Hi, my name is Kelly. The last year has been really hard for myself and my husband….

Last April, my mother-in-law in had double sepsis and double pneumonia and she decided she didn’t want any further treatment. She then went into a Nursing Home where five days later where with Simon and myself she sadly passed. It was really traumatic. We sat with her for almost 5 hours holding her hand and talking to her.

Then a couple of weeks later, Simon was taking me down the stairs of our flat on a stair climbing device ( which is kind of like a cross between a Wheelchair and a stairlift ) he was exhausted after the events leading up to his Mother’s death and he slipped about seven steps from the bottom dropping the stair climbing device and myself down the stairs. I hit the bottom and then he fell down the stairs as well landing his full body weight on my head and neck and shoulders.

Shortly afterwards, I had my first tonic clonic seizure ( I had been having non-epileptic seizures for a couple of years now but they were always either slight jerking seizures or drop seizures until this point ) however on this point onwards they became full of tonic clonic ! And for when I hit the bottom I started to go slightly numb.

We went to the hospital by ambulance and they said that the seizure was just non-epileptic and did a CT scan and said not to worry about the numbness. I saw my GP who referred me to a neurologist which I saw in July 2025 and they arranged for me to have a EEG, but the date hadn’t been arranged.

Then on the 14th of August I woke up with shooting pain in my head that went over my head and down the back of my neck. I phoned my GP and told them about this and they said it probably just a migraine. I took some migraine tablets as directed and carried on with my day as usual.

The next day I woke up the same pain in my head but I felt really weak at about 6 am. I told Simon about this he said to rest and see how I felt when the Carer came at 9 am. I fell back asleep so at 9 am, I woke up and had a wash, etc. I managed to go into the lounge and at 11 o’clock the Carer left I went back into the bedroom. I don’t remember what happened whether it was seizure or if I blacked out but when the carer came back at 12:30 she woke me up and I couldn’t move anything from the shoulders downwards or feel any temperatures, etc

We phoned the GP who said it sounded like a stroke and to call 999 ; we called 111 as I didn’t want to call 999 and 111 said again it sounded like a stroke and they called an ambulance who took me to hospital.

I stayed in Hospital for eight months and 10 days and was diagnosed with severe functional neurological disorder with functional limb weakness, functional torso weakness, and functional movement disorder. They tried to get me into a rehab centre for FND but the waiting list are incredible! With Nhs ones it can be between two and four years so they tried to get me into a private one funded by Nhs. I was refused four times being too complex and they stated that I would not make enough progress in the time that patients were usually there, which was usually eight weeks that I would there.

In the time period I was in the hospital I managed to get movement of my thumbs and my toes and some other Small movements but very little!

I came out of hospital on the 24th of April this year with 24 hour Care ;one person and about 4 1/2 hours a day for second person. I am unable to do very little for myself but I do try.

One of my main things I want to do is to be able to use a computer. I used to build computers when I was fully able bodies and I would like to be able to do basic things on a computer again like banking or write an email or I think like that I mean a lot to me as computers have been my life since about the age of 16.

I have been looking at Eyegaze or Tobii hardware but the prices are very expensive, but I just want to be the Kelly I was before and I just want to have some independence back again. I just want to be the ‘me’ I used to be the one way or another!

The senior neuro physiotherapist have been working on my upper limbs with a nerve and muscle stimulation device which they lend for up to 6 weeks and then you need to buy your own. After several weeks the neuro physiotherapist says there are ‘flickers’ in my muscles which a good sign even they are very small baby steps; this still progress

One of the main things we need for me to be able to function normally is a Wheelchair accessible vehicle which are available on PIP (personal Independent payments) but there is a large downpayment that needs to be paid first yes you can get grants to cover this but again because Simon works we are unable to claim on this; I just want to have a normal as possible life to be able to go out and do normal things to be able to go shopping to be able to go see friends to go to Church to feel normal! Damn payment for this is in the region of £6000! Which is incredible! I don’t know how they expect people to pay for this

Other things I’ve been looking into are raised beds for the garden as well as there are some things that need to be done to the bungalow to make it more accessible for me; we have had a lot of work done on the bungalow which we were able to fund either through money we had ourselves or from Help from family or from very kind friends but any work that needs doing that remains unable to get help because Simon works, we are unable to get grants.

I do at current have a wet room and a Ramp to get in and out to the property, I can’t even get through the back door at the moment as due to the layout of the kitchen there is a unit which makes the gap through to the back door to Small to get my Wheelchair through! Meaning at the moment there is only one fire exit out at the bungalow through the front door and the Ramp.

One other thing I’ve been thinking of is having the garden paved over either totally or halfway so it’s easier for my Wheelchair to go out there because at the moment in the winter our garden is like a swamp that’s the words my husband used when I was in the hospital!

also at the moment, I can’t actually get through all of the doors of the bungalow. I can go through my bedroom door because it was widened for the Wheelchair as it’s a neurology specialist Wheelchair I could also get through the lounge door and the front door, but I can’t get through the bathroom door or the spare bedroom door or the kitchen door which need to be widened and may have to have your doors put on!

At the moment my bedroom doesn’t actually have any Door on it at all and we are trying to find a curtain and a pole to put it across it to give me some dignity!

Also part of my FND is that I have seizures and I require suctioning which is part of my seizure management plan written by the hospital; at Home I have a suction machine which is amazing and stops me getting aspiration pneumonia although in Hospital I had Hospital acquired pneumonia four times in 8 1/2 months!! and I’ve had a chest infection already since I’ve been home which may or may not have been pneumonia! An item that would make a big difference to my life, especially when I’m going around and about when I get the WAV ( Wheelchair accessible vehicle ) would be a portable suction machine as otherwise it could be dangerous when I have seizures and I would be more likely to get pneumonia whilst going out and about

I do realise how blessed we are to have what we do have don’t get me wrong it’s just sometimes you have to reach out to other people for help and I apologise if I offend anybody by doing this.