Joan

Kim - this is really an intolerable situation and you must feel so wrenched by it all. Hope that you achieve a quick, and good, resolution of this for your mum's sake and for your family and yourself. Joan

What a depressing and distressing experience. You are right to want her out of there, because someone with such negative sentiments is going to do whatever to sabotage her recovery. I hope you manage to get her into the other facility pronto. Sending you lots of support. Joanxx

Hey John -- at least you have a whole social circle (sounds like, in your car) to keep you company! Am glad you sorted out the glasses and that it has made a difference. Joan

I hope you achieve the outcome you want for your mom, and know that you have the support of everyone on this forum. Having a positive attitude and atmosphere makes the world of difference and you are doing your level best to achieve that for her. Joanxx

Vivien - your experience is so true and it is great you can articulate it because it captures what a lot of us have felt (its fair to say I didn't realise I WAS in a fog until about 6 months post-SAH). We've each come through in different ways and what has happened has taken each of us differently with different ways of coping. Hope that things continue to "clear"; its lovely that you have both family and a partner who are so supportive. Take care, Joanxx

Kim - can only second what the others have said, and share your sense of outrage at the OTs casual, and careless, and inaccurate observations. It is great that your mum has you to be there for her and to give voice on your concerns for her care. All the best, Joanxx

Have asked for the neurologist to clarify what it was he did mean, then I will try and see if I can get it done on the NHS (in our area of London, you apparently can get b*gger all done on the NHS) and if not will pay for it myself.

Vivien, I was coiled, not clipped; have next to no information on what actually is in my head due to outstanding communication skills on my side and theirs (there is something about being faced with yet another 12 year old doctor who has set eyes on you for the first time while reading through your notes [cursorily] to make you lose the will to fight on....)

Joanxx

Sarah

I'm half Sicilian. Need I say more. In your position, the potential of me turning violent would be, oh, about 99%. So feel free to vent, rant, etc or whatever makes you feel better. With you 100% of the way. Joanxx

Just an addenda to the overall message: I flew at 6 months (in May) and again in August; the May flight was a short one but the August one was a 12 hour slog. However even the long flight didn't seem to affect the way my brain operated, nor my energy levels. I do take lo-dose aspirin and have done for years. This is meant to be helpful (althought it is a blood thinner) and of course drank shedloads of water before,during and after the flight (plus the odd martini or two).

Cheers Joan

Wonderful news - have a great celebration to accompany that sense of relief. Joanxx

Thanks Keith, that is really helpful. Joan

My neurologist has told me that there is an updated MRI scan which can be used in stead of an angio, which he said does carry a slight risk of stroke. Am seriously considering this as an alternative although we would have to pay for it, because having dodged several medical "bullets" in the past two years I am feeling completely risk-averse. I don't want any risk of stroke, frankly. Does anyone know about this alternative procedure, and is it as accurate as an angio? I'd be really grateful for any info/guidance...

Joan

Amen to what Karen says; you have to acknowledge the strength of your emotions, and what they are, reflect your own concerns. If someone loves you, they do understand that and will work through it with you. We all send our best wishes and support, in reality and virtually. Joanxx

I am sorry I missed the thread last night. After the sad news about my friend, found the Anita Roddick story just too much for the day and had to go to bed. It made me feel so sorry for her, for her family, and in a sense, just waved that veil of mortality that we all nearly stepped through...

Ian -- It is hard to understand how supposed professionals can act or even think like this. It is equally hard if you are the concerned party, and just want some answers. There have been so many cases, as I am sure you are aware, where people with similar levels of impairment have responded positively to OT and other therapy.

If there was anything we could do to help you, we all would, because too many of us know what it is like to be at the receiving end of unhelpful specialists. In several major European countries, like Germany, France or the Netherlands to name but 3, she would be treated properly and speedily. The NHS is great at saving lives, but less good and preserving the quality of life for the people they treat.

Joan

I can see a whole new chain of addiction arising...

I've been using the Kawashima software and also do crosswords (on recommendation of the neurologist). It has helped in some areas although my memory is still far from what it was...

Aine - Just before my US trip did the neuropsychologist and like you was a bit wound up about it although curious as to the outcome. The expereince was v. similar to your own and like you, I eventually found what he had to say enormously reassuring. My memory is still pants, but apparently the ability to learn is intact which is important. Thank for for my Mac's electronic post-it notes, otherwise life would be more chaotic than it is...

Jxx

Wonderful achievement; are you going to try for a half-marathon? Or just generally trainig for fitness? Joanxx

Welcome, Harvey -- and ditto to what others have said. There are pain solutions around, and we've all had experience with different medication regimes before hitting on ones that work. Enjoy having a mosey around the site, and you'll find lots of good company and a big warm welcome here. Joan

Keith -- I was insomnia'ed and reading through the site and came upon your post. Its really wierd because your experiences are an echo of what I've found in the last month or so. After a strong initial recovery, there has been a progressive buildup of fatigue at times and usually following a period of overdoing it (more physical than mental).

It is some comfort (although fundamentally disconcerting as such for any of us) to know these experiences are "normal" for us and so am really grateful to you for flagging it -- and with the other naggers on this forum, glad you did take that time out and did get a chance to discuss things openly with your boss.

Joanxx

Haven't "braved" a body massage as yet, but find I still am nervous about head massages (they usually do one at my hairdressers) and have so far declined all offers. Been having Bowen massage for my foot problems, but that is a very different type of massage technique. Joanxx

Wierdly, I had my attach of (severe) double vision about 18 months before the SAH; it was investigated as a possible brain tumour but allthe tests turned out negative (now, I wonder....). As a result it was treated as a "cluster migraine" and 'cured" with this new wonder drug, Maxalt. It took about 4 weeks for all symptoms to pass. I never had any recurrence. Joanxx

Like my twinni, it comes upon me completely out of the blue, but once it hits is irresistable and I simply have to sleep. Sometimes for as little as 15 minutes, other times for as long as two hours. Not enough sleep has exposed me, lately, to some severe achy pains in the neck/back of head -- never a comfortable feeling post-SAH. Joan

Jayne - mine struck when I was at the gym; in the end, after months of avoiding going near the building, I told them what happened and they cancelled my membership. But because I had double knee replacements (about 8 months prior to my SAH) working out with a bike etc was vital for longer-term mobility. However it was only in the last month or so that I have been able to get back on an exercise bike -- as Karen suggested, created a new "space" in the house with lots of distractions so it felt relaxing rather than threatening. Its worked so far and am gradually building up to my pre-SAH program. Best of luck in sorting out your bedroom, thoroughly agree with everyone on how important it is to get this most personal of spaces right. Joanxx