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[12/2, 2:08 PM] Aparna Bhattacharjee: One thing I’d like to share is safety of survivors & parents to avoid falls & create stroke like situations…..fixing of grip handles on the path to the bathroom… specially parents who visit bathrooms on their own…these grip handles are so cheap & easy to fix but they give immense confidence to survivors & senior citizens… Precaution is always better than cure…
MTR Heavy Duty Stainless Steel Grab Bar Steel Handle – Size (12″ (Inch)) https://www.amazon.in/dp/B07NC5NZ6M/ref=cm_sw_r_apan_glt_fabc_DJ83A4DR7P6RX2PSB5AV
12/2, 2:09 PM] Aparna Bhattacharjee: Just thought of sharing… for those who haven’t done this …please do it ?
[12/2, 3:00 PM] Arvind Chittor: Ishro Home Anti Skid & Multipurpose RubIHr/Bathroom Mat/ Shower Mat/ Carpet/ Rugs/ Rainmat/ Swimming Pool Mat||2×3 Feet https://www.amazon.in/dp/B09C6DWSLT/ref=cm_sw_r_apan_glt_fabc_V9V27T3H2YB02CE7Y0ES?_encoding=UTF8&psc=1
[12/2, 3:00 PM] Arvind Chittor: This is another bathroom buddy for all ages.This also has many aids and bars to help :
https://dolphy.in/handicap-grab-bar
[11/16, 1:29 PM] Arvind Chittor: Ayurveda research is happening in coimbatore AVP I was admitted there . They have both patient care and research institution close to each other. Every single medication and patient details were collected during the time of admission and on discharge . It’s not as out in public like allopathic as it’s going to create a huge dip in medical businesses around the world . Not says as a controversial topic but this is fact . If Ayurveda is being opted instead. Many practitioners loose jobs and will be forced to shut down eventually.
[11/16, 1:30 PM] Sunish Thoniyan Nanu: What Arvind said is correct when it comes to young boys , they must be very cautious on such drugs on long term . If u check the graphs or figures ., if it strikes above the age of 45 most of us are put on 4 medicines life time like in my case . Aspirin , bp, diabetes , cholesterol. I don’t suffer from the three but as prevention from another stroke they force me to take it on mild dose . I initially thought its dubai so making me take . When came india and met top neurologist they said follow the same . Means patient to patient cases differ. . Let it be allopathy or Ayurvedha. We can’t take our own steps in stopping . Because the chances of re striking is there . So we are left to the statement “ prevention is better than curing “.
[11/16, 9:02 PM] Wilson Gaekwad: Allopathic medicine had got many side effect so we should rely more on natural Ayurvedic medicine. This is my personal opinion.
[11/16, 9:08 PM] Arvind Chittor: Unfortunately for maintenance of epileptic episodes. Allopathic is best and the Ayurveda doctors also don’t recommend to stop them immediately. So I request whoever here on seizure medication not to deviate from your neurologist prescription. I know a kid who did this mistake and is getting seizures everyday after relying on Ayurveda . Ayurveda gives more of a long-term advantage and impact for seizure. But to avoid any episodes in near future Allopathic is best.
As you all know seizures can cause more damage bto the brain if it prolongs or if one keeps getting multiple times.So must act wisely in this situation. Just a general thought that might be helpful for someone.
[11/17, 9:02 AM] Akshay Patil: Yes ,it’s the most important thing one should note , never stop your leveteracetam tablet without your doctor’s consent even after complete recovery
[11/17, 9:06 AM] Akshay Patil: Getting sezuires can further add to brain damage and get you back on level1 of recovery and anyone who has put great effort for recovery will definitely not want it??Some responses from FB
https://www.facebook.com/groups/672357726277203/posts/1893236624189301/
I didI’ve had a stroke due to Covid so I am vaccinated.
