dreinke

Stroke Survivor - male
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  1. dreinke
    If only some group in the US actually was interested in the survivors here. :Tantrum: :2cents:
    http://www.stroke.org.uk/campaigns/stroke_policy/five_demands_for_action/index.html
    Five demands for action: The Stroke Survivor's view
    In the summer of 2007, the Department of Health undertook a public consultation on the first ever National Stroke Strategy for England.
    During this period The Stroke Association encouraged stroke survivors and carers to respond, and then collated over 500 individual and collective submissions. This response was overwhelming, and the depth of feeling was apparent with so many people taking the opportunity to recount their experiences of stroke services and voice their opinions on how they should be improved.
    While reading the responses it became clear that five particular themes were being mentioned over and over again. These became the Stroke Survivors’ Five Demands for Action which were endorsed by a stroke survivors summit that took place in the Houses of Parliament on 23 October 2007.
    The National Stroke Strategy for England was published in December 2007 but we did not want anyone to forget the passionate responses to the consultation. We have therefore produced a booklet to capture some of the comments, as well as providing information on the stroke strategy and how to campaign in your local area. Download a PDF:
    1. Stroke must be treated as a medical emergency at all times.
    2. All stroke patients must be taken immediately to and spend
    the majority of their time in a stroke unit.
    3. All stroke survivors must receive a smooth transition from
    hospital to home.
    4. All stroke survivors must receive all the rehabilitation and
    long-term support that meets their specific needs.
    5. All transient ischaemic attacks (TIAs/mini strokes) must be
    treated with the same seriousness as stroke
  2. dreinke
    My main blog Dean's Stroke Musings has been chosen as one of five finalists for Best Medical Weblog in the patient category in the 2010 Medical Weblog Awards, hosted by Medgadget.
     
    I am thankful to be in such company. Check out all the finalists here. http://www.medgadget.com/archives/2011/01/the_2010_medical_weblog_awards_finalists_sponsored_by_epocrates_and_lenovo.html
     
    Voting is from Thursday, Feb 3 to Sunday, Feb 13.
     
    If you think I deserve it please vote for me. :thumbsu:
     
     
    Polls Are Open in The 2010 Medical Weblog Awards Sponsored by Epocrates and Lenovo
    You can vote here:
     
    http://www.medgadget.com/archives/2011/02/polls_are_open_in_the_2010_medical_weblog_awards_sponsored_by_epocrates_and_lenovo_1.html
     
    Dean
  3. dreinke
    I know that this is stepping on PT responsibilities but I think that all PTs and OTs should have to produce something like this for their patients. Take this with a grain of salt, I do not intend this as medical advice, but education for yourself so you can be a better patient.
     
    When I first got out of the hospital, still in a wheelchair I would sit staring at people walking to see what they were doing right that I couldn't do. My PTs did not have any videos of human gait that would have helped me understand where I was going wrong, all I got was do it this way with no breakdown into smaller pieces. I finally fired that PT and went to one that could at least see what was going wrong. here are some videos I found on the internet if you want to try and look at them and improve on your own.
     
    Also read a complete textbook on human gait, way over my head but at least it gave me a few muscle groups to strengthen at the gym. I still waddle but the leg swing out is significantly reduced.
     
    Gait Analysis: Normal and Pathological Function
    by Jacquelin Perry, Bill Schoneberger
     
    Besides a human walking there is a model you can slow down, speed up and turn
     
    http://www.frontiernet.net/~Imaging/gait_model.html
     
    http://library.med.utah.edu/neurologice ... ormal.html Movies from the NeuroLogic Exam and PediNeuroLogic Exam websites are used by permission of Paul D. ****, M.D., University of Nebraska Medical Center and Suzanne S. Stensaas, Ph.D., University of Utah School of Medicine. Additional materials were drawn from resources provided by Alejandro Stern, Stern Foundation, Buenos Aires, Argentina; Kathleen Digre, M.D., University of Utah; and Daniel Jacobson, M.D., Marshfield Clinic, Wisconsin. The movies are licensed under a Creative Commons Attribution-NonCommerical-ShareAlike 2.5 License.
     
