Hi everyone, I’ve lurked here for a while but this is my first post.
19 weeks ago tomorrow my wife, our 16 year old daughter, our cocker spaniel and myself went to an outlet village shopping for our daughters birthday. I dropped them all at home and went back out to get a takeaway for dinner. I telephoned my wife to tell her I was on my way back and had a perfectly normal conversation with her, 8 minutes later I walked through the front door to find my wife unconscious on the kitchen floor. From that point on our lives have been a rollercoaster !
The 999 service were absolutely fantastic, they stayed on the line and told me exactly what to do until the paramedic walked through our front door 12 minutes later, the ambulance arrived a minute after him. Once they had stabilised her off we went to the nearest A&E where a scan confirmed she had suffered a heavy bleed on her brain and arrangements were made to take her to the Walton Neurological Centre which is about 20 minutes away. At 9.30pm, just over 3 hours after me finding her, she was in theatre. At this point I thought we had done really well and been so lucky that everyone involved had acted so fast.
Once she had been moved from theatre into ITU I was allowed to see her, what a shock, life preserving machines all around her bed and my wife of 24 years lying there motionless and unconscious. I stayed for a while and then in the knowledge that she was in safe hands I came home to get some rest.
I returned to ITU the next morning and was approached by the consultant, she told me that we were extremely lucky and that because of the size of the bleed only 3 in 10 people would actually make it to hospital. I felt extremely happy and proud that all the actions by myself, our daughters, the emergency services and the surgeons had saved my 49 year old fit and healthy wife.
She spent the next 5 weeks in ITU, during that time she had lots of infections, chest, bowel etc, but eventually she made it to a ward. As she still had medical needs it was a medical ward rather than a rehabilitation ward, she spent the next 12 weeks there. Again there were lots of complications, chest infections which hindered the trachy weening etc until one day she decided herself that enough was enough and she pulled out the trachy. It was panic stations, doctors and chest physios running around, but she’d done it and there was no going back.
Getting the trachy out seemed to improve her massively and within a couple of weeks of removing it she was moved to stage 1 rehab where she has been for the last couple of weeks.
She has a lot of problems now though, cognitive and physical. She is easily distracted, she has aphasia and she has problems with her right arm and leg.
In the 2 weeks she has been on a rehab ward they have worked out the problem with her right arm is from pain in her shoulder and her leg problem is pain in her hip and ankle. She has now started to move her right arm and leg and she has started to talk, although most of it is gibberish. But, she knows it is gibberish, she realises it and then says “for gods sake”.
She’s knows who we are, she has said my name, she’s said both our daughters names and even our dogs name, so there is something positive.
The physical problems we can live with if we need to, it’s the cognitive problems I’m worried about, after 19 weeks she’s still not ‘with it’ and I’ve read the biggest improvements are usually seen in the first 13 weeks.
I know 19 weeks is a short period in comparison to what the recovery time can be, but can cognition continue to improve beyond 6 months, 12 months etc ?
welcome @SteveWc9 , sorry to hear about your wife’s stroke. Like @Loshy I’m still making progress over 18 months after my stroke. I know they say the first few months are the most important but every stroke is unique so recoveries will also vary from person to person. All I can say is keep trying and be there for her. It is a really difficult situation for all of you and there will be ups and downs along the way.
Try to stay as possitive as possible. Your wife is young and was fit so there’s every chance she can make a good recovery. It can be frustrating when it doesn’t happen as quickly as you want.
Good luck and remember we are here to help answer questions from our own experiences (& research in some people’s cases).
I wish your wife and you all the best
Mark
Shwmae @SteveWc9, sorry to hear your wife has experienced a stroke, and it sounds like all things came together to get her quickly to the attention of medical professionals. Every stroke journey will be different, cognitively I turned a corner after two years of not knowing whether I was coming or going. In theory, cognitive improvements can be made all throughout life after stroke, unless there is a degenerative neurological disorder either acquired by stroke or as an unrelated condition. Nineteen weeks can be a ripple in recovery, the brain is still doing it’s own self repair (plasticity) for at least six months, and then things may plateau, but it’s important never to stop working on cognitive rehabilitation. Indeed, I would say that is beneficial even without a stroke being the reason for cognitive exercising. At this stage of your wife’s rebuild journey, lots of sleep and rest is essential, not to push too hard, just love and care really. If you are aware of the symptoms that require rehabilitation, make a mental note and start that now. As gently as possible as not to stress the brain. Also, a post stroke diary is really useful for monitoring progress and milestones. For me, improvement over two years was about 1-2% each time, with the occasional 15% upswing which was more noticeable.
I am still working on some cognitive issues such as recognising patterns in things &c. However, keep in mind that the physical symptoms are also cognitive even if they appear deceptively physiological.
Thanks for your replies so far.
I do sort of keep a diary, since a few days after this happened I send a daily WhatsApp message to my wife’s phone, just a note of what has happened each day. I have found that useful at times to realise how much she has improved.
We now have a monthly goals meeting, the first one was last Wednesday. I will be given the minutes of each meeting to keep and look back on.
I find that when I see her every day, most days twice a day, it is difficult to see the small improvements, but having something to look back on makes me realise how much she has come on.
Steve, what a hell of a journey you’ve both been on. Improvement will come but it comes slowly. My stroke was seven years ago, but a cousin of mine had a major stroke in July. She lost all speech , but it started to come back. As she improved her lifelong speech mannerisms came out perfectly but other words either couldn’t come out or came out as other words than she intended. Interestingly her understanding came back completely, but her responses are taking longer. When I visit I let her talk, even if nothing makes sense and I update on news and family things and try to make her laugh. I hope you all have better times ahead.
@SteveWc9 welcome to the forum. Thats some journey you’ve all been through already & a lot more to come yet too. Progress can continue to be made for years so don’t worry too much at this early stage. The road is different for everyone but with patience & determination i’m sure more gains will be made.
Wishing you all the best.
Ann xx