Stroke Survivor - male
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About 2Fight

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  • Birthday November 15

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  1. Welcome to this board. I joined just 3 months ago. You will find very helpful people on this board because they are experiencing similar challenges in their daily lives. It is really difficult for people on the outside (even medical professionals) to truly understand post stroke disabilities because a lot of these issues are hidden. You will immediately relate as you will find survivors with similar issues. When you feel down and wanting to give up, there will be someone who experienced the same thing and offering support. There are useful and practical coping strategies that survivors can share from their own experience. For myself, almost 3 years ago, I had a ruptured cranial aneurysm which bleed right into the subarachnoid space between the cerebellum and brainstem. My NeuroSurgeon saved the right PICA territory of the cerebellum. Otherwise, I would have had full Wallenbergs Syndrome and severe Ataxia as the PICA territory of my cerebellum would have been completely destroyed. I survived but unfortunately, I stroked damaging vestibular cochlear nuclei in the brainstem so I still have issues with my vision, hearing, and balance. For my vision, the impairment is double vision and nystagmus which makes reading really challenging. But, I really like challenges. For my strategy, I went beyond the medical community and starting engaging with Neuroscientists and medical engineering community. Taking a daily journal on my recovery really helped. In the first year, it was difficult to accurately articulate my issues. With the journal, I can now explain symptoms so accurately that physician can't just dismiss it. It can be frustrating at times as recovery is not a linear process. It is zig zags all over the place. Celebrate the wins and give yourself a break in the valley. Hope the best in your recovery
  2. Tracy, With my double vision, I am prescribed prism glasses but I have eye strain all the time. It has been a struggle trying to come up with the best solution. I am coming up with my 3rd eye prescription in 2.5 years. Hopefully, I can find a pair of glasses that will feel comfortable. Do you have problems with your vision? Eye drops and putting a warm towel on my eyes are the remedy to dealing with sore eyes Best, Charles
  3. Last night, I watched a documentary on the Life and Work of Dr. Marion Diamond. She was one of the pioneers of Neuroscience and considered one of Giants of modern Neuroscience. She was a Professor at UC Berkeley and changed the view of Neuroscience in the area of brain plasticity in 1964. Prior to her study, it was thought that the brain was static and genetically imposed. In the 80s, she was the lead investigator in studying Einstein's Brain and found that his brain had unusual degree of Glia cells. Now, the study of glia cells is important part of Neuroscience research. The principles of Neuro-PT finds its roots in her work as Neuro-PT involves exercises to rewire damaged neural paths. She is in her 90s and she is still very sharp. The documentary was also really interesting in that Neuroscience starts with study of rats/mice. Currently, studies involve fMRI and other advanced imaging to study Neural paths but these Pioneers like Marion Diamond started with Mice. http://lunaproductions.com/marian-diamond/ http://iws.collin.edu/blusk/Krech and Rosenzweig .pdf This documentary was profound for me. She discusses many things like Diet, Enrichment, Brain Plasticity to continue to improve our cognitive and emotional well being. I find it compelling that most stroke rehabilitation and research roots are found in her ground breaking work. I will post more videos in relation to brain plasticity, diet, love, and glia which may be indirectly related to our issues but is more relevant from a way of life and mindset in our recovery.
  4. If you are screaming at a touch, you need the medication. If a health professional insinuate that you are "playing", then he/she should consider another profession. During my hospitalization, the head pain was not like a normal headache. It was the most agonizing head pain in my life for 7 weeks. I really needed the Morphine/Fentanyl regimen and Percocet after my discharge. With opioids, there is a danger of building a tolerance or weaning off for another medication or addiction in dependency. The health professional should be on top of it rather than insinuate "stigma" or "playing" That is BS.
  5. 4 legged furry babies are the best. They are better than 2 legged kind who are way too complicated. Dogs will love and support you on good days as well as bad. Here is my fox baby who is my companion. She is the best
  6. Everyday, I try to ignore but unfortunately, the imbalance/dizziness has returned for the past 3 weeks. It is different from vertigo. I noticed that the tinnitus and weird sound location issue becomes worse. It is like dominoes. When one sensory issue becomes a problem, other issues follow. It is exhausting. The worse is being in a crowded room. All the conversations gives me a brain wipe out. I cannot filter out the other conversations as background noise. It is like sensory overload. I have a plan to correct it but it is a lot of work to do the Neuro-PT. Sucks.
  7. Also, I am not sure whether you are a Veteran but I assume that VA Hospital are the experts in CPS. They probably treat a more of TBI patients than strokes but the aftermath of stroke and TBI may be similar. If you are not a Veteran, I wonder if VA Hospital can still be a resource. At least, they can refer you to a CPS Specialist in your area. I know the "boring uninterested look" that physicians give when they give up. If I was not a *beep* and pushed forward, I would be still stuck in bed.
  8. Scott, we share a lot of similar issues but I am not in your boat as I do not suffer from CPS. Like Becky, I recommend teaching hospitals. I want to share my story. I went to see a Headache Specialist at Stanford as a referral from my ENT for vertigo. The process to get an appointment is a little different. There is new patients coordinator who gathered my info and records. Then, it was reviewed. A brain fellow (a recent Resident) performed the evaluation under the supervision of Professor of Neurology. I actually preferred it as the brain fellow would be taught the latest Medical training. The drawback is that the I felt slightly like a subject in a classroom. Her treatment was partially effective in one of my symptoms but not the main issue. The beauty is that I am in the network of the other teaching physicians at Stanford and she referred me to the specialist who nailed the final diagnosis and treatment. The process took about 1.5 years. The other resource where I found a lot of answers are Medical Equipment Trade shows. During the initial days when I complained about double vision, blurry vision and jumpy objects, my Ophthalmologist did not offer any explanation other than questioning whether I take street drugs. I went to this public trade shows where they had eye tracking equipment. I saw my jumpy eyes on the screen as well as left eye skew deviation. Perhaps, there will be vendors who specializes in treating central pain.
  9. Dear SassyBetsy, I am praying for you and your family. I hope that God will bring your family together. I hope that your Grandson can overcome his disability. I hope that your daughter will come around after resolving her postpartum depression. My Grandparents were an important part of my life growing up. I learned a lot from them and continue to follow their advice to this day. Your Grandson needs her Grandma. In My Prayers, Charles
  10. My comments was off topic for this discussion so I removed them
  11. Hi