    Biomechanics of gait walking
    http://www.utoledo.edu/hshs/kinesiology/pdfs/Biomech_of_Walking_and_Running.ppt#257,2,Biomechanics of Gait Walking
     
    http://www.cse.ohio-state.edu/research/ ... index.html
     
    A comparison of normal and stiff-legged gaits.This one even includes some stair walking
     

     
    Contains the skeleton walking
     
    http://www.youtube.com/watch?v=8s0FY4D_ ... re=related
     
    Biomechanics of the foot http://www.footkneepain.com.au/
     
    Primal Pictures human anatomy demo
     
    sitting to standing, toe flexing, head turning
     
    http://www.youtube.com/watch?v=1Ohpyc2K ... re=related
     
    Some free demos available here
     
    http://www.anatomy.tv/
     
    animated gait in slow motion
     
    http://www.nsf.gov/news/mmg/media/media/gait_final1.swf
     
    movement analysis here go to site map/gallery
     
    http://www.musculographics.com/index.html
     
    demo video looks good I wish all therapy depts. could have this in order to break down exactly what stroke survivors are doing wrong so the indivdual pieces could be corrected.
     
    http://kine.is/modules.php?op=modload&n ... load&cid=2
     
    This gives the various phases of gait
     
    http://moon.ouhsc.edu/dthompso/gait/intro.htm
     
    A lot of this is very pertinent to me because my pre-motor cortex is dead, which means planning of complicated movements is not being automatically done so I have to manually think about and fire the individual muscles. Of course this is my own self diagnosis, which the patient should never do.
     
    http://www.lowerextremityreview.com/news/in-the-moment-stroke
     
    Now if we could get the 3d movements and stroke rehab mapped to standard walking then we might get to where a damage diagnosis could be correlated with the therapy prescriptions.
    http://oc1dean.blogspot.com/2011/01/3d-movements-and-stroke-rehab.html
  4. dreinke

    rowing and stroke rehab

    By dreinke,

    We have a rowing machine in our basement, sometimes called an ergometer. This past week I started using it again. The various therapies involved are turning on two light switches with my affected hand, it looks ugly but what the hell. Walking down the steps does still require that I put my good hand against the wall as I come down. My form on the rower is pretty much straight-armed, this is on purpose, to lessen and counteract the spasticity of my left arm. I do still use the spasticity of my curled left fingers to keep a grasp on the handle. The back and forth on the slide strengthens my quads and the slide up works my hamstrings. Currently only doing 750 meters. I'll work my way up to the race length of 2500 meters in the next couple of weeks. After I am done with my workout I just use my left leg to go back and forth on the slide, mainly to get the hamstring working better. :Beer-Chug:
    I tried this at the gym, but most of the other persons on the rowers are trying too hard and grunting while doing it. :bouncing_off_wall: :tired:
  5. dreinke
    A new research center at Stanford will address mobility disorders with powerful 3-D simulations of a patient's movements
    http://news.stanford.edu/news/2010/december/delp-movement-research-123010.html
    I did have this done as part of a research study I was in on ankle movement but was not able to see those results. I could see an extremely important use for this for all PTs working with stroke gaits. And maybe then someone will be able to identify very specific small movements to work on. My first PTs could only demonstrate the correct way to walk and since my walking was pretty screwed up their admonitions didn't work
  6. dreinke
    http://www.medgadget.com/archives/2010/04/robotassisted_post_stroke_therapy_beneficial_even_for_late_starters_1.html
    A late start to stroke therapy has been thought to be detrimental to getting much benefit out of it, so exercises must begin as soon as possible. A new study, published in the New England Journal of Medicine, has now shown that even late starters can see substantial improvement when using robotically assisted therapy.
     
