Lockdown, homeworking and CP
Charl73
Member Posts: 30 Courageous
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.
Replies
Scope community team
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
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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.
Scope community team
How have you been finding Zoom pilates?
Let us know how you get on with the physio
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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
Scope community team
I'm glad you're still sticking with the pilates! As you say, there's no excuse not to go now
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:
- Adult CP Hub, who also run events
- Scope and CP Sport's virtual CP cafe for those aged over 20, which runs every Monday from 4-5pm
I agree that it's really important to raise awareness of CP in adults. Did you have any ideas in mind?Want to give us feedback? Complete our feedback form now.
Scope community team
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.
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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
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
Scope community team
Just thought I'd check-in with you and see how things are?
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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 😊
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
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.
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
Scope community team
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.
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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.
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
Scope community team
How have you been getting on with the Baclofen?
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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
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
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 again for all your support and I would like to wish you all a very Merry and safe Christmas :-)
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
Scope community team
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.
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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.
Scope community team
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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.
How are you? How are things going? I hope that there have been some improvements for you. Thank you.
I'm pleased to hear things have improved slightly at work but as you say it is important to see how things go and monitor things. It's a shame to hear that they are putting lots of pressure on everyone, though sadly, I feel this is something lots of employees from varying companies are experiencing due to the pressures caused by Covid-19. That said, companies should still be ensuring they are meeting all statutory requirements and statements set out in their policies. I hear how frustrated you are with regards to having good and bad days in relation to your walking but it's helpful that you recognise that this isn't always helpful. Please remember, we all have good and bad days and that's ok. Please do let us know how you find hiking sticks and whether you feel they are for you long term. I hope things continue to improve. Thank you.
Scope community team
How are things, did you go for the hiking sticks in the end? I'm feeling quite positive that there may be light at the end of the tunnel, I had my first vaccine last night and the sun is shining. I might be getting ahead of myself but I'm going to run with it!
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How are you feeling today? My arm is feeling tender but otherwise I feel great :-) Take care :-)
Scope community team
Specialist Information Officer - Cerebral Palsy
Want to tell us about your experience on the community? Talk to our chatbot and let us know.