"A mixed recovery"

In July 24, I had 2 TIA’s and then I was admitted into Wishaw General Hospital with a suspected stroke. It was a scary time for me because my dad’s side of the family have a history of strokes and my dad himself was paralysed from the neck down through a stroke.

After multiple tests the Neurologist decided that it was most likely FND. I don’t believe that my diagnosis is accurate, I still don’t. I may have FND however I still wholeheartedly believe that I have had a clinical Stroke! I struggled to speak, eat and walk and have had to relearn to do everything again.

When I got out of hospital the HAHT team that I had were amazing. My Physio and OT was fantastic and I began to make progress with them, it was tiny steps but they were there for me and I trusted them 100%. 

So after the 2 weeks with them, I really believed that I could possibly have a future. I assumed that the Stroke Rehab Team would be just as good. For the most part, this wasn't the case.

I felt the staff that I got weren't that good. They just didn't seem interested. I had 3 appointments with them and I didn't achieve anything. A staff member did a home assessment and I received nothing. I got absolutely no help and no aids. In the hospital I was told that I would get a wet floor shower put in and various things in place to help me live independently. I got nothing. They offered me a carer, which I didn’t want. I want my independence and dignity. It felt that as soon as they realised that I wouldn’t be dealing with a carer (these would be the same carers that attend my parents) they weren’t interested. As it stands right now, I haven’t had a shower since I left hospital in August 24! They did try a bath lift and a bath seat with a back on it but it didn’t fit my bath so their solution was to do nothing at all. I still need a Wet floor shower installed.

The physio and OT from the HAHT team gave me a walking frame with a caddy on it to help me to walk in the house and carry my plate. A staff member from the stroke rehab team, whom I hoped was going to help me to walk again, didn’t. They didn’t even give me anything to try to walk outside. I decided to save up and purchase a relator myself. Even with the relator, I can still only manage about a dozen steps outside. So over a year later, I still haven’t had a shower and I still can’t walk!

On the other hand, I was so fortunate to get a wonderful Speech Therapist, she was absolutely amazing! My speech was almost illegible and I think she initially thought wow, where do I even start. Not only was I seriously struggling with my speech but also with my eating. I had a real problem with swallowing and choking. I am still on a soft diet and can manage anything sloppy and with a lot of sauce but I know what I can manage and what to avoid and as long as I follow her guidelines, I don’t choke anymore. So that’s my eating, what about my speech? Well my speech has come on amazing, Kirsten really took the time to get to know me and what I needed and helped me to find techniques that worked for me. Now my speech is almost back to normal and Kirsten believes that with time it will be back to normal.

The other person who was crucial in my being able to process everything and help me to find a way forward was my Neuropsychologist! He really was dedicated to helping me find a way to deal with what had happened and to find a way forward. Unfortunately, I was unable to attend his group sessions because I couldn't walk and I still can’t and patient transport didn’t go to the centre where the sessions were held. He was dedicated to still try to help me so his solution was video calls every few weeks. I have now had to finish my sessions with him because he had taken me as far as he could and I believe that had the Stroke Rehab team done their jobs, I would have been much further on in my progress.

It feels like for some reason, they seem to be against enabling people to live independent lives.

My Speech Therapist and Neuropsychologist were amazing and that’s the areas where I have made progress.