    I don't know what took them so long to figure this out, survivors could have told them this decades ago.
     
    This belief is represented in most stroke associations and doctor/therapist statements. I don't believe this is limited to only robotically assisted. I bet it takes 10-15 years before this statement shows up in these places and 30 years before it is taught in schools. So now when you see articles extolling starting therapy immediately reply to them and quote this article back to them. :2cents:
  7. dreinke
    I have probably answered dozens of questions like this on stroke forums. The medical staff is doing a lousy job explaining this.
     
     
     
     
    Your doctor is quite remiss in not telling you about the physiology of the brain. There is a Circle of Willis that supplies blood to the brain. That is fed by four arteries, two carotid and two vertebral. Just because one or more arteries are blocked does not directly cause a stroke. The usual case is that the narrowed artery tears, clots and the clot lets go, traveling to the brain. You normally do not clean out a totally plugged artery because of the high risk of sending debris to the brain. I had a totally blocked right carotid artery for four years now and I don't worry about getting a stroke from that. Ask your doctor about this to see if s/he understands basic brain matters.
     
    But then I am a stroke-addled survivor, so don't listen to what I have to say, your doctor is infallible, listen to them.
  8. dreinke
    A theory of mine, I don't think I have dreamed since my event and was wondering if that was causing some of my fatigue. As the episode Night Terrors in Star Trek Next Generation shows what happens when you don't dream. Please respond if you have or have not dreamed and list the fatigue you have. I can easily fall asleep anytime during the day even with 12 hours of sleep.
     
    SYMPTOMS: A person lacking REM sleep will show all the general symptoms of sleep deprivation, such as reduced productivity in the workplace, daytime sleepiness, and not handling stress well. Losing REM sleep makes people more sensitive to pain, too. In addition, REM sleep seems to be necessary for verbal skills. A lack of it will cause a person to not be as creative in using language, and they will not do too well on language tests.
     
    As both these articles state; The success of a stroke patients rehabilitation plan is heavily dependent on sleep.
     
    http://strokerehabonline.com/2010/06/sleeping-and-sleep-for-stroke-recovery-speed-up/comment-page-1/#comment-503
     
    http://ezinearticles.com/comment.php?Sleep-is-an-Important-Aid-to-Stroke-Recovery&id=3866857
     
    What are your dreams like and do you have them? Do you dream pre-stroke or after stroke abilities? :cloud9: :2cents:
  9. dreinke
    I brew homemade beer. This is a multi-step process, First you boil 3 gallons of water with selected grains, malt extract and hops(wort), cool it down to 70 degrees to allow yeast to survive, add two gallons of water. The proper way to cool down the wort is to set the 5 gal. kettle in the sink with rafts of ice cubes. There is no way I can do this with a barely useable left arm/hand. So I siphon it into the fermenting bucket, filled with ice water. This of course introduces the possibility of contamination, but allows me to do this part by myself. The fermentation continues for 3-4 weeks and then is transferred to a glass carboy for final fermenting and settling of solids. Two weeks later after fermentation is done, the yeasties have eaten most of the sugar, turning it into alcohol. Siphon it to a bottling bucket, add 3/4 cup of sugar - This is to give the leftover yeasties something to chew on and carbonate the beer in the bottles. Bottles are filled and capped. I ask a friend over for this because the capper I have is a two-handed affair and it would take me forever to get it all done. The 5 gallons makes 48-50 bottles of beer. For the first 2 years I refrained from any alcohol because I thought it might slow up my recovery. Then I realized that recovery was going extremely slow anyway and I might as well enjoy a few brews during it. The current batch is raspberry and cherry stout. My coffee stout is better tasting. Oops, that experiment didn't work.
     
    This is all about compensation rather than doing tasks to help recovery.
     
