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2Fight

Stroke Survivor - male
  • Content count

    152
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About 2Fight
 
 
  • Rank
    Mentor
  • Birthday November 15
 
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  • Stroke Network Email
    Yes
 
Shared Information
 
 
  • Stroke Anniversary (first stroke)
    04-24-2014
  • How did you find us?
    Google Search
 
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  • First Name
    Charles
  • State
    CA
  • Country
    United States
 
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  1. 2Fight

    What is the pricing for this system? I was at Abilities Expo (for the disabled). Neofect exhibitor demoed the Raphael Digital glove product. I think that it works similar to Saebo VR except you wear a glove so it will monitor your fine tuning of your hand movements. They also have a smart peg board. http://www.rapaelhome.com/us/smart-glove-2/ Hopefully, rehab centers will start to adopt these solutions as it does show clinical improvements for some stroke survivors.
  2. 2Fight

    Yes Tracy. Fortunately, UC Berkeley School of Optometry is the #1 Optometry school in the country. Unlike family vision optometry or regular optometry schools, they spent about 6 hours of evaluations for my reading prism glasses. It turns out that my other prism glasses had a pin hole effect making reading very difficult. With my new pair, it is a lot easier for me to read but I still get eye strain. I am thinking of getting non-prism reading glasses. Usually, it is specialized optometry clinics who administer vision therapy but I found them to be "rip off" clinics. In academic school of optometry, their pricing is much cheaper and there is PhD optometrist overviewing your case. Basically, with jumpy eyes, the left and right eye is not converging normally making reading difficult. The vision therapy is supposed to improve convergence through vision exercises. For contrast sensitivity, certain tints like yellow or brown make improvements. The last medical mystery is something that you and I have in common. We both see halos or star bursts from light sources at night. These issues usually manifests itself from a physical eye issue yet my lens/retinal/optic nerve are normal. It is the last medical mystery left. I am trying to make an appointment with a Vision Neuroscientist as I have no answers from the medical community. My stroke physicians just attributed my issues to brainstem infarct but it is still a mystery.
  3. 2Fight

    Kelli, it sounds like the special contact lenses is like an eye patch. Have you thought about getting glasses with a black plastic which will be like an eye patch as it is pain putting in contact lens each day? I tried to try to read with one eye but I always get a migraine and eye fatigue. I also have dry eyes. I heat up an eye pad compress on my eyes for 20 seconds which makes me tear as well as Refresh Optive eye drops. It does relieve my dry eyes and helps with the fatigue. In my case, at Year 3/4, I finally found the doctor who gave me diagnosis (doctor 9) and treatment which resolved my chronic vertigo. At year 4, I don't have treatment nor diagnosis but for sure, I am affected by contrast sensitivity in low light conditions after a consultation at academic Optometry school (doctor 10). They are advising using tints to improve my contrast sensitivity. BTW, did prism glasses contribute to eye strain? I am thinking of abandoning my reading prism glasses.
  4. 2Fight

    I had similar issues. Like the others, I have diagnosed with adnormal jerking of my eyes (torsional nystagmus) so it is difficult for me to focus on a static objects. These objects appear to move. It also makes it extremely difficult for me to read and have severe eye strain. However, I also had issues with far distances in low light conditions. Just like you, the Ophthalmologist will measure my eyes with the glasses and claim that my glasses would correct my vision to 20/20. They just attributed my poor vision under low light as high myopia (near sightedness). However, recently, I went to academic school of optometry. I was evaluated by Vision PhD and students. I scored horribly in contrast sensitivity acuity. What I explained to all my medical doctors is that it was like a switch that affected by vision right after my brainstem bleed. It is as though I am wearing sunglasses at night as everything looks dim and blurry. Try wearing yellow or brown tints to see if you get improvement. These tints improve contrast sensitivity. If so, ask your eye doctor for contrast sensitivity acuity test. (Smith-Kettlewell Institute Low Luminance Chart).
  5. 2Fight

    Hey Tracy, It has been a long time on this board for me. I am going to start vision therapy starting in January. As you mentioned, it is not covered by insurance. After being disappointed by 3 Optometrists, and 2 Neuro-Ophthalmologists, and 1 Ophthalmologists, I went to UC Berkeley School of Optometry. Unlike the medical community, the instructor (clinical vision PhD) and students will actually provide academic papers of the issue and provide academic reasons for the issue. I already have found several breakthroughs. I would check whether there is academic school of Optometry taught in TN. They will give you an intensive vision therapy which often cheaper than family vision centers who usually conduct vision therapy.
  6. 2Fight

    You sound like a very lovely person and I am sure that you will find a good partner. Having disability and social situation is a tricky business. By social, it is interacting with others (dating, resuming your career, family/friends, etc). It is tricky as "others" may not realize that you are disabled. I am in similar situation as I look normal in the outside but I was horribly dizzy (much improved now thanks to a miracle medicine), abnormal eye movements (like Kelli) and weird night time vision. So, disability was always on my mind. I found that there are a lot of social groups that you can join based on your interest. (Church groups, hiking clubs, literary groups, etc). This way, you can connect and make friends with similar interests. They will understand your disability and accept you who you are. In this environment, it makes it easier to date or just making new friends. In my case, disability definitely affected my confidence but my motto in 2018 is perseverance and resilience. BTW, I am very familiar with AVMs as I am a ruptured aneurym survivor. (VA/PICA rupture)
  7. 2Fight

    It is funny that you wrote this post as I tested with poor reading comprehension after my brain bleed. But, in my case, it is due to my jumpy eyes and double vision. Even though I have prism glasses, I am reading (like this screen) on a curved plane. And my eyes jump so it slows down reading. I was also surprised how poor that I tested. If I wear an eye patch, it makes it easier to read. I actually saw my measurements at the Neuro-Ophlmalogist where the physician is a researcher. I participated in a study where I read a paragraph and they have a high speed camera and tracking device to record my eye movements. The adnormal jerk reaction affects my reading. Another interesting thing is recall of watching movies. If I watch an old movie or TV show (pre-brain bleed), I pretty great recall of the movie. However, I have been watching Netflix's recent shows (post-brain bleed) like Daredevil or Star Wars Rogue One, it is like watching it for the first time. I have to watch the show several times.
  8. 2Fight

    What I found to be very useful is keeping a good journal. By Journal, it is very descriptive especially including how medication affecting me as well as keeping track of long term changes which is difficult to track on a daily basis. For all my issues, it has been primarily sensory (vision, vestibular, auditory, balance, touch) ; however to my amazement, there is a memory issue especially heavily dense story lines on TV series. I am surprised how much memory gap that I have after rewatching these shows 1 year after as though I am watching for the first time. Now, you bring an important measure in evaluating my cognition via math problems. I know that there are resources like Luminosity but I can also pull my Physics and Math books from the garage. So, my plan is to test myself at least 3 times a year to monitor whether any changes to cognition as well as memory tests. The key parameter is how to objectively self evaluate.
  9. Hi Linnie, you may want to ask your original Neurosurgeon on exactly what type of metal was used. MRI was introduced in the 80s and I think that you told me that your clipping was in the 90s so they should have known use Non-ferrous metal, not Ferrous metal (with Iron) . Usually, Non-ferrous (not Iron) is used. I believe that the typical clipping metal is platinum. My aneurysm rupture was not clipped but coiled. (platinum) Regulations may be different in Canada for MRI exam than the US which include non-ferrous metal. I don't know. The reason why I ask is based on your family history, routine examination are necessary if new aneurysms are present. Honestly, I worry for you. Please take care.
  10. Linnie, Do you know what kind of metal your clipping is?