OT and Recovery Post NASAH

[Greg 21.01.15]

Dear All

 

I just wanted to do a quick straw poll to see if folks have had or were at least offered OT post SAH? I'm having problems with mental stamina and this is key for my returning to work. I'm four months post my SAH and I am seeing some improvements, but think I would benefit from some professional guidance to help me through this.

 

I can concentrate for about 15-20 minutes depending on the day on more complex things, and then all of sudden its gibberish and I have to stop. I'm told by the hospital that the 3 to 6 month time frame post SAH is when I should make most improvement, but none the less four months down the line, this does at times worry me a bit and want to feel I'm doing al I can to aid my recovery.

 

Both the hospital that treated me and Headway have not come through with anything despite promising they would. I just wondered whether anyone has any experience or advice they could share on OT and accessing services either within the NHS, 3rd sector or privately.

 

Many thanks in advance

 

Greg. 

[Winb143]

Hi Greg,

 

You will see that a lot of people are not able to go back after a few months, not saying all cannot but looking at the posts well people seem to  fizzle out if they go back too quick.

 

I have retired but you will see/hear from people who go back too quick,  take your time Greg.

 

Stage the return back to work seems the way to go ie 3 hours the first week (with plenty of breaks)  3 hours x 3 days a week. 

Then progress from there.

 

I wish you all the best on recovery. 

 

Sharalu has just started back.  She might be able to help also Clare xx

 

Regards

 

Winb143  x

[Daffodil]

Greg, I have done the works! I had help from Headway support worker who helped me on that stamina you describe plus a work Occ Therapist who I still speak to even three years out...mind you I was off work a LONG time...even now I don't work full time but it's taken a long while to build that ability back up.

Here's a few top tips that helped me increase my mental stamina. ...I couldn't look at screens, listen on the phone, be anywhere noisy, watch TV, read for any length of time....my list of deficits was challenging my desire to get back to work but this approach helped me.

I adopted Small short bursts of mental activity , soduko, crosswords, online brain games, followed by breaks of absolute nothing, no noise, no distraction, just water and rest. So concentrate hard for 15 minutes then rest for 10 then do another 10 then rest then 5 then rest. Do this for as long as you need to get comfortable, if you feel worse extend the rest times and don't push it. Do this one day and not the next but then gradually increment the times up for concentrating and extend the time between beaks but don't be tempted to rule them out, your brain needs them. You should see improvement.

I also listened to audio books to practise taking notes and listening, this was incredibly hard but helped me to re build that ability to listen and pay attention again.

OTs can help and provide some practical examples. I also shared in a previous post some suggestions from my neurophyscologist about things to help keep memories. Main thing Greg is its all about pacing these days. Choices you make and the knowledge that everything you do uses energy a whole lot quicker in that healing brain of yours. So eat well, drink water lots, rest and sleep and go easy my friend. Be kind to that wonderful bundle of neurons.

[Greg 21.01.15]

Daffodil

 

Thank you so much for your suggestions, I will give some of things you suggest a try. I had been doing some similar things, but not quite structuring as you describe with the 15, 10, 5 intervals. 

 

The taking notes on the audio books  gives me an idea. My work occupational health lady recommended Ted.com talk as something slightly more technical to concentrate on bit not too long (typically 15 minutes). The bit I could add to it is the note taking or writing a brief summary afterwards. 

 

I'm starting to learn to pace myself, if I'm honest it doesn't come naturally but I'm making some progress.

 

Winb thanks of the advice. I know when it comes to returning to work, I know I am going to be on a long phased return, and my occupational health lady has already contacted my consultant, and will be talking with my GP to help plan things out. I'm lucky I work for a health care company, and they are very good at looking after us when things are great, so for now I'm not sweating that side of things. Going back to work isn't going to happen yet, but at least it will and for that I'm very grateful.

 

Thanks for the advice, much appreciated

 

greg.

[Sharlua]

I have just gone on a phased return this week after SAH on 12th Jan this year, I have been doing two hours per day (although with travel probably more). So far been ok but think this is honeymoon week as just really been catching up on last six months with colleagues, I have been shattered when I get home. I did ask GP prior to re turn about any support around concentration and getting words stuck in head which don't seem to make it out, which can be embarrassing but she said things would improve with time.

