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New Member - Robyn - saying hello


Robyn in Texas
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Hello – I found this site while searching for info on long-term prognosis after SAH.  I had two strokes – one ischemic and one SAH on Labor Day of this year.  My bleed happened after TPA and manual thrombectomy in attempt to remove the original clot. 

 

I am recovering as well as could be expected I suppose.  I was very lucky to have been discharged from ICU directly to a high quality inpatient rehab hospital to their TBI unit, where I started rehabbing right away.  They had me on a bike in PT one day out of ICU, even though my left side was paralyzed.  We have video of that – pretty comical! 

 

Also my insurance paid for a month-long stay in assisted living specifically for neuro rehab patients, where I was able to practice independent living skills in a safe environment – like cooking my own meals, doing laundry, grocery shopping. etc.  I came home from there just before Thanksgiving.  I live alone and am making it one day at a time, with some daily help from a home health aide.  I am in a day neuro rehab program now – 7 hours of therapy – PT, OT, ST plus counselling a day (exhausting!)

 

I walk, cook, dress, bathe, etc.,  without help, but still struggle (I’m just four months into this) with terrible fatigue, and no use of my left arm or hand (working on that daily), poor sleep, cognitive impairment, PTSD nightmares, and overall working through the grief of loss of my former high-functioning self.  I had plans to return to work in early December, but realized I wasn’t ready – cognitively or physically/stamina-wise.  

 

I’m now talking to my boss about a part-time return to a less stressful role in late March.  My former job included 150 nights/year of travel and leading a team of 200 employees.  Not going back to that life -depleting stress hole ever again!

 

Hope to learn from other members of this group how to best manage my recovery as I work to get back my old brain.  Thanks for allowing me to join. 

 

 

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Hi Robyn and welcome to BTG.

Sounds like you've been through quite an ordeal, but you appear to achieved quite a lot by way of rehab since it all happened - well done.

 

Fatigue is so common following a sah and unfortunately can go on for months or even longer. 

I hope you are managing to get plenty of rest as part of your therapy routine - in my opinion it's as important as it gives the brain time to rest and repair. There is a good read on here somewhere - it's called a letter from my brain (I can't remember where to find it but someone will no doubt advise) and it's written from a brain's perspective and how/what it would like us to do to help it get better!

 

It's good that you are discussing a less stressful role in the future,

 

Wishing you all the best in your recovery,

Sarah

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It's called "A Letter From Your Brain."

 

Here is the link:    http://web.behindthegray.net/index.php?/articles.html/inspiration/a-letter-from-your-brain-by-stephanie-st-claire-©1996-r167/

 

If it doesn't work for you, go to the yellow band at the top of this page, hover your mouse over 'Support Information' and 'Inspiration' should appear.  The article is in there.

 

 

 

 

 

 

 

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Hey Robyn, sorry to hear of what you've been through. The after care you managed to get sounds a good basis to help you start to rebuild a new life framework but I think you're being very sensible about how you go back to work and indeed what that might be. There's a huge long thread in here about that which you might want to read in chunks.

 

Ask anything you want, someone will always have a view and an experience to share.

Daff x 

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Welcome to BTG Robyn,

 

As I always say "My Surgeon told me Stress is bad for us"  so less stress will be good for you xx

 

You must not listen to others problems while getting over this and calm is order of the day.

 

Keep in a happy frame of mind and rest when needed xx

 

Take care of yourself, drink water and here is a smile to keep you going on down days,  as I read when you smile you cannot feel miserable or down as a smile overtakes all troubles.  I have tried this and it works with me.  A real smile about good times when you laughed so much you cried.  Hands a pretend smile to Robyn xx

 

Wishing you all the best

Win Shewhowearssillygrin xxxx  Ha xx

 

 

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Hello Robyn, also a very warm welcome to BTG, I do hope you are finding  information available in the many personal threads, that relate in some way to your own situation.

 

While not able to give any medical advice, you will find much support and encouragement as you get familiar with the site and it`s many members willing to share their experiences with you.

 

It was so good that you received prompt attention. Immediate intervention

can have untold benefits in preventing increased trauma to your brain.

 

Also it`s great to learn that you had that months rehab covered by your insurance. You certainly have had the ideal support so far.

 

As you say, now that you are home and living with recovery, four months on you are able to take stock. I must say I smiled at how you described your former workload :)

On 12/26/2016 at 15:48, Robyn in Texas said:

My former job included 150 nights/year of travel and leading a team of 200 employees.  Not going back to that life -depleting stress hole ever again!

 

Well done for realising early that you need time to recover. Your brain`s trauma will take time to heal and adjust. Your body also needs time and the fatigue you are now feeling is one of the main after effects that you will have to accept and manage in your journey.

 

It is good that you are talking with your boss about a phased recovery with different responsibilities... recognising this early is so important to your recovery. So often your approach can be.. get back into work asap... which leads to so many other issues.

 

Incidently I am an avid follower of the BBC presenter Andrew Marr and his political show .. Marr on Sunday. Like yourself, he was a workaholic and is now dealing with his own stroke recovery. You might find this link an interesting read. He made a small documentary . My Brain and Me.. but I don`t seem to be able to recover this in my searches.

 

He is now back at his very demanding prime TV spot on a Sunday morning... still with very little use of his left arm.  (he does his clapping by slapping his knee with his right hand !)

http://www.dailymail.co.uk/news/article-2351173/Andrew-Marr-tells-time-died--twice.html

 

Your daily rehab programme does seem daunting. How long does that continue?

 

Please keep in touch about your progress...both highs and lows.

 

Best wishes as you go into 2017.

 

 

 

Subs

 

 

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