    This article
     
    Alcohol Consumption and Functional Outcome After Stroke in Men
    at http://stroke.ahajournals.org/cgi/content/full/41/1/141
     
    Selected lines are as follows:
     
    A meta-analysis found that consuming less than 1 drink per day was associated with a significantly reduced risk of stroke compared to nondrinkers.
     
    Light-to-moderate alcohol consumption has been associated with reduced risk of total and ischemic stroke. However, data on the relationship between alcohol consumption and functional outcomes from stroke are sparse.
     
    Don't consider this an endorsement of alcohol being good for your recovery.
    :beer:
     
    Ask your doctor for guidance on this. Women you are on your own, sorry.
  10. dreinke
    I read PT forums. This one on stroke rehab was appalling.
     
    http://www.physiobob.com/forum/neuro-physiotherapy/4992-stroke-rehab.html
     
     
     
     
    Dear fellow physios,
     
     
     
     
    i think i need a helping hand with a stroke patient.
     
     
     
     
    He has had a RIGHT CVA about 20 days ago. Unfortunately, they let him go from hospital 10 days after the stroke.
     
     
     
     
    I started seeing him last week and has no movement at all on LEFT arm.I read that no shoulder shrug or finger movements are not good prognosis.I am using electrical stimulation, massage with a brush, passive movements and PNF patterns to re-learn the movements.Last Monday he had spontaneous adduction of LEFT SHOULDER that's gone again.Do you think his arm will recover?
     
     
    As for his LEFT LEG, he has no control of knee extension.How can we manage locking of the knee?
     
     
    Thank you all
     
     
    Not a single one of the answers even suggested that they look at the brainscan or diagnosis to see if the functions they were trying to get the patient to do were even possible. Every answer just assumed that all they had to do was to tell the patient to move this way and if the patient couldn't do that, well then obviously the patient is slacking. This corresponds to my earlier post on theoretical basis of stroke rehab
     
     
    I haven't quite decided yet if I should stick my neck out and take them to task, if I do I will create another id because that reply would probably get me kicked out.
    Banging my head against walls again because it feels so good when I stop.
    Dean
  11. dreinke
    I have been reading a new book, Deep Survival : Who Lives, Who Dies and Why by Laurence Gonzales.This paragraph on page 82 I think should be applied to us stroke survivors.
     
     
     
     
    Psychologists who study survival say that people who are rule followers don't do as well as those who are of independent mind and spirit. When a patient is told he has 6 months to live, he has two choices: accept the news and die, or rebel and live. People who survive cancer in the face of such a diagnosis are notorious. The medical staff observes that they are 'bad patients',unruly, troublesome. They don't follow directions. They question everything. They're annoying. They're survivors.
     
    Make yourself into a 'bad patient'. :roflmao: :ranting:
     
    If you don't make your medical staff uncomfortable in their not answering your questions then you need to try harder. Make them feel guilty and maybe they will go back to their associations and ask for details on what to do for stroke patients. Nothing else seems to be working.
     
     
    Remember, make sure you ask your medical staff for permission to be a 'bad patient'.
  12. dreinke
    This was from the student doctor network
     
     
     
     
    I've found plenty of TBI and SCI textbooks but was wondering if anyone knows of a good stroke rehab textbook, or do they not exist?
     
    http://forums.studentdoctor.net/showthread.php?p=10337446#post10337446
     
     
     
     
    Boy is this disgusting, our doctor instructors don't even have good textbooks,none of the replies answered the question. Not only are our existing doctor unknowing but the future ones will know nothing. Here was my reply;
     
    as a stroke survivor, I've spent years looking for decent stroke rehab information. Personally I don't think it exists. Actually there is one book that is good; Stronger After Stroke by Peter Levine Go to any of the stroke forums and it is obvious that survivors are not given any useful information. Therapists don't know any basis for their treatment.
     
    http://informahealthcare.com/doi/abs/10.3109/09593989409036399
     
    As in the Swedish study, although the respondents were able to describe their treatment choices, they had difficulty explaining the underlying theoretical basis for their choice.
     
