Life is too short to be caught up in pain from the past. Welcome to a new day! Open your mind and your willingness to take new pictures of this glorious life. I wish you all the very best in your personal journey. Please feel free to open your hearts in these pages.

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14


Name:
Vanesa Montoya (vatoya@gmail.com)
Date:Wed 19 Jan 2011 09:35:12 PM EST
Subject:The story of my mom´s ischemic stroke after two months
 Dear Dr. Jill, We live in Calarcá a small town in Colombia (South America). Your story has come my way just today and could not refrain myself to talk about my mom’s . She is 48 years old and last November 8th 2010 she suffered a severe stroke which affected three lobules (frontal, parietal & temporal). She resulted with a right side paralysis and with strong difficulties to express herself. The most terrifying fact is that she was alone at home (I live in another town and my grandma was traveling) and could not contact any one. It was only after one day that we rescued her. Up until now, doctors do not know the cause. They keep on running tests on her and it seems that it could be a hypercoagulation disorder however it is not sure for now. In three months doctors will take another round of tests. My mom is doing great. She keeps herself very motivated, it’s impressive. Of course she is under antidepressants (sertraline) however she continuously shows good character and is willing to do all therapies needed. Her motor functions have improved. She can walk acceptably and has begun to move her right hand. Language wise has been of course the most affected ability. She can repeat sounds easily and once you give her a hint of pronunciation she can say a word however, her speech in no coherent and instead uses gestures and intonation to make herself understand. I’m so proud how sharp mom is in trying to express her with other resources. I would very much like to help her more and to have new ideas and new resources to stimulate her bright brain. I´ll try to get your book. In case it helps her somehow, grandma and I are ready to share more info about mom´s case and her recovery.
 
 
13


Name:
Marie Darkes (mdarkes@hotmail.com)
Date:Mon 10 Jan 2011 03:12:30 PM EST
Subject:Thank you
 Thank you for having this forum. Thank you for your concern when I contacted you about my initial post. This forum allows me the very rare opportunity to share my experience and to hope that others will read and benefit from it. It is a light within what has been a very confusing and frightening experience. Thanks for helping to pull me out. Marie Darkes
 
 
12


Name:
Marie Darkes (mdarkes@hotmail.com)
Date:Sat 08 Jan 2011 03:33:52 PM EST
Subject:Open communication
 Why do you not post all comments? I took the time to write an explanation and comment very relevant to this forum with a message important for people to hear. It has disappeared into cyberspace (i.e. has not been posted). I am asking you - why not? There are aspects of Dr. Jill's experience that, in less auspicious circumstances (i.e. she got state-of-the-art care) might have had less informed and insightful people looking at her askance. So, what's the problem with posting my confusing yet legitimate and very real experience?I hope that your forum is a credible one and that your aim is to help people not silence them. There are already enough people out there attempting to do that. Marie Darkes
 
 
11


Name:
Marie Darkes (mdarkes@hotmail.com)
Date:Tue 04 Jan 2011 12:22:39 AM EST
Subject:Flicker vertigo/photosensitive epilepsy/ PowerPoint + possible stroke
 Some time ago I wrote about a disturbing and damaging experience I had involving a PowerPoint presentation while attending a Canadian university. This experience involved exposure to quickly flashing, widely varying images (and the light) from a PowerPoint presentation causing me to have severe problems with balance and what I now know to be complex partial seizures in which I lost control of my movements and sometimes blacked out. That I do have this form of epilepsy was confirmed when driving without sunglasses one day a couple of months ago with the rising sun below the treeline, the sun flashing through the trees caused me to lose control of my movements - fortunately I was close to my destination and the seizures took place where there were people both to witness them and to help me: My arms and legs moved in jerky and uncontrollable ways so that I can only describe myself as "walking like a robot". Although my condition had been deteriorating - when I wrote before I was walking with a cane or handcrutch, I worked hard to improve my physical condition and was temporarily able to walk unassisted although I had several accidents due to my poor balance and coordination and muscle weakness that resulted in me injuring myself in fairly significant ways). My strength and coordination were deteriorating but my reaction to the flickering sunlight was unmistakable. I was not wearing sunglasses because most of the doctors I saw were extremely skeptical that I could have this relatively rare condition preferring to believe that I was suffering from a "psychosomatic illness". I cannot tell you how damaging this kind of pronouncement is. When I regained some of my physical stamina and was able to dispense with the handcrutch (as I had been able to temporarily before this, but always having to return to using it) I internalized this idea of psychosomatic illness berating myself severely for how I could have "done such a thing" - even going so far as to write the producers of this forum to urge them to remove my post. To try and make a long story short, I wasn't wearing sunglasses (polarized sunglasses protect from the effect of flashing light) because I thought I was, indeed, making it up and just being stupid and paranoid. Because of this, I suffered these seizures that were entirely avoidable. I am writing to tell any of you who post here that if you are able to achieve a remission or improvement in your condition through your hard work and dedication to your health, don't let any doctor or health care personnel convince you that their suspicions of "conversion disorder" or such drivel are proven. You have simply achieved an improvement or remission. Enjoy it, rejoice, and pray that it continues. I do not want to take anything away from the doctors or health care personnel who investigated my condition seriously and showed me respect and concern; I do, however, want to caution health care providers about the extremely damaging consequences of labeling someone as imagining an illness just because you can't figure it out - or aren't really trying to. In fact, I am wondering if the enquiring physician who delves into a puzzling case with care and concern and determination is a thing of the past. Anyway, I am back to my handcrutch (as usual) and muscle weakness and I am taking some medication that is helping the muscle tightness that I experience so that I can sleep at night. But NOBODY is ever going to make me feel stupid for wearing sunglasses again. The strobe effect is well documented, and almost everyone I talk to has some story of how flickering or flashing lights bother them or someone they know. I have even heard two documented stories of people who had experiences IDENTICAL to mine at Canadian universities. What I have wanted to do is warn people that PowerPoint is a potential trigger for a debilitating neurological event in susceptible people. I have been stymied in my attempts to do so. That is why I am writing here as well as to encourage others with health issues not to accept the conversion disorder/psychosomatic cop-out some members of the medical profession promote. The severe depression that I experienced as a result of internalizing the "crazy woman/psychosomatic imaginary illness designed to cover her 'failure' at university" - this depression was EXTREMELY severe and was also entirely avoidable. I cannot tell you how much it hampered my already difficult situation. I pray that it will never happen to another soul. Thank you and good luck to all of you (us).
 
 
10


Name:
jaime (jaimem730@aol.com)
Date:Fri 31 Dec 2010 10:33:07 PM EST
Subject:my sister had an ischemic stroke 7 mos ago
 My 43yr old sister had a massive stroke 7 mos ago in may. A left sided stroke she was unable to speak,walk, or move her rt arm.Since the stroke she can now walk with a brace move her rt arm but not her hand and her speech is slowly improving she talks as though she is on a 4th grade level. For the most part she is depressed and ashamed of how she looks. I'm concerned because the doctors say that after 1yr where ever she is in her recovery is probaly where she stays.I find it very hard on myself as well I feel as though I'm greiving the loss of my sister,because she is no longer the big sister I had. I'm wondering if there is possabilty of more recovery after 1 yr.
 
 


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