Help Please

anjb

Hi Everyone. My names Anjela.  I was born with Cerebral Palsy. In 2019 I had a small injury to my left foot using a foot massager which left me with chronic nerve pain.  Two weeks I later I noticed my left toe turned outwards and altered the position of my foot to turn more inwards when walking. Within 3 months I noticed my knee bending in more and having less strength in my leg. I was prescribed Gabapentin but it wasn’t helping. Spoke to a neurologist 4 months later and kept me on Gabapentin and increased the dose. In the meantime I noticed my left leg was getting weaker and weaker and the nerve pain spreading higher up the leg.  Finally after 8 months the neurologist prescribed Duloxetine and I noticed the different a couple of days of taking it. But, it was too late as my left leg gave in and I started limping when walking and finding it difficult to keep my balance.  Four months later I had extreme pain in my left butt cheek and was prescribed pregablin which didn’t help and tightened my leg muscles.  I remember telling my gp I feel like I’m walking like a ballerina. One month later my left butt cheek collapsed and the following month my right butt cheek collapsed. Since then I can’t walk on my own and in a wheelchair. My neurologist kept on saying what ever is happening is CP related and didn’t listen to a word I said, kept saying I was waiting for a miracle to happen. I feel neglected and not listened to.  Every day I cry, I’ve gone from being independent, a driver, a worker to dependant, no longer drive or go out on my own. I’m stuck indoors 24/7. I suffer with severe depression and can’t accept what has happened to me. I’m grieving a life I once had and I want it all back so badly that I no longer want to live this life. Nothing matters to me any more. I’ve lost passions in everything I used to do because I can no longer do the things I love. My body has changed and my my posture has changed. I live with unbearable pain everyday. I can see my body is aging and I can feel it as well.  The change is posture has led to shoulder and arm pains, incontinence and I can’t feel my muscles.  I feel lost. Please help as I’m loosing the will to live. 

Tibik

A couple things to try-
- See a specialist physio and occupational therapist- ask your neuro for a referral and if they refuse, make a complaint.
- Ask for an assessment at the regional driver assessment centre (if you have a motability car, ask through them) as you may be able to drive with hand controls, or a vehicle you can drive from your chair.
- Make a complaint about your neuro, and ask them to explain why they do not seem to be listening to you. Ask them to explain, in detail, why this sudden change in function has occurred. You can ask for these things as your expected outcomes. Ask what help you can get to restore as much function as possible
- Speak to your GP about your changed function and frustration- ask for their help and support
- Ask if a spell in rehab would help.

I can't imagine how frustrating this is for you, although I have an inkling as I have a neuro problem that has reduced my mobility. I love my wheelchair and my wheelchair vehicle because they are like my wings- they give me freedom. It was however hard to accept I needed them.

You can also speak to your Council about a Disability Facilities Grant or DFG- they can, in certain circumstances, add adaptations to your home to make it easier for you. Widen doorways, put a downstairs wetroom, add a patio, etc. You can be a homeowner, a council tenant, or an HA tenant, or a private tenant (again, in some circumstances). 

I hope you can get some help to make things easier and to help you regain your feeling of independence.

Adrian_Scope

I'm really sorry to hear how much all this has been impacting you and your mental health @anjb. It sounds like you've been through a great deal and are really struggling with physical pain, changes in mobility, and a sense of loss for the life you once had, I think many would say it's understandable that you're feeling overwhelmed.

First and foremost, please remember that you're not alone in this journey. There are resources and support networks available to help you navigate these difficult times. There are some great ideas above from @Tibik and I'm going to tag our cerebral palsy specialist @Richard_Scope in case he has other suggestions for you. 

Have you spoken to a GP or any other specialist about how much this is impacting on your mental health?

Remember, it's okay to ask for help and to lean on others during difficult times. While it may feel like your world has been turned upside down, there are people who want to support you and help you regain a sense of purpose and happiness. Please don't hesitate to reach out to professionals who can guide you through this period.