    All I can say is that you had better not get a stroke because no one can tell you anything useful.
     
    The World Stroke Organization is trying but we are 2400 years in the past when Hippocratic dictum that ‘It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’
     
    Good luck you have reached the black hole of stroke knowledge.
     
    To stump your teachers ask for the difference in recovery needed for penumbra damage vs. dead brain damage. I opine at www.oc1dean.blogspot.com, try not to be offended by my postings.
    My goal here is to get students thinking about what they don't know.
  13. dreinke

    nicotine and stroke rehab

    By dreinke,

    Nicotine Holds Promise for Stronger Stroke Recovery
     
    http://www.uleth.ca/notice/display.html?b=4&s=3995
     
    What you get with nicotine is the animals with stroke show better recovery and improvement. It speeds things up and you get to a higher level of rehabilitation.
     
    It turns out that nicotine, in contrast to amphetamines, acts in a larger area of the brain and seems to act where the amphetamines don't - in the motor system. That's a real advantage, because one of the big problems in stroke is loss of motor functions.
     
    I have never smoked and don't plan on starting or using patches.
    I'm sure that lots more research needs to be done on this.
    Remember a stroke-addled brain like mine should never be considered as worth listening to.
    I do wonder how this would compare to hyperbaric oxygen therapy.
     
     
     
    Don't consider this an endorsement of nicotine being good for your recovery.
     
    Ask your doctor for guidance on this.
  14. dreinke

    2010 top stroke blogs

    By dreinke,

    Know-Stroke.org http://knowstrokeblo...rapy-coach.com/
     
    Surviving a Stroke http://survivingastroke.blogspot.com/
     
    The Stroke Recovery Blog http://recoverfromstroke.blogspot.com/ Peter Levines' blog, you have to read all his entries.
     
    Barb’s Recovery http://barbpolansrec...y.blogspot.com/
     
    Recovering Stroke Survivor http://lori-recoveri...r.blogspot.com/ I'm not sure what language this one is in but Ill figure it out eventually.
     
    Stroke of Faith http://stroke-of-faith.blogspot.com/
     
    So what are you doing reading this one?
  15. dreinke
    Is the emperor wearing any clothes? I loved this parable. From all the research I have been reading I really can't tell if any of it is valid.
     
    My concerns are;
     
    1. There is no standardized definition of stroke damage. If you can't even define your starting point there is no way that research can be replicated.
    2. No one seems to be separating the spontaneous recovery from the recovery due to therapy.
    3. There aren't enough projects using scans to prove changes.
     
    Maybe I am too stoopid to comment on stroke research since million dollar words are used to keep us peons in the dark. They may as well write in Sanskrit.
  16. dreinke
    Sargeant Schultz ' I know nuthin' from Hogan's heroes. This seems to be a popular response from our doctors.
     
    Hippocrates from approx. 400 BC 'It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’ Back then stroke was called apoplexy. So in 2400 years we have barely moved in terms of stroke rehabilitation knowledge. If we get survivors in positions of power we won't take 2400 years to get something accomplished. My doctor definitely believed in this because he didn't tell me anything about either my stroke or rehabilitation.
     
    Einstein 'Insanity: doing the same thing over and over again and expecting different results.' Does this imply that all stroke survivors that believe in using neuroplasticity are insane for that belief? Or should we just ignore Einstein because we are smarter than him?
     
    I have not failed. I've just found 10,000 ways that won't work.
    Thomas A. Edison
    This goes with along with the Einstein quote, although I think that I will probably find millions of ways that won't work before I get neuroplasticity to work for some of my deficits.
     
    Breakfast saying for bacon and eggs - the chicken is involved but the pig is committed. The medical staff is involved but the survivor is comitted.
    So if you want something done give it to a survivor.
     