    Hi Clksoft, Welcome to this board. I am also recently joined this board. It has helped me tremendously. It is really hard in recovery on your own as folks do not have the context of "silent" disabilities like dizziness, blurry vision, anxiety and other forms of disability associated with a stroke not noticeable on the outside. Many survivors here on this board experience the same things so we are in this recovery together. You may also find recovery as a zig zag process. My issues arise from a ruptured aneurysm and the subsequent SAH in the space between cerebellum and brainstem resulting in a stroke. At 1.5 years, I finally was able to resolve imbalance/dizzyiness and could walk up stairs unaided. At 2.5 years, I was able to manage vertigo, nystagmus, and double vision reducing vertigo attacks from 80 to about 3 a day. But, in the last 2 weeks, the dizziness/imbalance returned so I have to start Neuro-PT and rigorous physical fitness program all over again. I learned that that it is not just a dysfunction of a specific area of the brain but pathway of multiple connections. When one domino falls, others follow. It sounds like your body has gotten through a lot with a significant weight loss so take your recovery slow. For your sleeping, your body is telling you that it needs sleep. (Neuroscientists are discovering the importance of Default Mode Network in the overall health of cognitive function). I found that my daily journal was really helpful in my recovery on what works and does not. Take care, Charles
  12. Tracy, I think that you found a future career in counseling. Your topics really strikes a cord in daily issues that we are having. It helps as we share our coping strategies. You really raise awareness as we are in it for the long haul. I hope that you are having a great day. Charles
  13. Last week, I attended a talk by a Professor of Neurology at UCSF for my survivor group regarding improving Memory and Cognitive Function. It started with a lot of memory improvement techniques and strategies like grouping and image recognition techniques. Then, he touched on your subject of completing tasks and staying focused. He used Facebook as an example where there is a lot of random stories where we flip through random subjects. We will read random subjects on FB, Twitter and Instagram. In our day to day life, if you do the same, things will happened randomly and unorganized which is not healthy for the cognitive mind. He mentioned that we improve our cognitive function in organization so completing one task at time is important. Multi-tasking actually degrades cognitive function based on recent studies. After the this talk, I decided that I need to start my own daily task list for things are organized. He also mentioned that there has been huge discoveries in Neuroscience in the last 2 years on Cognition and Memory. Things to improvement are Music, Rigorous Physical Exercise, and Cross Word puzzle. The most interesting reveal is the Default Mode Network. Studies reveled that the most cognitive function occurs during "Non-Think" or "Non-Activity" mode where our minds are at rest. So, I am going to add "Meditation" or "Calmness" to my daily routine.
  14. I know that this post is supposed to be a lighter side of stroke but this topic is really sensitive to me. When the aneurysm ruptured,I had a major seizure where my body went into shock . My heart went into A-fib, diabetic episode, and could not control the system that regulates sweat. My Neuro-Surgeon told me that it is one of leading causes of aneurysm death where you die from Sudden death. After calling 911, the ENT came to evaluate me. He accused me that I was a drunk and made me to "drunk" tests. I am a serious Whiskey collector and the ENT saw a bottle of Pappy Van Winkle by my bed. This bottle runs for about 1.5K-5K on the secondary market. I told him that I am not drunk and won't be getting drunk on this Bourbon as it is really rare and something not to get drunk on. I started to beg for him to take me to the hospital. It is like begging for your LIFE. He finally took to the hospital. They didn't even have the sirens on. He kept on telling me to shut up. He just need to take the stethoscope to listen to my heart to see that I had an irregular heart beat. When the ER took me, he just told them that I am dropping off a drunk. Thankfully, the Stroke nurse intervene and told the crew to have CT scan immediately. She yelled at the ENT and told him "do you smell alcohol on his breath". The CT scan revealed that I had Fischer Level 4 subarachnoid hemmoraghe in the space between the brain stem and cerebellum as a result of ruptured aneurysm. I really wanted to file a complaint with the ENT company but if there is another emergency, I was not sure whether the company would hold a grudge. BTW, I have almost 120 bottle collection of whiskey/bourbon but drinking responsibly is important. Otherwise, it will lead to alcoholism which is a disease.
  15. Congrats!!!! Have you thought about opening an Etsy store which is a site that sells DIY crafts and arts? This way, we can see your artwork and we can share it. I am sure that it is amazing. You can create while your Son can handle the shipping and handling. Your art is a way of conquering and overcoming your disability. Bravo!!!!!!