I have had mine. I was actually terrified to have it as only had Stroke 10 months ago. I am happy I have had both now.Thanks for the comments guys. Im having second thoughts because of its adverse effects. I lived with my mother who is 83 yrs old. Nobody will help us just in case something happens.My SS had his, no problem. Way better than a ventilator!I had mineHad mine, no side effectsToo scared.AdminAs an overweight diabetic I was afraid not to get vaccinated. I got my jabs and no problems.Done and getting booster 9-30. Pfizer, I wasn’t concerned about it and had no problems. I don’t have other health conditions. My doctor said absolutely yes do it. I live in an assisted living facility and it was required. I probably would have on my…
Got mine both shots Pfizer no problems whatsoeverMy stand is that it’s my body, my choice. I believe it’s a political weapon.I’m vaccinatedGot itGot itI had 2 strokes, I have a seizure disorder, endometriosis and chronic migraines. I got vaccinated and I was just thirsty and sleepy. Save yourself and get the shot.Fully vaccinatedI got mines and had no problemsI got vaccinated by all my docs requestsHad it done ages ago.Had both mine, pzier, had no problems withceitherMy doctor advised, I got and no side effectsI had my first Pfizer vacation on SaturdayI’m vaccinated. I felt a little crumby the day after shot #2. But no big deal!Got itI’m taking all the help I can get! For the sake of us all, PLEASE get the shot.I did it. No bad side effects etcRet military so I’m use to fit. Only short term side effects like the flu short I was tired for a few hrs. It’s a know effect to happen when it’s working.To be safe, we vaxxed up now waiting for the booster.I won’t do it . There’s just not enough information out there for me yet.Nope I didn’t.I did it even tho I had it.Iam 52, 40 months post stroke. My neurologist advised go ahead for vaccination. I took two doses of indian made covaxin. so far no side effects.Get the Vacs U lived thru a stroke don’t let covid take U outNot taking itFully vaccinated with astrazeneca, no issues.No problem
This is frequently discussed on our Support Group as well. Here a post to inform :
STROKESUPPORT.INCan stroke patients take the Covid vaccine ? – Stroke Support IndiaCan stroke patients take the Covid vaccine ? – Stroke Support India
From TBI FB groupElizabeth MountainI heard the mozart effect had been disproved but I believe there evidence it helps with epilepsy, and I use music with my brother s recovery but there are other times he finds it too much to listen to musicJohn D ColeI Find that if you constantly change the type of music you listen to it stimulates the emotions in different manners.Nicole Shardlow WilleyI’m a music lover, but post tbi and subsequent concussions, I find it very irritating and sensory overwhelming.Hardeep SodhiNicole Shardlow Willey yes for many post stroke/TBI music becomes a challenge.TBIREHABILITATION.WORDPRESS.COMMusic/Music therapy – TBI RehabilitationHardeep SodhiKostas Pantremenos thanks much for the link. For a layman such as me, understanding will be an ask but certainly will try…Woodring MichealNew research has found that music therapy sessions have a positive effect on the neurorehabilitation of acute stroke patients, as well as their mood. Mar 5, 2020
https://www.sciencedaily.com/releases/2020/03/200305203539.htmSally PeckIt probably depends on the person and the part of the brain that is injured.Some responses from FB :John McDowell
Definitely! post stroke for some strange reason I found listening to music from my youth (the 70’s) very therapeutic and ten years later I still play it!!
Steve MarsOne of the first things I realised after a few days in hospital was that my “music file” was missing. I knew music had been very important to me but that was about the extent of my memory. I had my event well away from home so had no access to my music. When my sister, who used to visit every day discovered this , she went home and made me a cassette (we are taking 2000) and bought me a cassette player. When I listened to the cassette it was a revelation, somehow I remembered the music, and knew Liz had tried to choose music which was important. but also knew it was not “my” music.Later when at the staff asked for my list of what to re-learn drums and guitar were two of the six must do’s. (Along with tennis , motorbike , dancing and roller blading) they said be serious …walking? writing? reading? get serious.!Anyway , when I walked out of hospital five months later and caught a coupe of planes home, Yes I am one of the very lucky stroke recoverers, I set about relearning my music, basically had to play about 300 or so albums, and a similar number of CD’s…loved the way how playing and listening to one would mean that a whole hunk of other associated memory would return.Then the drums…independence, control over the ability to do different things with your arms and legs at the same time is essential, and I was so pleased and excited when that happened , probably within a year or so. I am now quite happy to perform in public.Never much of a guitarist, but always enjoyed the challenge, again after a year or so strumming songs was no real problem, but may be bit of an exaggeration to call it music.About four years ago I signed up for an on line classical music course, and even though progress is very slow I do enjoy so much, try to do about 2 or 3 hours a day and every small improvement and playing something that starts to sound like real music is just wonderful.Scarcely research based evidence I accept, but for my 21 years post my stroke my connection with music continues to be an essential element in my ongoing recovery.Hardeep SodhiSteve Mars that is a wonderful recount. Would love to have a video or two of your performances !Anecdotal evidence is as important as research based. To me, the strong motivation and ongoing interest in ongoing efforts it may provide a stroke affected is very valuable.Matt RamseyWhen I suffered my 15th stroke and had to have a craniotomy, it seemed like all things had changed; then, 5/6 years after the fact, I sat down behind my drum set again.I chose to switch to play the bass drum with my other leg/foot; but, once I dusted the cobwebs off, I played much stronger, much faster and much more rhythmically syncopated than I ever had, previously.I got together with guitarists and a bassist and we started playing at different venues for money.Hardeep SodhiMatt Ramsey wow that is wonderful ! and after the 15th stroke – you are an inspiration man !Hardeep SodhiWe are having a zoom event to discuss this on 7th August 7 PM ( IST ). Join in if any can. Here the link to register :From TG group
Akansha:
Hi, in our case baclofen (suggested by the therapist )didnt help my husband and led to siezures. Plz consult with your doc accordingly.