    'All strokes are different and all stroke recoveries are different'. I do believe the first part but the second part is just used as a crutch by the medical field to not do the research necessary to prove it one way or another. The second part can be proven wrong by a longitudinal research study following survivors for 20-30 years. Until we change this mindset we will always be on our own for recovery.
  17. dreinke
    Which is easier? I would go with world domination. Getting standard stroke rehab
    protocols would be like pushing an al dente noodle up a mountain. All the stroke
    associations have a vested interest in the status quo, therapists would have to
    realize that their training was incomplete, Doctors would lose their mythical know
    everything status.
     
    Hippocratic dictum that ‘It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’
     
    In 2400 years not much has occurred.
    I hope we get something in the next 10-20 years.
     
    Oh well, thats what happens when a stroke-addled brain thinks logically. And because I am so stupid I am working on the harder task of getting standard stroke rehab protocols.
  18. dreinke
    This sounds like something every stroke researcher should be doing after the protocols they are testing, mainly to figure out where the changes are occurring. The other thing to work on would be to find those survivors that have completely recovered and scan their brains with this to find out where neuroplasticity has moved the dead functions. If only I could figure out a way to get this type of question in front of those stroke researchers. If anyone has a clue please email me. I will stick my neck out to anyone including the stroke associations.
     
    A Wiring Diagram of the Brain
     
    New technologies that allow scientists to trace the fine wiring of the brain more accurately than ever before could soon generate a complete wiring diagram--including every tiny fiber and miniscule connection--of a piece of brain. Dubbed connectomics, these maps could uncover how neural networks perform their precise functions in the brain, and they could shed light on disorders thought to originate from faulty wiring, such as autism and schizophrenia.
     
    The brain is essentially a computer that wires itself up during development and can rewire itself," says Sebastian Seung, a computational neuroscientist at MIT. "If we have a wiring diagram of the brain, that could help us understand how it works." For example, scientists previously identified the part of the songbird's brain that is important in the birds' ability to generate songs. Seung would ultimately like to develop a wiring diagram of this structure in order to elucidate the features underlying its unique capability.
     
    I know this is probably decades away but if we(survivors) don't start putting future goals out there like President Kennedy did for the moon landing we won't ever get there. Stay tuned, I'll figure out some way to get a set of goals started.
     
    I sent an email to Mr. Seung thanking him for his work on this and pointing out the usefulness of using this for stroke rehabilitation research. We have to get stroke rehab research in front of everyone possible so if you see an opportunity to suggest something that may help stroke research please point it out to the persons involved. The squeaky wheel does get oiled and I plan on screeching like Red River oxcarts.
  19. dreinke
    And we wonder why there are so many stroke forums and websites set up by survivors trying to understand stroke rehabilitation.
     
    http://informahealthcare.com/doi/abs/10.3109/09593989409036399
     
    As in the Swedish study, although the respondents were able to describe their treatment choices, they had difficulty explaining the underlying theoretical basis for their choice. Difficulty providing a scientific and rational explanation for intervention may have implications for the future development of physiotherapy as a clinical science.
     
    In a survey of Swedish physiotherapists working in neurology, the treatment of individuals following stroke was found to be essentially praxis-oriented (What?)(Nilsson and Nordholm, 1992). The present study replicated the Swedish survey in order to compare the responses of Australian physiotherapists with those of their Swedish colleagues. The questionnaire, designed to establish choice of treatment, factors influencing and theoretical bases for the choice of treatment, and attitudes towards new methods, was sent to the 331 members of the Neurology Special Interest Group of the Australian Physiotherapy Association. The response rate was 72%. Respondents viewed experience working with patients as the most important factor influencing current choice of treatment. As in the Swedish study, although the respondents were able to describe their treatment choices, they had difficulty explaining the underlying theoretical basis for their choice. Difficulty providing a scientific and rational explanation for intervention may have implications for the future development of physiotherapy as a clinical science.
     
