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[6/14, 5:36 PM] Hardeep Sodhi: Hi All
Just wanted to get some experiences here….did you interact with doctors who said you/ your stroke affected patient could ‘never’ walk, speak etc. ?
Looking back now, how right or wrong you think they were ?
[6/14, 8:26 PM] Hardeep Sodhi: We did discuss this a bit in today’s meet. Generally the impression is doctors are usually very positive, though no specific time lines are given.Would very much like to hear from others as well, including situation at time of discharge from hospital( and month/ year of discharge ) to status now. Am sure it will help many in their own journeys.
[6/14, 9:37 PM] Sreekanth Kesava: My doc told me it usually takes 1.5 years for recovering. Its 2.5 years and far from it.
But frankly, what should he have said? Take a pessimistic view and tell me a decade or what he said. The pessimistic view would have killed my spirit immediately. To take a more realistic view… Well, what is the realistic view? We all know that brain repair has too many factors to consider. Miracles happen and disappointing progress for 2 seemingly similar strokes.
I personally feel, its better to take the optimistic view and hope for the best…
[6/14, 9:55 PM] Arvind Chittor: After going through the trouble understanding my recovery. I came up with a conclusion not to listen to anyone’s time line blindly. It so happened long time ago ,a therapist told me and my parents confidence that it will take minimum 3 years for me to recover and even if I recover ill be dependent on a cane. With God’s grace and decision I’m currently walking without any external support. I gave my level best to come out of this without loosing hope and also to prove everyone wrong who gave a false comment on my recovery. I’m currently working towards my final lap of finger recovery and I’m planning to fly back to Qatar to give a live proof of their judgment gone wrong .so I request members here never believe anyone who says recovery is not possible or will take long time. Recovery is only in our hands. More we involve ourselves, more the neurons fire. So keep being active and give ur best as usual ?
Good luck and prayers ? for the best recovery. Good night all ?
[6/14, 10:24 PM] Hardeep Sodhi: Indeed always better to be optimistic…thanks for your experience sharing.
[6/14, 10:25 PM] Hardeep Sodhi: Great ???
[6/14, 10:27 PM] Ambika B: Well said. Wish you the best. Everyone’s journey might be similar but it’s the unique circumstances that are different and can’t be compared. Staying positive and having a hopeful mentality does keep people going. Keep it up and safe travels to Qatar when you do go.
[6/14, 11:43 PM] Sunish Thoniyan Nanu: ????????
[6/14, 11:52 PM] Sunish Thoniyan Nanu: Doctors are very good to say from what they see us after their treatment . They can’t give any time line on our recovery at all for that matter even the therapist let it be PT or OT or anyone even in Ayurvedha.
We have to be cool and work towards the goal that we set for ourselves . Just don’t see when it will happen . Just keep doing everyday every moment something. As time passes u will see miracles coming in front of u . For some it may be in few months , some years . Let’s not see others what came for him /her . See what he / she did to get that . Some may work for us some may not . It’s like the beach . Water coming towards and retrieving backwards.
But never the wave stops . As long as the wind is there it generates the waves . Try to be the wind . U will get everything. ??? -
Some responses from FB…
My doctor said walking will take something like 6 months but started walking in 15 days after discharge but hand is putting me down 6months and spasticity is still beating the best of me , raising hand while sitting is still not possible and fingers extension still feels a distant dreamNo they were not positive so we were happy laterI was told by one doctor as was examining my eye. “You are not likely to regain your speech”. I was devastated. I have Asphasia but I can talk very well and be understood. If he had told me I would be speech perfect, I would not have minded. Thank goodness for NHS and Stoke Assn for the speech therapistsMy husband was told he could expect about 80% return to normal (12 years ago), & that’s pretty accurate. The main remaining problem causing the deficit is right sided numbness & right sided nerve pain.I was told I’d never walk again (I was 22 and 5 weeks pregnant), 8 months later I took great pleasure in walking into my neuros office carrying my daughter, and said to him don’t ever tell someone they’ll never do something again, because that could be the difference between someone trying and someone giving up
It was generally assume I would not get any use back in my right side, or much of my language. But that said they were very excited about how I worked at improvements. They were so excited when I managed to use the left hand operated wheel chair, the first person to do so.As I have said previously after four months no improvements, nothing in my right side… then an email from my martial arts instructor, I had done quality martial arts for 20 years or so previously, a breathing and another, essentially a Buddhist mind exercise..three days later in the middle of the night my left hand picked up my right hand, and my right first finger went up and down about five times (I was a day or two from being moved to a nursing home) anyway nurse was so excited, next morning so was my Physio, OT and super in charge doctor, a moth later I walked out of hospital with only dad’s stroke walking stick for assistance. In the time since then have had, apart from running, virtually a complete recovery, full time work for seven years, a Bachelor of Visual Arts with hons, yes I am the lucky bloke, my advice.. try and get in at least 20 years of proper quality martial arts training before your stroke.Yes I completely understand I can be considered very annoying, but good stories should be told. -
From the TG group..