 

Getting back to using works IT system has been a bit of a laugh could not remember password or my security questions to get it reset! I think Daffodil's post says it all really and I hope you are successful in getting OT support perhaps your employer maybe able to get you some support through occupational health if they use such schemes. Wishing you a good recovery and do pace yourself as better to be a couple of more months off than to have a relapse once back and lose confidence

 

Regards
Sharon

[Winb143]

Good luck when you return to work Greg,

 

You'll be okay I know you will. Mr Sensible I'll call you as an alias x

 

If you are ever worried or down,  come on here and have a rant.  It helps as we all know what each others going through. 

 

Wishing you and Family All the Best

 

Regards

 

WinB143 xx

[Greg 21.01.15]

Thanks Win, I will I'm sure take you up on that, there's still a lot of this journey to go. As for Mr Sensible, something I will aspire to but not always promise to achieve! 

 

Sharlua, good luck with the return to work. You are doing great, your SAH was only two weeks prior to mine, so I'm impressed! Getting words stuck, is something I think a lot of us get caught out by, I know I do. At home its easy to make a joke about it, can appreciate at work, perhaps not so easy. Someone gave me what sounds like good advice with the phased return which was not to have a fixed schedule of increasing your hours, only increase them once you are good with what you are doing. Haven't got there, but some discussion with my occupation health lady has suggested that this is what we will do when I do come back. 

 

As always, thank you all.

 

G

[Sharlua]

MRI scan today, now just to wait for results to ensure that coiling has been successful, once I know this I think I can concentrate on return to work. I think it is always sitting there in my mind that the coiling has not worked and may need further treatment, fingers crossed it's been a success. Greg that advice seems sensible as not sure increasing hours the way I am doing is the best way, have review next week with manager and might look at this.

Sharon

[ClareM]

Sharon

Gregs advice on the increase is spot on. I have not actually got a formal phase plan. I work as many hours as I did the previous session and then add on an hour if I feel ok. My boss is fine with that and checks if I wanted to stick or increase on my next day. So far it's working ok but next week I am hoping to do 3 x five hour days(with short break). May struggle so keeping an open mind - my mind is open most of the time nowadays lol - and reduce to 4 hours if necessary.

When do you get the results of your MRI and how does your phasing increase?

Clare x

[Louise]

This 3-6month time frame isn't for everyone if I'd gone by that I cant imagine what I would have been like things keep improving slowly and gradually you begin to notice it..

 

Only advice I can offer is keep prestering Headway for apt maybe try by going to your GP see if that gets ball rolling quicker.

 

I went into rehab hospital after my SAH in some respects was lucky it was all put in place for me - in other recpects wasn't so lucky..

 

good luck with it, take care

[Winb143]

When I woke up I couldn't remember my address and thought my Dad was still alive but after my hubby pinning address on wall it hit home how bad/ill I had been.

 

We will all get over this, it's time and confidence,  which I have an abundance of (time). 

 

Confidence, well I was sure I was strong in mind and body (Big now lol) as my Mum always drummed it into us like this.

 

"You hold your head up high Win, shoulders back as you are as good as anyone if not better".  My Mum made me march along not actually but with her words and I thought I was the greatest as I had my Mums Love xx

 

See we are lucky not in every way but I count myself as lucky to have a life of laughter and music even when small we did concerts, I always mucked it up.

 

So work will be a doddle for you All, she says hiding from work xx Good Luck All you Grafters xx Smile xx

[Carina]

This all sounds so familiar - Greg you describe so very well what I feel as well - but being a language teacher (no, not English) students expect the right, correct words. That's what we expect from them, what to do if you cannot find them yourself... Bit of a problem, isn't it? 50 Uninterested students (18+) who talk all the time, a constant noise in lesson blocks of an hour and a half.

Return to work every day during a few hours a day would be a dream but rather unrealistic given the organisation of the classes. But hey, I will get there when I get there, I guess. And our direction is not as understanding... they might well give me all new courses, so that I would need to study hard before starting at all - which is not possible at present - concentration, memory, noise, light, you know!