     
    And I bet I have a better understanding of the theoretical basis of stroke rehab than those physiotherapists. Read my posting on What my doctor should have told me about stroke recovery
    http://oc1dean.blogspot.com/2010/08/what-my-doctor-should-have-told-me.html
  20. dreinke

    standard stroke advice

    By dreinke,

    This has pretty much become my standard reply to survivors asking about recovery(not rehabilitation).
    The whole problem here is that the medical world does not have any clue as how to approach getting stroke survivors back to full recovery. They are hoping that your spontaneous recovery in 6-12 months is enough to satisfy you. What needs to be done is idenify the penumbra and those functions, these are helped by standard therapy protocols because you still have a limited ability to do those functions and repetition will help recover them. The second part is to identify the dead brain area and the functions they covered. This requires a totally different approach, mainly you need to neuroplastically move those functions to another part of your brain. Some therapies than might be able to accomplish that are; mental imagery, passive movement, mirror-box therapy, thermal therapy. I would say your crucial answer is to completely understand neuroplasticity and find therapists who understand how to do that. But what the hell do I know, I'm just a stroke-addled survivor,
    Dean
  21. dreinke
    I get this question from my wife. Shes a PT so any questions questioning the medical profession are seen as an attack on her training.
    For anyone else asking this question of me the answer is as follows. Hell yes, my original doctors proved that they were not keeping up with medical advancements. I live and breath thinking about this 24 hours a day. I have read numerous books on the subject and hundreds of research abstracts. I also read all the questions and answers on 12+ stroke forums on the web. So I am arrogant enough not only to think I am smarter and more knowledgeable than my medical staff but I know I am.
  22. dreinke

    Letter to the president

    By dreinke,

    After hearing that President Obama reads 10 personal letters a day I sent a letter to him recounting my efforts at stroke rehabilitation. I think he actually read my letter, I recieved a form letter in return thanking me for writing.
     
    The rest of the letter is just an explanation of what stroke recovery looks like to my eyes and it is not a good experience.
     
    This was one of the points I made.
     
    Start a 10-20 year longitudinal research project to get fact-based information on what works as survivors complete their recovery. What is really needed is a massive research program following the millions of survivors and documenting what works for recovery. Only by finding the facts can we actually have a decent discussion on what works and provide survivors with a palette of options to help them recover. This is what I think NINDS(National Institute of Neurological Disorders and Stroke) should focus on. There seems to be no way for survivors to find out what is occurring in NINDS probably because we are seen as old people with impaired intelligence.
     
    If you want to write here is the address:
     