Jennifer Menezes:
Yes my doctor said I might recover maximum 20 percent and may not be able to walk without support or get back to work..but I have my hand back almost to it’s full capacity, working full time and walking without support however with a footdrop..my therapist said footdrop may not be completely healed..I’m hopeful and working towards getting my ankle back too….
AKSHAY Patil:
Great recovery Jennifer , what did you do for hand recovery
Jennifer Menezes:
I used to do passive movements from day 1…may be 300 or more times a day for my for fingers and wrist..rest of the hand my physio had to help..but the moment I had some of the movements back I started using it for every little thing and I think that’s very important and helped me the most…we should not let our brain get used to non usage of affected hand or leg
I will not say this might work for everyone as my damage to the brain might be different than yours but this is what helped me
AKSHAY Patil:
Hand spasticity is tough
Jennifer Menezes:
I’m sure it is..I have it in my calf and ankle..but I try and walk and move it as much as possible to keep it under control..I think it is getting better..?
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Some more from FB
Charles Edward Creswell
I would say they were pretty close. I had a severe stroke at age 16, on Jan 10th 1981. The staff told me I might be limited in use of hand and arm. I limped and turned ankle with every step for about 30 years. Had tendon ankle surgery and walk better today. Thinking they could try cutting some tendons in hand to make function better. It has now been 40 years post stroke .. I have slowly improved cognitively and memory by getting educated, slowly progressed on the hand and finger but notice thumb holds me back àlot because folds inward.==Matt HansenThey said I would never do anything for myself again.Hardeep SodhiMatt Hansen and where are you now ? When was the stroke and your status then ? -
Siva:
Ultimately, it is the individual’s choice of which limb to work on first as per their individual needs. If they want to their freedom to move about they will work on legs first. But if the want to use keyboards or do more with their hands like mechanics or cooks do then it would be their hands they will work in first. I know another survivor in Malaysia from another group wherein he was very clear that he wanted to play the piano more than anything else so he worked on his hands and is still wheelchair bound. So, to my mind, it is an individual choice.
In my case, I was told that it would take 8-10 months before I could walk again. I took that as a challenge and walked unassisted into the neuro’s office a month and half later for a review post discharge. While being flabbergasted, he too quickly turned the topic to my hand not functioning properly. I told him that I will do it in good time. I can move freely and this a big thing for me.
It has taken me a little over 2.5 years post discharge to be able to get sensation in my left hand and move it at my elbow and shoulder to some extent. I used this time for mental development too. I am certain once I get my left wrist and fingers going, I can rebuild the entire arm with the appropriate exercises.
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Some more responses from FB
https://www.facebook.com/groups/1637831529845863/permalink/2696183754010630/
Susan Pare ( Author ) :
Not an easy week, I was told by a medical rehab Professional, the dreaded 18 month window, I am 21 months out,likely no further recovery for my hand. I had to look deep inside and think through what that meant to me. I have been fortunate enough to have found a highly skilled neuro PT in my area to work with. I chatted with a couple of my stroke buddies here. Reviewed Dr. Tobias YouTube video on the 18 month piece and concluded. If my neuro PT will continue with me. I will not quit.Replies :
Jutta StinglYou can do it!Barry North
Don’t ever quit. I know personally it takes motivation to commit to daily exercises. Keep going!Patti ThramsGood for you , stay strong always hope!