I had my MRI last Thursday - 6 months - and there still is some blood, their seems to be some tissue damage as well. The doctor gave me the advice to get in touch with a Center for neurological deficits you're not born with (don't know very well how to describe it). Better do it, the brain exercercises I try to do every day wouldn't be scientific enough.

Thanks all

C

[Greg 21.01.15]

Sharon, fingers crossed for the good MRI results. I had a CT scan a couple of weeks ago when I went for my check up and when I got the results they told me the ventricles in my brain were back to normal size. My first thought was no one had told me they weren't the right size in the first place It does help me to understand some of the physical impact on the grey stuff of all that happened and why things are now as they are. 

 

Carina, good luck with return to work when you get there, try to hold out to you are really ready. From everything that everyone here on BTG has said best to go back when you are really ready, and not have a false start. That said it's not always that straight forward. When I was in hospital there was a young guy in the bed next to me for a few days. He'd had a small stroke, and was recovering OK, but needed to get back to work as he had no sick pay, and was soon to run out of annual leave to cover his absence from work.What he really needed was quite a few weeks of recuperation. At that point I counted myself as lucky.

 

Louise, good to know that things do keep on progressing past that six month point. I realise it won't be a hard and fast cut off. I pushed the neuro specialist nurse for some time frame as I was getting a little concerned that my progress was a rather slow. I will be pestering headway this week and my GP has offered to help chase up the hospital, so between us we will get there. Anyway, gives me something to do while I'm not working!

 

Hope everyone has enjoyed the gorgeous weather this weekend.

 

G

[Sharlua]

Clare my hours increase by an hour per week but go up towards end of four week period, think I will need to use some holiday in the following month as definitely not ready to do the 9 hours over four days I did before SAH. I think will get MRI results in couple of weeks as that is when my appointment is. My second week has been much harder still finding my way back around things so much to catch up on and feels a bit overwhelming at times. It is lovely to see work colleagues but it feels like we are on different pages, my poor team leader must be fed up of me saying "remind me of how we do this"!

 

I hope Carina that your return goes well when the time is right for you and agree with Greg that it is lucky to have a job that allows this and feel for people who don't. I agree that everyone is an individual and as SAH has such differing implications for people, it is right to follow what feels correct for you in returning to work.

[kpaggett]

Greg,

About the mental stamina.  Remember that your whole body requires your brain to do ALL of its various functions.  I found that at first, I'd concentrate on something and then my legs would become weak or I'd get a worsening of my vertigo...it could be anything.  I constantly had to check in to myself and really evaluate what I needed.  At some point, you have trouble concentrating, but in spite of it, you still go on and then gradually you'll see that you can actually last longer than you think.

 

Lots of down time like Daff says is also really important.  Assess what you need hourly and then after a while, daily and then monthly...always assess.  You become your own therapist.  Take one day on and the next two off, then one on/one off, then one on for 1/2 the day two days in a row...try different ways to find what is best for you at any given point in your recovery.  

 

Just an aside, a neuropsychologist is really the person to see about cognitive issues and help with focus or attention.  OTs are better for things like working on regaining mobility in your arm in order to then put it to good use on the job.  Like Daff, I saw a neuropsychologist after a bit and it was the best decision.  He helped me the most to get my new strategy for life.  PT, OT and Speech helped at the beginning, of course, but the neuropsychologist helped to take the steps after I was essentially medially discharged.  At that stage, you really don't need any medical services, but in no way are you feeling like you're functioning remotely OK.

 

Also, the time frame about recovery...yes you recover the fastest at first, but that doesn't necessarily mean that you recover the most meaningful parts of yourself first.  I had an amazing breakthrough after 2years and I am still seeing improvements today.  I too worried at the 3month mark that someone told me about...thank goodness that my neuropsychologist told me that he wouldn't even want to evaluate things until after 18month or 2 years!  There needs to be a leveling off before you can begin to figure what your deficits may or may not be.

 

Good luck navigating this crazy up and down condition.

~Kris

[Greg 21.01.15]

Kris,

 

Thanks for your comments, some really useful things in there, especially with regards to OT versus Neuropsychologist. I am still hopeful that the hospital may be progressing something along this lines (there was no specific mention of OT) where as where I have been discussing with Headway we were talk about OT. So I will check that I am seeing the right people (if I ever get the chance to see anyone!!)