We were told by our neuro that it weakens the threshold of the muscles and leads to siezures.In some cases, might be helpful if taken with controlled dosage and under guidance of neuro.
phalguni Arasanaghatta:
My father was also advised to take liofen 10 – but we avoided . We are trying through physiotherapy. For him shoulder stiffness is the issue. Physiotherapist said better to manage through exercises than pumping in medicationsCoz,he is already having some sensitivity issue for the existing medicines..
Jansi – WA:
One question for thr grp. Did anyone face urine and stool bowel control issues ? Is it because the person can’t control or doesn’t realize or is it coz they can’t intimate anyone ? Does it get better with time and can anything be done to reclaim bowel movement ?
Jennifer Menezes:
I faced this issue for close to a month post stroke….and did not do anything specific to reclaim the movement… initially I wouldn’t even realise but mine got better with time..this has been my experience that it gets better with time.
Yes per my experience everything gets better with time and doesn’t remain the same..all we need is patience during this hard time..?
Sreenath Kesava ( WhatsApp )
I have had a bascilar stroke 2 and half years ago. Im bed ridden and no movement on right side and very limited movement on the left. So in diaper.
I was on catheter for first 5 months. Later on, moved home and catheter was not easy to manage. For a few days, it was just diaper with change every 2-3 times. In a little while, I realised i could feel the pressure in the bladder and i could ring a bell to indicate i have to go so the nurses could give urine can. So the change every few hours stopped. Although I could feel the need to go, there was no ability to control. I usually had 20 seconds from the feeling to passing. The feeling came every 2-3 hours. And about 400ml each time (i am on peg feeds so only on fluids also).
There has been no difficulty passing and no urinary infections till date. However, over time, the frequency has increased and i need to go every 1.5- 2 hours and tolerance has reduced and the nurses have to react faster. Off late, maybe 2-3 weeks, it has become difficult to paas as well, not painful, just unable to empty my bladder fully. Don’t know what to make of it.
The bowel movements have not been that easy.
For about 1 and half years, there was nothing. Administering enema also gave no results. So, every 3-4 days they had to do what is known as PR usually (basically, manual extraction). It was very uncomfortable and painful period.
For 6 months or so, enema is working, so every 4-5 days its enema administration. On very rare occasions, due to some infection and subsequent loose motions, it has passed on its own. There has been no dearth of medicines and laxatives we have used. Recently, since fy physiotherapist has started making me stand with a standing contraption, on very rare occasions, the motion comes by itself when I’m standing (presumably because of the vertical pressure). I have no control however.
I’m hoping it will get better this year..
On Tue, 13 Jul 2021 at 12:40, Stroke Support India <[email protected]> wrote:
Thanks for your reply. Would be interested in knowing the results all the same. Would appreciate if you could keep me posted.
Thanks
Best Regards
Hardeep
On Tue, Jul 13, 2021, 12:38 PM Vincent Thijs <[email protected]> wrote:
Dear Hardeep,
Unfortunately we are currently only recruiting in Australia and New Zealand.
VincentFrom: Stroke Support India <[email protected]>
Sent: Monday, July 12, 2021 7:03 PM
To: PESTO <[email protected]>
Subject: [EXT] The Pesto Trial
Hi !I refer to following post on FB :
”
The PESTO trial is looking at whether a drug called etanercept (which is commonly used to treat other illnesses), is effective in helping relieve some symptoms of stroke.
The project was one of the recipients of the $1 million ‘Return to life, return to work’ clinical research grants for 2019, from the MRFF and Stroke Foundation.
”As a Stroke Support Group we are keen to know the latest in stroke treatment. Am Wondering if Indians ( based in India) can participate in this trial and if so, how.
