hi @Charl73
    I can relate to that feeling legs are frozen and don't want to walk. Especially in cold weather or even summer when temperature drops.
    Odd times my legs feel shakey or stiff ,  stressed up maybe at work. 
    I bought a pair of walking poles this year, just happened half price at £33 at craghoppers. They are better than one walking stick because I can raise my body up when when walking in a park. I don't always need them though.

  • Charl73Charl73 Member Posts: 26 Courageous
    Hi @mike62, thanks for your message too.  That’s great about walking poles, I had considered these in the past but was afraid I’d become too reliant on them.  However, I’m going to look into them again. Take care!
  • mike62mike62 Member Posts: 34 Courageous
    My pleasure @charl73 and thanks for the chat. Take care yourself. 
  • Charl73Charl73 Member Posts: 26 Courageous
    Hi! Hope you’re all having a good and safe week! Thought I’d update you on me and to get some further advice from you guys!
    I had a telephone appointment with my doctor today, she’s been with me from the day I was diagnosed and is marvellous. She is suggesting I try Baclofen; a small dosage and see if that helps me.  She will give me a call in 3 weeks to see how things are.  I was suggested this medication when I was first diagnosed but after discussions with my doc and neurologist at the time, I decided to not go on it as my thought was I’ve managed for all these years without any help or medication.
    I’m going to give it a go but I wondered if anyone has any thoughts on this, good or bad please?
    As always thanks for reading and for all your advice, take care  :)
  • Richard_ScopeRichard_Scope Community Team Posts: 2,489 Scope community team
    Good morning @Charl73
    I doing well thanks. Not a fan of the dark at 4:30pm thing but it happens every year!

    I don't take Baclofen myself yet but I know dozens of people that do. Baclofen is good for dealing with spasticity and some nerve pain. I know a lot of people that take it just before bedtime, to help reduce spasticity and spasms at night and improve the quality of their sleep.

    It is worth taking your GP's advice and trying a low dosage to see if it benefits you. If it doesn't you can stop taking it and explore other options.

    Do let us know how it goes.

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Charl73
                          How are you? Firstly, I'm pleased you have managed to have a conversation with you GP and as @Richard_Scope has said it is also worth taking your GP's advice, and you can always explore other options if it doesn't work for you. I can only share with you my own experience and as I'm sure you can appreciate it is unique to the individual. I was prescribed a low dosage of Baclofen a few years ago and, along with other medication, it
    helped to ease my spasms and  some of the pain I was experiencing. I feel it has helped to managed elements of my CP and hope that it is able to do the same for you. Please do let us know how things progress. Thank you.
  • Charl73Charl73 Member Posts: 26 Courageous
    Hi @Richard_Scope and @WestHam06, thank you both for your messages  :) Well I went to pick up my prescription today and managed to try the physio tip of counting steps as I walk, it helped a little bit but then I had another freezing wobble and grabbed my partners hand. I’m getting so frustrated with myself which I know isn’t helping.  Tomorrow’s another day so I’m sure it’ll be better. Take care!
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Charl73,
                       Firstly, that's great to hear that you tried the physio's tip of counting steps as you walk, it shows you are willing and determined to overcome the difficulties you are facing, good for you :) I imagine that it must be frustrating but when we are trying to change our trail of thought about anything, I find it takes time and practice. It sounds as though you are doing all the right things and hopefully the Baclofen will start to help. Please do keep us updated, best wishes. Thank you. 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,489 Scope community team
    Hi @Charl73
    How have you been getting on with the Baclofen? 

