Two years ago I was rushed to hospital with a suspected stroke. I was thrombolised and told on the Wednesday I had suffered a stroke. By the Monday I was told that it wasn't a stroke and it was in fact FND (Functional Neurological Disorder). A disorder of the brain send the wrong signals - thought to be caused by stress or trauma. As there are no obvious causes, I have been treated as though I was making it up.
Two years of no support, I have recently had an MRI, which shows I did in fact have a stroke. I did have physio and saw a speech therapist twice. I have left sided weakness, difficult speech and swallowing. Concentration and memory is bad.
Due to the lockdown I was notified by letter from my new neurologist. I understand this but there is no explanation, only instruction to my doctor (who's attitude towards me has suddenly changed for the better) to refer me back to the stroke team and to go onto a blood thinner.
Sorry for the long post, but my question is- is it too late to improve my situation?
The first two years is often the period of best recovery, but thats not an exact science.
I have had lots of recovery in years three and four. The best results in these later years came from seated yoga. A brilliant yoga teacher sorted out lots of my issues. Yoga looks at things differently and compliments traditional measures.
I am already being treated for Depression and anxiety. This has done nothing for my anxiety and feel like yet again I've been left trying to handle this on my own. Dont get me wrong, my husband has been fantastic - but I don't think he really understands my thoughts and feelings. Yesterday I went out with friends and they were talking about doing this, that and the other and all I could think was I cannot do that. Regardless of the diagnosis, I'm still in my wheelchair with nowhere to go ?
Glitter Pink - love the name, very jealous that I didn't think of something like that!!! Just to try to offer some words of encouragement, I know that there have been stroke survivors on this site who were using a wheelchair, but eventually they progressed to a walker, then a stick. I believe it was a process that took some years, but eventually they did it, so please don't give up hope. Hopefully someone will notice the post and tell you their story.
I know your husband will be struggling to fully understand your feelings - the trouble is, no matter how hard we try, we cannot truly say we know what it feels like to be living post-stroke. Only another Stroke Survivor can empathise with you. We can see the effects of stroke and do all we can to support, but it will never really be enough no matter how hard we try. I'm not sure when you suffered the stroke, but it does seem that things improve with time. Try to keep in touch with your friends, it is so important, although not easy. We have found it difficult, because we can't make plans in the same way that our friends can - we just never know when the dreaded stroke fatigue will kick in. So everything has to be flexible. I never book anything which doesn't allow me to get my money back if we can't keep the date - whether it's a hotel, theatre, restaurant etc, I always check that I can wriggle out of it if needs be!!
Stay strong, give yourself plenty of rest and use this site for support. There are some amazing people here with inspirational stories to share, they will always support you. Take good care xx
Stroke will usually cause a bout of depression. For those of us who have had depression, we know exactly whats happening. If the depression gets a grip then it will slow the stroke recovery a great deal.
we need to treat the depression just like we did before stroke. Self willpower, then counselling and medication.
With depression you are not on your own. Many experts are around to assist. Many people do understand depression. But you and I know that we need to help ourselves.
Stroke is less well understood. Again, we know we need to help ourselves.
Us SS really do need to promote our own recovery. Take all help that becomes available. But we need to make the effort ourselves. Spouses can not possibly understand what we go through. Would we really like them to experience a stroke ? I dont think so.
I try hard to look at what I can do and not what i can not.
so smile many times each day
be positive
and remeber lots of us our out here..you are not alone