Take care of yourself, Anjela. You matter, and there are brighter days ahead.

anjb

Tibik said:

A couple things to try-
- See a specialist physio and occupational therapist- ask your neuro for a referral and if they refuse, make a complaint.
- Ask for an assessment at the regional driver assessment centre (if you have a motability car, ask through them) as you may be able to drive with hand controls, or a vehicle you can drive from your chair.
- Make a complaint about your neuro, and ask them to explain why they do not seem to be listening to you. Ask them to explain, in detail, why this sudden change in function has occurred. You can ask for these things as your expected outcomes. Ask what help you can get to restore as much function as possible
- Speak to your GP about your changed function and frustration- ask for their help and support
- Ask if a spell in rehab would help.

I can't imagine how frustrating this is for you, although I have an inkling as I have a neuro problem that has reduced my mobility. I love my wheelchair and my wheelchair vehicle because they are like my wings- they give me freedom. It was however hard to accept I needed them.

You can also speak to your Council about a Disability Facilities Grant or DFG- they can, in certain circumstances, add adaptations to your home to make it easier for you. Widen doorways, put a downstairs wetroom, add a patio, etc. You can be a homeowner, a council tenant, or an HA tenant, or a private tenant (again, in some circumstances). 

I hope you can get some help to make things easier and to help you regain your feeling of independence.

anjb

@Tibik thank you so much for your comment and advice. The neurologist - I’ve given up on her! My GP has been so supportive but even he’s given up because no one is willing to help me and just labelling me with Cerebral Palsy. I did see a neuro physiotherapist but she wasn’t much help either when it came to building up strength in my legs. Just the usual handout exercises but no alternatives when I told her I can’t do them. I ended up having an argument with my husband and the neuro physiotherapist because both kept laughing and pushing me to do excercises I could not do and then saying I’m not putting in any effort. She used to laugh a lot as well and I hated it. I felt lost and didn’t know who to talk to. She then discharged me and said there was nothing else that could be done to help me. My neurologist indirectly wrote a letter to my GP saying that I’m expecting a miracle to happen which will not and that I’m making my symptoms up. I only came across this letter when I asked for evidence to send to PIP and I was very hurt and it kind of explained why my GP said to me only I can help myself and no one else. 

I’m really struggling with accepting how I am walking now. It’s very painful and I can’t walk. I’ve also experienced the difficulties being in a wheelchair and doing things by myself like going shopping etc I have to say retail is not the most disabled friendly industry when it comes to helping people in wheelchairs. I find it very frustrating being stuck at home and not being able to do the things I love to do. I am having counselling sessions but these are not really helping me. I had two weeks where I felt really good listening to positive affirmations etc. but it didn’t last long. As soon as I get up to walk I’m reminded there something wrong with me and I hate this life. I had so many dreams going on holidays etc and these are all shattered. I see people walk and it kills me inside and I can’t get rid of this feeling. I really don’t know how I can help myself. I have a husband and although he’s trying his best I feel like he’s not helping me.  I am having Physio at the moment and I find it helps but then my body goes back to walking the old way which overrides all the good I’ve done and this really upsets me because I feel I will never get better or build strength in my legs and walk.  

Richard_Scope

Hi @anjb
It's great to virtually meet you! And thanks @Tibik for the great advice.

You are not alone in feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.    

We CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue.   

The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy etc.   

There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. 

Here is an excellent blog post about it:   

What Post-Impairment Syndrome Means to Me   
 

What I would advise is that you book an appointment with you your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And get a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer to UCLH Cerebral Palsy Service. You may also want to consider a referral to the Bobath Adult CP review service that was created with the support of Scope. 

Tibik

I remember when I got my wheelchair. I despised it and everything it meant...

That was in 2007. I don't feel that way anymore. I think my assistance dog was the biggest help, but in general, once you "surrender" to the things you cannot conquer (sadly something people with disability have to do...) you have more energy to deal with the things you *can* fight.

Take a shop... you're right, they aren't made for people like us. Those horrid self-service checkouts are a right royal pain in the tush. So, I go to customer services and say "I need one of your staff to go around the store with me and assist me with my shopping". Do you know they will do it? I do that when the store is full of packing trollies making it impossible for me to get around, and I always ask for help at the self-service checkout. Do I like not being able to just get on with it and do it myself? Nope. But, I don't have spoons to waste just because they don't get it. Don't be afraid to tell them what you need- it's their responsibility. If they don't, complain complain complain... you always get very nice vouchers, and the store gets told to help you from their head office.