Stroke Survivor - male
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About 2Fight

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  • Birthday November 15

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  1. My Late Father who was a pediatrician was old school and would contact Specialists so the parents would be at ease. It sounds like this Neurologist is from the same old school medicine. Great that you found a good team to address your issues.
  2. I think that it depends on the person's intent. If the person sincerely thought that a challenge would help you, then just chalk it up to a person who meant well but it is just does not work for you. If the person was being sarcastic, then the person is a douchebag. For myself, I am challenged everyday with dizziness and vertigo. So, I looked at Neuro Physical therapy like training for the Olympics. It is hard work because it makes you nauseous. So, if a person told me that I should train for Special Olympics, I would have taken it as encouragement. Also, there are strokes that effect executive, emotional and cognitive thinking so for those survivors, Special Olympics may be a place for them.
  3. I was on Lacmital to deal with chronic dizziness. It helped with the imbalance issues. The side effect is that it made me feel a little edgy which is a known side effect. The 2nd physician told me to ween off Lamtical and switched to Neurotin as my issue was central vestibular disorder. As I understand, Lacmital is anti-seizure medication but used for pain and mood disorders. It is great that you went to see a Neurologist who projects confidence. I hope that the treatment would give you relief.
  4. Scott, I also have over stimulation with sound especially if it is unorganized like crowded room noise. I have a damaged right ear from the stroke. My technique in controlling over stimulation is just putting an ear plug in the damaged ear. In this way, I can still enjoy social interaction rather than shutting down completely with ear plugs in both ears. With the bad ear, for sure, I am experiencing central auditory issues.
  5. What I understand from my Neurologist as well as Neuroscientists who work with EEG devices, it is very useful for TBI/Stroke survivors who suffers from seizures. EEG is very good in picking up electrical impulses at surface of the brain including the frontal cortex. But, it is not very good at picking up impulses in the center of the brain like brain stem. My friends uses EEG/Neuro for pre-seizure monitoring and finds it useful. If you are interested and what to find out more, go to medical devices/peripherals conference. They will have demos and you can speak with them directly. I demoed device from Emotiv on Music on the Brain using EEG. The data seemed really noisy and it was not very compelling. https://www.emotiv.com
  6. Your progress did not happen out of chance but progress happened due to all your determination and guts. Those exercises are not easy. It shows that you are a strong and resilient person. Congrats on your wins. Hope to hear more good news at your 2 year Anniversary.
  7. Tracy, Folks miss you hear as you are a mentor to many. Hope that the hurt heals and you can start you new life stronger than ever. Charles
  8. It is just the opposite. Research in Neurology and Neuroscience has taken huge strides in understanding the brain. As fMRI and 3D imaging continue to advance, in the last 10 years, they are unlocking a lot of mysteries at the research level. For my abnormal vestibular-ocular dysfunction, little was known just 12 years ago and physicians would shrug the shoulders and said sorry and I would not have any treatment. No PT exercises would solve this dysfunction for stroke in the vestibularcochlea nuclei. There will be more advances hopefully addressing strokes survivors. We have to thank these neuroscience pioneer. Before the the ground breaking research on brain plasticity, physicians would just say, I am sorry but nothing can be done without any hope.
  9. Umberto, Behind all of the blogs, research, neuro physical therapy involving brain plasticity employed today, it should be credited to Dr. Marian Diamond's groundbreaking research in brain plasticity published in 1964 at UC Berkeley. Prior to this paper, Neurologist believed that the brain is fixed so after a stroke, there is nothing can be done. Her basic premise involved mice. One group A of mice ran repetitive routine mazes and reward while the control group B were active in an unorganized activity. Then, she did a post morden on the mice and took a cross section of mice's brain. Comparing the cross section between group A and B, she found larger mass and chemical change with group A compared to group B. It basically means that with repetition, the brain changes = plasticity. There is a documentary about Dr. Marion Diamond called My Love Affair with the Brain. https://www.youtube.com/results?search_query=dr.+marian+diamond http://lunaproductions.com/marian-diamond/ http://education.jhu.edu/PD/newhorizons/Neurosciences/articles/Response of the Brain to Enrichment/ Flash forward to today's medicine. In a recent visit with my NeuroSurgeon and Neurologist, we discussed brain plasticity and my condition. Both physicians realized that I did understand some of the basic principles behind brain plasticity then we had real engaging discussion. While we talked about the positives with my Neuro-PT improvements , there are some deficits that probably will never return like my hearing loss or nystagmus. Unfortunately there are some stroke deficits that will never return. We also talked about plateau. As a lot of people on this board can attest, after 3 years, it is like hitting a plateau and no further improvements can be made through repetition. There is some disagreement in the Neurology community whether further improvements after hitting plateau. Also, unfortunately, these Neuro exercises and repetition will not address overacting Neurons firing too hard so I have to take Gabapentin to dampen it. For myself, knowledge is empowering. It seems strange but I am totally in tune with my brain with exactness and certainty. I know my limitation and maximize what works for me. This way, nothing can bring me down. Charles
