Cerebral Palsy and Coronavirus (COVID-19)

Welli

Hi Richard, 

Thank you so much for your reply and for being their for us all at this time.  I didn't think for one minute I am alone in the situation of being 'missed' that is why I have highlighted this problem with my local newspaper as I realise there must be thousands of us out there. 

I will go to the link regarding accessing provisions whilst isolating. 

Once again my sincere thanks and wish I had known about this website a long time ago .

Richard_Scope

No problem @Welli, it's brilliant that you are a member of the community. Keep well and if you need a chat, let me know! 

Katiegps342

Hi Everyone on the Scope help team. 

I am living with CP and have done so since birth. I'm a semi - permanent wheelchair user but can also walk with 2 sticks. I also cope with having asthma; causing several chest concerns over the years including 2 bouts of pneumonia, coeliac and other health problems as I have got older. Each year I am invited for a flu jab so when PM said on 16th of March that those who were eligible each year should shield themselves for the next 12 weeks from the 21st of March; that's what I prepared myself to do. 

Unfortunately this wasn't soon enough as on the 23rd of March I was taken ill, had to call NHS direct after taking advice from my local chemist and subsequently was taken to my local a&e for medical and practical reasons as me possibly having symptoms of Coronavirus meant I had to self isolate from my support workers who I employ via direct payments package provided by my local authority and suddenly had no care and couldn't be left at my home on my own. 

After 5 hours I was admitted into hospital and tested for Coronavirus; in the meantime my CP had flared up and I couldn't walk. Doctors couldn't and wouldn't understand and tried desperately to get me home even with no care! Eventually the following day I tested positive for Coronavirus. Why I'm posting this information is to warn people that this virus starts off like an ordinary cold and then hits you like a brick! 

I ended up staying in hospital for 12 days fully in isolation and believe me it has been mentally tough even with all the experiences of health care I have had during my life. I then got moved to an intermediate care home for rehabilitation and have stayed there 13 days; having physiotherepy and constance phone calls with social workers to sort out a care package and continued therepy at home to help me recover to as I was prior to this virus. Today I am finally getting home, but the battle isn't won. 

My concern also is that whilst I received the txt msg regarding the lock down, I have not officially been sent a shielding letter or any contact from my Gp so how I'm I going to access things like shopping online, I know I'll have the care package but that doesn't cover cleaning, laundry and shopping etc. All the charities and organisations are rightly so, requesting proof as it were of our eligibility to assistance, I have none.

Also I know I need and most isolate myself for the next however many weeks even months eventhough I have had Coronavirus. 

If there are any further steps you feel I could take, I would be most appreciated to hear them, it has been said that this situation will unfortunately get heaps worse before it gets better.

Thank you so much for being here you are all heroes. 

Richard_Scope

Hi @Katiegps342, I'm so glad to read that you are on the mend and that you have joined the community.
In terms of further steps, we have some useful information about Food and Essentials during Coronavirus
You are not alone in this, please keep in touch.

Bazalad

LIFING IN LONG DOWN

Hi my name is Barry or Baz and I am 41 years old, with Cerebral Palsy I lived in Ayrshire in Scotland. I am in a power wheelchair and speak with a SL50 which a lightwrighter a voice output communication aide. before long down started I always went out each days with my pa and now we stay in because it isn't safe to go out. I am thank you I have a back door, I can go out for air. see if anyone told me this 12 weeks ago I would say to them "DONT TALK <..

Richard_Scope

Hi @Bazalad, have you received the High Risk letter from the government? If not, you are allowed out for one hour per day whilst observing the social distancing rules.
This something I try to do, just to get some fresh air.