The first 2 weeks were awful. There were many times when she almost went. Vaspospasms.Lung infection.High temperature.Stroke. She was only 42 and I was just 38 (now 39). Been married for 10 years and we had everything going for us; I love my wife and son and yet everything was falling apart. I become emotional and extremely sad when I think back to that day⦠and the evening before when we were both watching a dvd and had planned the following day ahead.
Nearly one month in an induced coma. Woke up but had all the text-book symptoms. Paralysed on her left side.Unable to speak.Unable to drink or eat. Confused and staring into space. I spent nearly everyday crying⦠seeing my princess in this weakened state. After a few weeks she smiled when I entered her hospital room. Her longterm memory was okay; she squeezed my hand, using her âgoodâ right hand when answering my questions. Eventually I had to tell her as she wispered for information. I will never forget her face when I told her. The tears and heartache. The doctors gave a poor prognosis and said that she may never walk again or enjoy an active or productive life. Our son was at home with my father as my mother and I were staying in Trondheim (St. Olavs Hospital). My business was being neglected but at the time, I really did not care about that. Every minute was spent on my wife and the implication this would have on our son, James. How would I tell him? I couldn’t eat or sleep and I would suffer panic attacks and moments of severe anxiety, shaking and just praying that this was a nightmare and wasn’t really happening.
Her short term memory was shot to pieces. Cognitive deficts were severe. She went to a reabilitationcentre after 2 months of the injury (she was too weak to go earlier as she had a problem with a lung infection and suffered from severe coughing). She was apart from me and our son for 5 months. We made regular visits each week (2 or 3 times a week) and had to drive an 8 hour return journey. My business struggled to keep going. It was awful having our son see his mum this way and to answer his questions.
Time passed and she can now walk without any aid (and only with a slight limp and without any outward swing) and can speak to about 70% of her normal volume/tone. She had the feeding tube removed after 7 months (it took a long time because she developed a phobia with swallowing when the speech therapist that she could get a lung infection if fluid went the wrong way whilst drinking). 11 months on and she is thin and weak but can drink and eat (albeit slowly). Her left arm is slowly getting better and she has come a long way but the arm is still lacking in full range of motion and of course is very weak.
Her cognitive deficits remain the biggest problems and in our minds, the most important challenge. She suffers badly from a lack of concentration, attention, judgement, initiative, perception, problem solving, forgetting things (though this has gotten much better of late) and motivation. She becomes extremely tired ever so quickly.
I am grateful for her survival and I could live with the time told to me for her to slowly improve. Maybe even 5 years. However, I was told back in May of this year that she has another aneurysm on her left side. Only very small⦠3mm and that this became known the day after the rupture back in October 2009 (we don’t know how long that had been there as she had never previously had a CT or MRI etc). I never knew of this other small aneursym and I guess the doctors deemed it best not to tell me at the time given my extreme emotional state of mind. The experts say it hasnât grown and that monitoring is the best policy for now.
However, I now know she has another âtime bombâ. Treatment might harm her much more and leaving it is also a bad option. I cannot tell her (not yet, anyway). It will destroy her reabilitation. It will totally sink her. The risk is 1-2% per year of rupture because she now has âhistoryâ. I canât go through this again.
My main reason for contacting you is because I am so enlightened by your knowledge and committment to after stroke care. I can also relate to very much of what you write and how caregivers, doctors and therapsists can at times advise the wrong thing. I became extremely frustrated and angry at the doctors and her reabilitation team when they kept on saying to her, ‘it will take a very, very long time’. I immediately told her afterwards that this wasn’t necessaily the case if she were to train hard and have a positive attitude. I tried to do most of my crying when away from her but I do admit to caving in sometimes.
I basically want my wife back. I want to see her happy. I feel so bad for her and want to make her feel good.
Some days I feel better than others; some of my low days will see me get angry. I have to walk around our house and see photos of our engagemnet and wedding. I see her smile and her happiness. I then see her now and see her sadness and her weakened and fragile state. It tears me apart and unlike recovering from a simple break of the arm or from a broken leg, this is the brain as you of course know and then reality hits me; the centre of everything that makes us function in day to day life. My bad days will see me mutter the words to myself, ‘she isn’t going to get any better now; this is it… this is as good as it gets.’ Why shouldn’t I believe that? Progress in the last 4 or 5 months has been very little… just like the doctors said. As you know and to a degree challenge, the general rule for such cases is that spontaneous recovery via plasticity is greatest in the immediate months following the injury and that this becomes much slower (if at all) thereafter, possible up to 2 or 3 years but with no solid written rules. It is encouraging to read to opinions on how a different approach via VASA can improve recovery.
She is ‘racing ahead’ and is very impulsive. She doesn’t rationalise things as she once did. And above all… this is REAL for me… and my family. It isn’t a story of someone we know. It isn’t a movie. It is real and there is absolutely nothing I can do about it… or so it seems. I have since been trying to pray very hard and of course I now feel guilty about that. Another case of praying when you want something and for that, I feel bad. I TRULY wish that I never took things for granted. I wish we never stressed over trivial things like before. I wish I could turn back the clock. I am grateful she survived. Am I happy? Definately not.
I have tried to pray so hard. Deep moments of thought and prayer. I have done much reading on healing, prayer as well as scientific journals. It seems clear to me that normal reabilitation is not the answer; too long and too incomplete… merely a way of compensating for short comings. I am 39 and my wife is now 43. Our son has just turned 7. MY SINCERE WISH IS FOR HELP… SOME WAY.To make her balanced and in control again.To deal with the root of the problem instead of accepting and compensating for it. Am I asking for too much? We are good and honest people. My parents as well as hers… the whole extended family have been distraught over this and having read some similar stories, I know I should be grateful for her coming this far. I do actually believe that a miracle has happened thus far but it still hurts so so much when I see her so weak and so tired with some confusing moments. She is sad… dwelling on her past capabilities and probably acknowledging that she will not be an active mother to James. This is awful for her and awful for me… to see her with so much heartache. My parents are also very worried about me because I am losing weight and not sleeping but I cannot get on top of things. My wife was my life and she remains my life; we did nearly everything together and she is in the true sense of the word, my soulmate. And I miss her dearly. I don’t want to forget her assertive behaviour or her previous strong voice or her previous input with things. It will soon be 1 year and I feel I need help with prayer and correct therapy.
Her walking is generally good but her big toe on her left foot does seem tight and to stick up. I can feel the tightness when I rub cream on her feet… the soft and natural right foot comparedto the tense and tight left foot. When I tell her to relax her foot, it softens but it reverts back to tight within seconds. She does suffer from a little left-sided neglect and I am always telling and encouraging her to use her left arm. I also believe she is ‘capable’ of using it more than what she actually displays. I have read your website in full but I am confused. I am tired. My business is struggling as I have to cope with looking after my wife, my son and to do all the household chores and to try and keep an income coming in.
Are you going to be in Scandinavia again? We are living in Bjorli (Norway). I can’t afford to come to India but is there anything which you might be able to do… like provide some simple instructions by way of video? I just have this real feeling that you really are onto something and that your strong belief and confidence in your work really does shine through. I just wish you were closer!
Please please help in any way you can. Any simple tips or advice?
I sincerely thank you for your time and for your wonderful website and your life’s work in after-stroke care. You are a truly special person in trying to help so many people.
Med vennlighilsen,
M.C.
Norway