    The White House
     
    1600 Pennsylvania Avenue NW
     
    Washington, DC 20500
     
    I double dare you to do it to!
  23. dreinke

    stroke fatigue

    By dreinke,

    This is one of the least understood side effects of a stroke. While I was still in the hospital if I had 10 minutes between therapy appointments I would fall asleep. I was also on the general muscle relaxant, baclofen, which was supposed to lessen my spasticity. It didn't do that at all so I was left with the side effect of extreme fatigue. Finally talked my doctor into trying something else. Zanaflex, which was no better, also a general muscle relaxant.. Since there was no diagnosis on what was causing the fatigue I self-diagnosed myself that I had sleep apnea. It was proven correct after going thru a sleep study in which I would quit breathing 6 times an hour. This was a fairly mild case of sleep apnea but I did convince my doctor that I wanted to get a CPAP machine. What a mistake. With the positive air pressure going into my nose constantly, I had to actively concentrate on my breathing to make sure I could exhale against the pressure. It worked for about a week but I did not get any lessening of the fatigue. I finally quit using it during the second week when one night I spent two hours concentrating on breathing thru the mask. At that point I decided that living with the apnea was more restful than trying to use the CPAP machine. I have no idea what waterboarding feels like but that is how I would describe the feeling of breathing against the CPAP machine.
    I have heard that our brain is about 2% of our body weight but uses 20% of the energy, so the speculation is that the brain is rebuilding as it recovers and needs that much extra energy.. If I want to function at work I have to have a large cup of coffee. On weekends I can sleep for 10-12 hours or take 2 hour naps during the day. Personally I think there is a chemical imbalance in the brain after a stroke and researchers just need to focus on that. Recovery could occur so much faster if we all weren't battling fatigue all the time. For myself I am still quite cardivoascularily fit, resting heart rate of 53 at age 53 puts me in the athlete category. If I am an athlete, why am I so fatigued all the time?
  24. dreinke
    Sleep is another time that I need to constantly think about what to do to keep my stroke therapy going.
    I used to have a hand/wrist splint for nighttime use that kept my fingers and wrist straight but after 3 years of use the plastic rotted and it was time to be on my own. Specifically how to reduce the spasticity in my finger flexors, biceps, lats. If I lie on my back my left arm will crawl into my lap. So I put my
    hand under my butt, except that it is a clenched hand and during movement during the
    night will end up in my lap. I try to hold my left arm straight out to my side as I
    fall asleep by putting a pillow on it. As I wake up during the night if I am lying on
    my left side I will place the whole arm between the legs to keep the arm straight.
    When I try to lie on my right side i place my left hand under my pillow under my head
    and flatten out the fingers. With all the thinking and moving about during the night
    there is very little restful sleep taking place. Napping during the day is even worse
    because keeping the arm straight becomes impossible.
  25. dreinke
    This is only my vision, please add your comments. I'm sure a medical person doing
    this would come up with something different.
    A scan(CT or MRI or something even newer) is done showing the damaged areas of the
    brain, the dead area and the penumbra. This is then mapped to a 3d representation
    with the medical staff enumerating the damaged area functions. The penumbra
    representation is probabbly the most important since this is the area that normally
    spomtaneously recovers in 6-12 months. Penumbra recovery is what most therapies like
    CIMT depend on. This is where the 'Use it or lose it' statement comes from. Dead area
    recovery is much more difficult and requires neuroplastically moving control to
    another location in the brain. For extreme recovery there is this girl with an early
    stroke with only half a brain.
    http://www.pbs.org/saf/1101/segments/1101-6.htm
     
    I know that currently the penumbra is not scanable but until it is any therapy
    protocol is just a shot in the dark.
    So the therapies for penumbra recovery should be completely different than the
    therapies for dead brain recovery.
    Preventing another stroke is not an area I have any expertise in, so I won't comment.
     
    Penumbra recovery would have a list of therapies mapped to recovery of impaired
    functions, including the efficacy of those therapies.
    Dead brain recovery would also list therapies mapped to recovery of dead areas.
    Most of the research I have seen makes the assumption that their protocol is what
    causes recovery and there is never any discussion of spontaneous recovery being the
    cause.
    Based on this we should be able to ask our therapists for proven therapy protocols
    that map to the damage specifically seen.
    With this information we will be able to tell what is relatively easy to recover and
    what may never recover, so rather than our doctors not telling us anything about our
    recovery they may be able to say with a lot of hard work you can recover these
    functions.
    With two lists we could see what researchers have proven and add our personal
    experiences to them.
     
    The 3d scanning ability is available now. Penumbra scanning is something to ask research colleagues on. The lists of therapies for penumbra recovery vs. dead brain recovery is something that survivors could do. Somehow we have to get this in front of all the stroke asssociations across the world, and ones like Society for neuroscience. Maybe an article in World Stroke Organization magazine, International Journal of Stroke.
     
     
    Ok, It is submitted as a viewpoint article to International Journal of Stroke. I doubt it will get printed but at least the editors can discuss. I would highly recommend others to submit viewpoint/opinion articles to them. I know it mainly is expecting submissions from doctors/researchers but sometimes we have to shout to be heard.
     
    Dean