 

At the start of all this and even at the point of discharge from the hospital I naively thought 2-3 three months I'll be back out there, on my feet if not fighting fit getting back there. I now have a very different view, though that said I have definitely progressed and I know compared to some folks I have been very lucky and am doing OK. However, it is good to know that progress can occur even up to two years out. Thanks for sharing that.

 

Cheers all

 

Greg.

[Winb143]

Greg and Sharon,

 

Also remember the less stress the better it is for you.  It's your life and you need to do what you want.

 

Do not Stress over work, (more stress = not recovering sooner). Neurosurgeon told me that. !!

 

We all need to work but please be kind to yourselves and get better first xx

 

When or if you get stressed sing, I know it sounds daft but it works along with thinking of happier times.

Times when you laughed so much you cried, come on we all have had those laughs.

No Sad Songs though !

 

Good luck to All on BTG xx xx

[Gemma B-B]

Hi Greg,

 

I also had a NASAH in Jan this year and was treated at the National hospital down in London as that happened to be where I was at the time.

 

When I was discharged back into rural Suffolk I was under the care of a local OT nurse who would come round to see how I was doing. After doing a few assessments with me she discharged me as by that point I could be left be myself in the house all day and it wasn't in her remit to do anything else.

 

I went back to me GP at the start of May to discuss a return to work and was told that they couldn't sign me back in due to the amount of cognitive issues I left the hospital with (I am a secondary school teacher so would also be in charge of children too). She got in touch with the National hospital and I was referred to a neuropsychologist to sit a range of tests to see if I had improved at all. I sat them towards the end of May and it was the best move I could have made.

 

The person I saw went through the tests with me and has recommended 3 types of rehab. The first is a group that meets at the National once a week for 6 weeks. All are people who have had SAH and are hoping to return to work.

 

The next is a fatigue management rehab and the final is a vocational one. The vocational one involves a team of people who will meet with me, contact my work place to go over what has happened and the issues I am left with and also visit work if needed to see how I am doing and go over strategies to help. There is currently a 3 month waiting list for this, but I saw my specialist at the start of June and they won't sign me back into work to teach until September anyway so that should fit in OK (they specified that I could do two mornings in the last week of term before the summer holiday to go in and plan and then no more).

 

I am quiet glad that they will contact work to discuss what has happened as I know how that I look and seem much more 'normal' despite the fact I still have memory and fatigue issues and it will also mean an outside body will be checking up on my phased return. I am going seeing my work's OH next week and will then have a meeting with work to set out my phased return for September.

 

I would agree with what other people on here have said and that seeing a neuropsychologist would be best if you can. If you are based in Cambridge you could see if your GP could get in touch with the National hospital in London to see if you could be referred for their specialist rehab as they take people from all around London for it and will do it on the GP referral.

Good luck with everything!

Gemma

[Daffodil]

[quote , Gemma B"The first is a group that meets at the National once a week for 6 weeks. All are people who have had SAH and are hoping to return to work."

Gemma

I also did the six week course at the national and although I found the trip exhausting at the time I learnt lots from it and made some friends although very hot rooms!! I posted some of the findings on another thread on here. It did help me no end in my return to work and the assessment from the neurophyscologist was shared with my OT at work which in turn has helped us all be honest about what is practical and realistic in work terms. I hope the same applies for you...fatigue management sounds interesting ...may have to get myself onto that one as still struggle but if you go do share back here if you can.

To give you a view on how practically getting assessed helped me to understand my defecits Greg; I returned to work after 16 months off and doing 3-4 hours a week. I now work just over two days worth of hours in a very intense commercial organisation which is my limit for now but this year I got offered a new role based on my new hours capacity so it appears to be working for all parties and I am sure the fact we were able to accommodate my stamina in my return and build up things slowly has really helped me and helped my colleagues understand limits also.

I had a lot of step backs, I still get pretty bad days but I can flex things when that happens. Not sure that's much Reassurance because not every job can accommodate that level of flexibility but if you don't start on that footing it won't work.

The plus for me is I get to retain a purposeful career albeit not quite where I was but I am VERY happy with the arrangements and feel so lucky , plus my life goals are a bit different these days!

