Words of hope please

[Wallsy1980]

Hi all,

My father had a stroke last Thursday in the right side of his brain. I was actually with him when it happened and he was at the hospital with in the hour. For what ever reason he did not get a scan until the next morning and did not start the Aspirin treatment until around 16 hours after the stroke. He can speak quite well and see and read. Still not passed his swallow test though. When I left him at the hospital the night of the stroke he could still move his left arm and leg quite well but now nothing. He is only 56 does not smoke or drink and quite fit and very active. He was very sleepy for the first 3 days but yesterday was more alert and was in very high spirits talking about the things and places he wants to go and see. It breaks my heart to think that this might not come true. I am remaining optimistic and know its very early days in his recovery. Do things improve as swelling goes down? Has any one got a similar story where motion has returned well on the left side. Can any one recommend questions i should be asking, medication for brain cell recovery? I read that victims that listen to music in the early stages of recovery see good results in brain cell recovery so we had a good sing song yesterday along to his favorite music.

Thank you in advance and my thoughts are with anyone that is going through a hard and distressing time.

[oc1dean]

Here are some qestions for your doctor, keep asking even though s/he will say they don't know. If you don't let them know how little they actually know they will never change.
How many patients has he/she seen fully recovered and what did they do to recover? This is not the ADL recovery.
What has been done and still needs to be done to prevent another stroke?
What area of the brain was disabled by the stroke? What functions did they cover?
What type, clot or bleed? Show me a 3d map.
How big was the penumbra? What areas did it affect?
What clinical trials are going on right now that the patient would be a good candidate for?
What treatment options have been discovered in the last 5-10 years for stroke rehabilitation?  Of these options which ones are available in your clinic?  This is to determine if he/she is up-to-date or if you will have to do all this research yourself.
Who are the best therapists working in your clinic for stroke rehabilitation and why do you consider them to be the best?
Who do I work with if depression takes hold?
What books on stroke recovery do you recommend? Stronger After Stroke should be mentioned. If not they have no reason to be considered a stroke doctor.
What stroke related magazines do you recommend?
What internet sites do you recommend about stroke? There are at least 15 stroke forums out there.
Dean

[Wallsy1980]

Hi Dean,

Thank you so much for taking the time to reply. Sounds like you have some good experience and I have printed these questions out ready to ask tomorrow.

Today is day 4 for dad after the stroke, it has been a bank holiday in the UK so therapy has not been going on over the weekend so dad has had his first real sessions today. He has now passed his swallow test which is great as I know he was getting hungry. I'm taking this as a good sign. I am seeing small improvements each day and hope and pray the medical staff can get my father walking again.

Kind regards,

Tim

[oc1dean]

Here is some documentation on music therapy, see if your doctors even know about it.
4. Music therapy, music has been proven to help initial recovery, So while you are in the hospital you will have a selection of music to listen to.
http://www.msnbc.msn.com/id/35502970/ns/technology_and_science-science/
http://www.epsychology.us/rhythm-of-life-music-shows-potential-in-stroke-rehabilitation/
Look up my posting on What my doctor should have told me, it will give you more ideas on what can be done.
Dean

[Wallsy1980]

Thank you so much. Ill give these a good read.

When did you suffer your stroke and how has your revovery been?

Tim

[oc1dean]

Its been four years, left hand fingers are non-functional, arm will mostly work if I place it into position. Leg no AFO and no cane. Cognitively I was not affected. Worst is my pre-motor cortex was destroyed so planning of complicated movements is gone, which is why my walking may never become smooth again.
I am on the do-it-yourself rehab because of cost/plateau, plateau is only used to justify stopping therapy, it is not a medical diagnosis. Read Stronger after Stroke by Peter Levine, the best rehab book out there.
Dean

[Wallsy1980]

I have already ordered 2 copies yesterday. One for me and one for Dad after your recommendation although Amazon has quoted up to 3 weeks for delivery. We live in the UK which as the NHS so free health care for all which is lucky I guess. Although it does mean shared health care. For example I have not been able to speak to Dads Doctors my self as they are not available when I am able to get to the hospital, but Dad seems happy so far with the treatment. Therapy Started on 5 which is when the tiredness dropped. Dad is still very positive and has a good out look which I have explained to him is a must based on what I have read for a better recovery. In your recovery process did you suffer from depression? If so when did this kick in? Thank you so much Dean for sharing your experience with me.

Regards,

Tim

[oc1dean]

Depression was not really present during the 5-week hospital stay, mainly because I was not told anything about how severe my stroke was or what the likelihood of recovery was. I was thinking that I would be back to normal in 9 months. The psychiatrist I saw in the hospital tried to get me to admit that I was mad at my body for failing me, I refused  to believe it because i was still under the impression I would recover fully and soon. After release from the hospital and research started on the internet did it finally dawn on me that I was totally screwed considering the physical deficits I had that barely seemed to get better. Anyway depression did set in around 6 months, I saw a social worker a couple of times. Persistence and never giving up are key to keeping going, I figure I have 40 more years of living to do yet and if I work hard on recovery they will be much more enjoyable that moaning about my sad lot in life.
Dean

[chrylmax]

My mother had a stroke on June 15th and her right side was compromised.  In the first few days she could lift her leg and a few days later she could not, nor could she move her arm/hand.   By the end of July, she was moving her leg, but her foot still drags, so she'll have to wear a brace to walk.  No movement in her arm yet, as they say that takes longer.  Short term memory is not all that great.  She can swallow although her speech is a little off.  She'll never be 100%, but she's got a really good attitude - meaning she wants to walk out of there and back into her home and not a nursing home.  At first, I could see her falling into depression and rejecting therapy, which lead me to have a real heart to heart with her and let her know that if she doesn't get better, she will be in a nursing home.  It was a bit harsh, but it's just what she needed - a dose of reality - she's been working so hard every day now.  I've just been told she only can stay in rehab another 4-5 weeks and if she plateau's before, it'll be less.  Sometimes, you need to hold back the truth so they continue to fight hard.  Good Luck.......it's a long haul.