  10. Hi Umberto, I am a couple years older than you are. I am familiar with VX and UX designer at my old work. You should check out SFMOMA which displays a lot of Jonathan Ive's designs on iPhone and Mac. I am also friends with a lot of visual development and production designers at the major Animation studios whom I collected their personal artwork. I am big fan of Syd Mead, Eyvind Earle, Maurice Noble After you feel you that you have mastered your PT exercises, I do recommend that you try to a simulated run at your place of work before returning to work. It means doing a complete day/week (taking transit, climbing stairs, high stimulation environments like crowds) and see how you handle it. In this way, you can test how ready you are to return to work. When I returned to work, it was challenging in a real world work environment especially doing a planning session for 100 engineers, product and design in a large auditorium. It was really difficult challenging for me as I was having vertigo, double vision and tinnitus. Also, I never welcome you to strokeboard.net There is a lot of great people who share similar issues. Charles
  11. Hi Ufusco, In California, short term disability is good for 1 year so long that you have sign off from your company. 75% of your salary for 6 months followed by 66% for the next 6 months. Under CA law, your job is protected for 6 months but after 6 months, your job is no longer protected. For stroke cases, usually the Neurologist signs off on the short term disability, not PCP and certainly not PT nor OT. In my case, I went on short term disability twice. In the first time, I challenged myself and went back to work after 4 months from my hospital discharge. My cognitive mind (memory, executive function, planning) was not affected so I went back to work due to my arrogance and false bravado. It is in a real world environment where my chronic dizziness (imbalance and vertigo) became a real disability. Also, a few years ago, Facebook started the open space work environment for increased collaboration. Most companies in the Valley adopted this work environment including mine. Unfortunately, this open space is really noisy especially crowd sound which is a real killer to stroke survivors as many people on this board can attest. Also, climbing the stairs at work would leave me exhausted due to dizziness. My symptoms were so bad that I had to go back on short term disability. The other challenge is "looking completely normal on the outside" but having all issues (imbalance, vision, hearing, vertigo) in the inside in my case. Co-workers just do not understand. In my case, it was kinda of hostile work environment where I experienced bullying. Or, you may experience folks treating you like walking on egg shells. I think that you mentioned that UX/UED designer (I may be mistaken). It requires a lot of collaboration between Engineering and Product and designs are developed organically. So, I recommend testing your stamina in real world conditions. I think visiting your company may be violation of short term disability. (My company instructed me not to visit until short term disability is ended) But, you can visit a friend in a similar work environment. I will PM later in the week. We do have some similar issues along the PICA ( posterior inferior cerebellar artery) territory. Charles
  12. When I was visiting me friend in CO, he told me that there is a kind of marijauna tourism blossoming. I do not know whether Out of State residents can buy legally as the law is constantly changing but my friend gave the impression that Out of State residents have been coming to the State as marijuana tourists. There are CBD edible products where almost no THC and therapy effects of CBD. I really do not know that whether there are any benefits of CBD to someone who suffered from a stroke. CO tourism may be just an option to consider. BTW, there is a beautiful ball park in downtown Denver as well as a lot a craft beer breweries.
  13. My acupuncturist explained to me that there are acupuncturist specifically trained and certified to treat stroke survivors dealing with spasticity. I get treatment for my "tinnitus" and "single sided hearing loss" and dizziness. To be honest, it did not make any improvement in these areas. However, the treatment is like "short cut" deep meditation. It puts me in this calm state. I was only able to achieve this once in deep mediation Yoga breathing class years ago. It gives me a point of reference if I am having an anxiety attack from my severe bouts of vertigo so I can quickly relax naturally. In Western Medicine, there is a lot of breakthrough in understanding the Default Mode Network (the brain at rest) and overall health of the cognitive function. In the future, I really hope that they study acupuncture and Yoga roles in the human brain using advance imaging technology like fMRI in a study. If you are looking for spasticity improvement through acupuncture, just make sure that they are trained for it. Also, a lot of insurance companies do cover acupuncture. If you are looking for improvement in anxiety and stress, it is incredible. A lot better than taking a valium.
  14. Ufusco, The high BP is not from the endovascular coiling for the rupture. My Neurosurgeon told me that with SAH bleeds, there have been cases of high BP. The medical community just does not know why. As you can already tell, your post really intrigue me as it was the exact territory as myself - VA-PICA -> Lateral Medula - PICA territory of the Cerebellum. My Neurologist mentioned Wallenberg's syndrome to me and mentioned that it is one of brainstem strokes that has good prognosis for recovery. He told me that it was discovered over 100 years ago. I found the description in my Grandfather's Medical Books published in 1920s. It is considered a rare disease. If you read case studies, it is exactly how you got it with a blocked small vessel. You mentioned that you are interested in changing your diet. A Neuroscience Professor friend of mine at Stanford forwarded this paper to me. His interest is stroke recovery at a bio molecular level with Omega 3 diet. https://www.ncbi.nlm.nih.gov/pubmed/25771800 To be honest, I only understand only parts of the paper. I just need to sit down with my friend when he has time. The other paper that you may be interested is this one. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4670869/ My Neurosurgeon strongly told me to exercise. These two papers are very recent. In the past 3-4 years, researchers are finding major finding in Neuroscience and Neurology. I am lucky that I live in the Bay Area with access to top Neurologist in the country from academic hospitals at Stanford and UCSF. It is frustrating for me that just a minor stroke in my brainstem still causes problems even after 3 years.
  15. Linnie, We are ruptured aneurysm survivors but I see your comment on your Sisters who did not make it. As I survivor, I am so sorry for your loss. At my recent charity Aneurysm support walk, half of walkers who raising awareness of love ones who passed away. Please take of yourself. Charles