Having a steady pain free day is my first goal , spending time with loved ones a close second and work falls into third under 'do things I enjoy ' category and if that stopped being the case then I'd look again at it .

[Gemma B-B]

Daffodil - yes I am looking forward to starting the group. I think it will be exhausting as I can't actually get there from where I live in Suffolk at the moment as I still can't drive and there isn't any public transport so I am going to be staying with a friend the night before and then just getting a train down to it. It will be useful to do it now before I start back at work as I imagine once I start the phased return I will be too exhausted to do much else. It has taken a couple of months of pushing to get onto any of these things, but hopefully it will be worth it.

 

My neuropsychologist has also sent my reports to OH, so hopefully it will help work understand what issues I am left with. I am seeing OH on Thursday so it will be interesting to see what comes of that and what they recommend for work.

 

It will be interesting to see what the fatigue management one is like - I think that fatigue will definitely be one of the main barriers to me returning to work full-time as a teacher so it will be useful to do. I will definitely report back on what it is like and what I have got from it.

 

At the moment I am trying to take everything one day at a time and not panic too much about the future. I used to plan for everything but what I am realising now is that I can't do that as neither I nor any of my specialists have any idea what will happen. I will just have to try and return to work and see what is and what is not possible.

[Greg 21.01.15]

Hi Gemma

 

I can't imagine standing in front of 30+ children at the best of times, let alone after an SAH so good luck with that!

 

Wow you were offered three forms of rehab ( I appreciate you are having to wait on some of it). How things very from place to place, I guess this is what they call the post code lottery! It is really helpful hear what help other folks are getting. I'm seeing my GP this coming Friday and I have a few plans. I am lucky to have BUPA cover from work but it hasn't been much use so far, OT doesn't seem to be something that they do, but neuropsychologists, from a quick google search seems to be a different matter, so I will see if I can utilise this.

 

The inability not to be able to plan and do so much is something I am having to learn not to frustrate me so much. The inability of my grey matter to do what i want it to at times and not to desert me when I need it the most is a pain, but could be so much worse.

 

I think like Daffodil I should be able to flex work around the good and the bad days, work are being great by me, I do just worry that the looking healthy when I get back people will find it hard to realise all isn't as it was before this all kicks off. I have also the potential to be my own worst enemy here, and will have to be careful to pace things appropriately, we'll get there!

 

Cheers all.

[Winb143]

Get a Tee shirt printed Greg and put what you like on it like "Be careful my Brain has exploded once"

or what ever suits you xx   "You cannot see my injury but its here.

 

You will get there Greg and hope all goes well xx Good luck.

 

On bad days sing xx on good days give family a break ha ha xx

 

Keep Going

 

Win xx

[Gemma B-B]

Hi Greg,

 

Yes it is all a bit of a lottery. It is only because I was already down in London that I was treated at the National, if I had been at home I guess I'd have been treated in Cambridge as that is my nearest hospital and things would be different. I think speaking to your GP about it and seeing if you can see a neuropsychologist would be a good idea. Definitely also use the BUPA if they have things like a neuropsychologist available.

 

Funnily enough I also got some more information yesterday about some rehab - I got sent a letter off a charity based in Stowmarket, Suffolk called Icanho. They were sent my details when I came out of hospital and they have a neuropsychologist on staff. They might be worth looking up if you could get to them from where you live as they take GP referrals.

 

I sympathise with your frustration over being able to plan and get things done. I used to plan everything and get so much done but now life has taken on a much slower pace. I am definitely having to learn to be more patient and accept the 'new me'. To be honest when I came out of hospital I thought I would be back in work by now (I think I was rather naïve and hadn't quite grasped the full extent of what had happened to me). Now I am trying to be more realistic about what I can do. I am quite nervous about returning to work as I do also wonder how standing in front of 30 children will go down now post-SAH, but I will have to give it a go!   

 

Take care,

Gemma

[Greg 21.01.15]

Gemma I felt exactly the same when I got out of hospital, just no conception of the timescales involved in neuro rehab, very kindly my boss hasn't reminded me of some of my earlier comments about plans to get back to work!

 

Thanks for the Stowmarket tip, a bit of a hike from our side of Cambridge but if we need to its not beyond feasibility.