Lockdown, homeworking and CP

Charl73

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.

Georgiacdon

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.

Charl73

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_Scope

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

Georgiacdon

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_Scope

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.

Chloe_Scope

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.

Charl73

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

Chloe_Scope

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.

Charl73

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_Scope

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  

Charl73

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_Scope

That would be great @Charl73, we'd love to hear how you're getting along with it  

How are you doing today? 

Charl73

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_Scope

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  

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? 

Richard_Scope

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.

Charl73

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   

WestHam06

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_Scope

Hi @Charl73
Just thought I'd check-in with you and see how things are?

Charl73

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 

Charl73

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 ?