Would appreciate a revert, thanks.
Hardeep Sodhi
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.
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 ?Adding here some more information on Wernicke’s aphasia :
Symptoms
Regarding speech and comprehension, people with Wernicke’s aphasia may:string words together to make sentences that don’t make sense
make up words that have no meaning
be unaware of the mistakes in their speech
deliver words in a normal melodic line, even though the content may not make any sense
articulate their words normally
have difficulty repeating phrases
add words when trying to repeat someone
interrupt others and speak rapidlyTaken from :
https://www.healthline.com/health/wernickes-aphasia#symptoms
[6/23, 10:39 PM] Hardeep Sodhi: Thinking further , indeed this can be a very frustrating experience for the family around. Will taking help of a psychiatrist – if the affected may be persuaded – help ? Is this a frequent occurrence and how is it managed ?
[6/23, 10:51 PM] Hemina Dawar: Thank you for raising this topic. I agree with the discussion above, to add the role of post stroke speech therapy is generally understood to be limited to non fluent aphasia ( where a person is unable to speak). From my experience, people focus more on physical recovery more after a stroke. But here I need to bring focus on the parts other than speech that are generally affected post stroke. Best way is to have a proper assessment covering not only neuromotor skills but also cognitive linguistic skills and post stroke participation of affected person in communication.
[6/23, 10:52 PM] Hemina Dawar: For reference, cognitive linguistic skills include Attention (selective concentration)
Memory (recall of facts, procedures, and past & future events)
Perception (interpretation of sensory information)
Insight & judgment (understanding one’s own limitations & what they mean)
Organization (arranging ideas in a useful order)
Orientation (knowing where, when, & who you are, as well as why you’re there)
Language (words for communication)
Processing speed (quick thinking & understanding)
Problem-solving (finding solutions to obstacles)
Reasoning (logically thinking through situations)
Executive functioning (making a plan, acting it out, evaluating success, & adjusting)
Metacognition (thinking about how you think)
[6/23, 10:52 PM] Hemina Dawar: A proper assessment will always lead to proper rehabilitation and treatment plan.
[6/23, 11:17 PM] Hardeep Sodhi: Thanks for your inputs @Hemina Dawar ji….that is a lot to process, but stands to reason since brain impacts pretty much everything…wonder if such assessment is standard process or will vary from situation to situation or one therapist to another….are there standardized tests for these that a lay person can administer at least for some prima facie analysis ?
[6/23, 11:25 PM] Hemina Dawar: Yes sir there is a standardized test and every doctor/ therapist follows a proper protocol whenever he/she does an evaluation. All the tests that are clinically useful are validated and studied by the normal and clinically affected population before using them.
[6/23, 11:29 PM] Hardeep Sodhi: Ok, so the best will be if the affected could somehow be persuaded to undergo such test, which is an issue since, per him, there is no issue to begin with…
[6/23, 11:36 PM] Hemina Dawar: Yes Sir, I believe getting a proper evaluation done by a specialist will be better than self assessment. Also, if there is a denial for speech therapy then best way is to observe participation of affected person in daily conversations and his/her motivation to communicate.
[6/23, 11:42 PM] Radhika Poovayya: Yes,Hardeep ji, I have had patients walk out of my clinic in anger and families are helpless. For one client, he agreed for therapy after one year ,as there was an improvement and he felt the need. But it didn’t last for more than 2 months. Then the only resort is to give guidelines to families on how to cope.
There is limited research on wernike’s aphasia too for the reason that there are very less clients who seek therapy
[6/24, 12:08 AM] Hardeep Sodhi: Thanks for your inputs Hemina ji and Radhika ji ???
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..?
[6/15, 3:22 PM] Dr. Melitta Menezes: Initially Physios worked on muscle strength, flexibility, gait and such gross motor skills. While occupational therapists worked to teach ADL skills , and fine motor hand skills… These days however both focus on functional improvements considering the individual and their needs as a whole…
[6/15, 3:24 PM] Dr. Melitta Menezes: Certain skills may get difficult to learn not due to strength or movement deficits but due to difficulty with understanding and processing the steps of the tasks… Some occupational therapists are more experienced in handling these difficulties
[6/15, 3:25 PM] Dr. Sureshkumar Kamalakannan: Occupational therapists are trained and qualified to enable a person with a disability to get back to their usual activities of daily living, work, and leisure with or without the use of assistive devices and specialized techniques.
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.