Martin DillonBullshit I’m 2 years out and now able to slowly open my fingers with repetition it will get easierJana McDonaldThere was a case of a man who 30 YEARS out started swimming for weight loss, noticed movememt in his hand, went back to therapy and regained use of his hand. It is possible, it’s just an uphill battle with slow progress. Don’t give up, activate your neuroplasticity, and put in the hard work.Sandy FlandersIt is a business. If they thought your insurance would pay they would tell you to never give up. keep working on your ownNikki KaurSandy Flanders don’t let them or the stroke win. Show them how strong you are. Show stroke who is boss.Tony PerezI don’t understand why therapists and doctors can say something like that. I remember i asked my therapist if I would ever walk, he didn’t tell me that I wouldn’t, he told me that it was possible. 3.9 years out i can walk unassisted and my arm, hand and fingers work, not 100% but they work. Never give up!!Sandy FlandersTony Perez that is so strange since the statistics tell us that the majority will walk again. I am really into evidence based medicine, I don’t want their opinionsTony PerezSusan Paré, there is ALWAYS hope. I’m still making improvements. Never give up.Terri QuindlenCr9ck of crap. Medical professionals are misinformed when it comes to stroke recovery. You will continue to improve as long as you are alive. Don’t give up and don’t stop trying just because a misinformed medical professional tells you you are done. Usually this means your insurance no longer wants to cover therapy. Go online and find therapy groups and continue to work on your recovery.Samson PhamMy family was told by a medical professional that I was a goner since I was in a coma for like five months. All I’m saying is that professionals can be wrongan MccanThat’s right man has no idea of your recovery keep pushing no matter whatMaggie MayzesThere’s always hope! Every recovery is unique and determination makes a difference!Patti WhighamKeep moving forward for sure.Sharon RogalewskiBull shit. Keep trying. Never give up. As long as you work you will progressCarol DisleyNo time limit on recovery our brain is always learning so do not loose heart keep working on it
Nikki OurasanitYes do not quit we are on the same boat hereDean ArmstrongThat’s rubbish I’m 4 Years in and still making gains you tube doctor Tara tobias look her upVaughn JohnstonThere is no time limit on recovery. Get a new PhysioSusan ParéAuthorVaughn Johnston my neuro PT isvspwcificalybknowledgeablevandvtrained for arm and hand restoration. I wil keep herVaughn JohnstonSusan Paré okay, then advocate for yourself. Point her to updated researchKristen ToepferDr’s didn’t think I would make survival till morning,,priest family etc I been proof wrong since.Get a team (dr, therapy, care) don’t accept anything but the best. It’s your life
Myra MarburyDon’t give up !! God is not finish with you yet
Tekla Krause PierceyBefore my stroke in October I had major surgery in my arm (not related to the stroke). That surgeon told me that he could just fix aspects of my arm but that I would never get my wrist mobility back. I looked at him and said “that’s what physio is for”. And I was right. I am still getting more and more mobility back and my brain is healing more everyday from my stroke. Don’t let anyone say you can’t. Just keep trying.Crystal MatthiasDon’t listen to anyone that tells you your recovery is done it’s only done when you say soRebecca BeardI’m 3 years post still improving. Don’t give up.Kent StirlingProve them wrongEllie Sullivan-SellarsRecovery is lifelongMisty WilliamsTime to get another one!John CarrilloI ever give up going on 4 yearsEdmund TanI’m almost 3 years out and I’m still seeing improvements.The fact of the matter is that our brains are always rewiring for life.Mark MosherNever ever give up on your recovery ❤️?
Marcella CelesteKeep going, I’m two years post and don’t have use of my hand but I try daily and a few weeks ago my fingers started to move, it’s only a slight movement but that’s how my thumb started and now I can move it at will so I’m praying and hoping my fingers …See moreJustin TanpuaBeen told by my nuero last December. But I can feel that I’m still recovering.Micaela LegleuIf i may ask, What Dr. Tobias videos are you referring to?Stay positive! My leg still doesn’t have full function after two years but I’m not giving up either
Elliot TarabourDon’t let arbitrary time frames dictate what you can do.Lesley CurrieNever quit there yet there is a life after stroke, slightly altered from the plan and not what we would have chosenDebra FosterKeep trying it’s YOUR body , your will!Wanda-Lynn PledgerI was told more or less the same thing but I wish you could just say it instead of beating around the boyspeaking around the voice left me so upset I figured you jerk you just don’t want to do your job sit around so they really know done that a whole l…Kenneth Bonnellstatistics and forecasts don’t always ring true…your brain and body are capable of more than you realize..given time and effort, many stroke residuals can be resolved…..maybe not all, but most…Jeannie Steiner HannemannI am almost 7 years out and just had major improvement!! Ignore them….ignore the window…the door is open…Stroke Support IndiaNever too late. The brain develops every moment.Keep working at it.Jeff CiborowskiI had 4 bilateral strokes in late 2013. Lost my right side toes to nose. Started getting my fingers back less than a year ago. Last year was a great year for recovery. Not where I want to be but making progress.Raymond AlexanderNot true however keep your expectation real 6 years later I am still experiencing small gains and yes stroke arm is weak but year by year there a small improvement so all is not lost. Persevere #respectJessica Dengel Spicolahaving the mindset that you will not quit is so important. I wish you the bestGraham BrittonI am persevering. Still cannot feel my left leg after four years. When I ask how much longer to medical people they answer”don’t know “! And one told me “you will never get the nerve responses back”!!
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