    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Charl73Charl73 Member Posts: 26 Courageous
    Hi, thank you both for your most recent comments. I started to take it on Saturday; just half a tablet once a day for the first couple of weeks.  I’m not sure if it’s doing anything but I did go for a walk on Sunday; admittedly it was within a forest/downs so it was on grass/soil but it was a little bit uneven. I managed to have a lovely walk without grabbing my partner to much, plus I managed to walk the length of a car park much better and unaided. So I was feeling quite chuffed with myself.
    However, I need to find a better work/life balance with CP as I’ve not been out for a walk this week! I’m having a lot of pressure/difficulties in work; which ironically can make my right side become more rigid.  Hope you’re all ok, take care and catch up soon  :)
  • GeorgiacdonGeorgiacdon Member Posts: 33 Connected
    Hi @Charll73 Glad to hear. Last January I was working part time 4 days a week for a small charity and was struggling so I asked if I could half my hours to 2 days a week. It was the best thing I did, I have now got a much better work life balance and have more energy to do the things that matter. So good luck.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Charl73
                          Firstly, well done you and I am pleased that you were able to enjoy a walk in the forest/downs, it is always great when we can get out and enjoy the fresh air :) In my personal experience, the Baclofen took a little time before I started to really notice a difference so I hope that you are able to continue to take it and that you are able to notice a difference soon :) In terms of getting a work-life balance, it is so important, not only for your health but also for your wellbeing in my opinion. How would you feel about trying to open up a conversation with your employer about this? I often find, in my own experience, when I am under pressure or feeling a little stressed my body is a little more rigid and I experience more spasms than usual. I hope that you are able to find a positive way forward in terms of your work/life balance and please do continue to keep us updated with regards to the Baclofen. Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Charl73
                          How are you? I hope that the Baclofen is working and that you are experiencing improvements. I also hope things have improved on a working front. Merry Christmas :) Thank you. 
  • Charl73Charl73 Member Posts: 26 Courageous
    Hi @WestHam06 and @Georgiacdon, thank you for your comments and for not forgetting about me!  I've not had a good 3 weeks, work hadn't got any better tbh it got worse, in that they are not recognising my capabilities.  I kept going for a week but then it just was making feel so anxious and I really wasn't in a good place.  I spoke to my GP and was signed off for 2 weeks with anxiety.  I went back to work last week and explained that I can do my role extremely well but it was the way they are dealing with me that isn't helping.  They expect me to be faster at my role.  Again, I'm trying to explain to them how I'm feeling but it's a battle.  Also my GP has suggested that I come off the Baclofen as it can cause anxiety and I'm now on anti-depressants.  I've never had such problems in my working life but I'm determined to fight for what I feel is right.  
    Thank you again for all your support and I would like to wish you all a very Merry and safe Christmas :-)
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Charl73
                           I'm sorry to hear that you have had a difficult few weeks, I imagine it can be quite stressful dealing with all these things at once. I also respect your determination to fight for what you believe is right, good for you :) I also imagine it can be so demoralising trying to express your point of view and feel you are not getting your voice heard. It is so important, in my opinion, that employers recognise each individual's capabilities as well as ensuring that they are having their needs meet to enable them to share these capabilities with the company. I am really sorry that you feel your employers are not doing this. I really hope things start to improve for you in the coming days and week's ahead. You know that the community is always here for you. Merry Christmas :) Thank you. 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,489 Scope community team
    Hi @Charl73
    I'm really sorry to read about your recent difficulties. Could I ask what your job is? It might also be worth contacting Access to Work as they can provide equipment and things to make your job a little easier. 
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Charl73
                           How are you? I hope that you had a good Christmas and New Year? Please may I ask, how are things for you at the moment? Thank you. 
  • Charl73Charl73 Member Posts: 26 Courageous
    Hi @Richard_Scope and @WestHam06, thank you for your messages. I work for as a Customer Specialist for an airline.  I’ll have a look at Access to Work; thank you.  Although I’ve got the equipment I think I need, the main issue is that they now are saying I’m not producing enough work (hitting targets), however they can’t fault the work I’m doing.  Occupational Health and my GP have agreed that I won’t be as fast as others and so Occupational Health did reduce these slightly but are still not achievable.  I’ve got another Occupational Health appointment this week, so we’ll see how that goes. Hope you are both well and safe.  Happy New Year and thank you again  :)
  • Richard_ScopeRichard_Scope Community Team Posts: 2,489 Scope community team
    Have you spoken to Occupational Health about Reasonable Adjustment? It doesn't always have to be things to do with the physical working environment. It can apply to tasks etc. There is information about it here in Finding Work that Suits your Life and Condition

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Charl73Charl73 Member Posts: 26 Courageous
    I had a long appointment with them yesterday, which I found was abit of a battle! They do agree with reasonable adjustments but believe that I will hit the targets in time. However these targets are unrealistic to other members of the team so for me it’s even more so.  I work as fast as I can to the best of my ability. I will certainly look at the link, thanks again @Richard_Scope  
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,033 Pioneering
    Hi @Charl73
                           I'm sorry to hear that the appointment was a bit of battle, I imagine that must have been frustrating for you. As you say you are working to the best of your ability as quickly as you are able too and it's a shame they are not willing to be a little more flexible in their approach to reasonable adjustments, it's one thing to agree with reasonable adjustments, it's another to ensure that this is happening in order to meet individual needs, in my opinion. I really hope that the links @Richard_Scope has shared are useful and please do continue to keep us updated. We are here to support you. Thank you. 
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