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  1. Today
  2. DarrellF

    The first two neurologists looked at her for about 5 minutes and said they couldn't help and she would remain in this condition permanently. Our first visit with the new neurologist commented that Anne's walk was "spastic" and prescribed Bacoflen as a muscle relaxer and told us to come back in 3 months. We did finally get an MRI and we had a TELE-VISIT the other day with her (virus shutdown). She regurgitated what the MRI said and said that damage is causing her symptoms. duh! She recommended to continue therapy and that was it. I asked her about Micro Current Neuro Feedback (MCN) and she had never heard of it. I asked about Deep Brain Stimulation and she believed that would only help for Essential Tremor. I asked about Transcranial magnetic stimulation (TMS) and she said she would research it. Later that day I emailed her about the syndromes I posted, but don't expect to hear back from her soon. We have our next appoint in ... You guessed it. 3 months. I feel like we just keep kicking this can down the road because no one will invest the time into Anne. Maybe time and therapy are the only solutions. I just don't know and it frustrates me. Sorry for ranting.. Darrell
  3. DarrellF

    Thank you for sharing this. Darrell
  4. swilkinson

    Tracy, this virus is a scary one and I can see with all you are going through right now you feel you are not able to control your life which is also scary. Each of us probably have some of the feelings you do. I have just had the partial thyroid operation, developed a leaky blood vessel where the half removed used to be and had four days in hospital. I went to see the surgeon yesterday and he said it is nothing new and will resolve itself in 4-6 weeks. I am - whatever- rolling my eyes and shrugging my shoulders. I know you need a hug so am sending you one from the recommended social exclusion zone plus a few thousand sea miles. ((( Hug. ))).
  5. What can I say... So far 2020 has been earth shaking. Let me warn you before reading: these are my thoughts, my experiences, my worries and where I find my mind these days. This is not meant to add to the fear and chaos or to bring a negative light toward anyone. My words come from me and if you are sensitive to hearing someone's honest, transparent and straightforward thoughts then this may not be for you. I try to remember January. I don't remember what day I heard the news of a novel virus that shut down a large metropolitan city in China. I did ponder the fact but honestly not for long. I had been dealing with my own health issues and problems with illness (more than 1) that has been flaring my asthma. I think I have taken 3 steroid packs since the beginning of the year. In February, I began to hear more and more about the novel virus now known as the 2019 novel Corona virus and now more the more familiar (name and possible illness) Covid-19 and SARS-CoV-2. I started to see signs of other countries developing cases and watched the worry of everyone about the virus spread and travel (on planes and those who had been to China). I still didn't feel immanent fear but some time during February this started to affect me more. Then a F3 tornado slammed through Nashville. It was completely shocking and thankfully I now live about 45 minutes south. This tornado had torn through my old stomping grounds, within 1/4 mile from my previous home, ripping through the area I went to often for my groceries and many of the roads I took on a daily basis. I think maybe a week went by and then Nashville had its 1st case/s of Covid. Very close to home and where all of my Dr's are. On March 6th I went to my local walk in clinic because I knew I was sick. Flu test, strep test and exam. Tests are negative and I was sent home with a steroid pack and told to use my nebulizer 4x/day for my asthma. Not feeling better I went to my PCP on Monday the 9th. No truly bad symptoms so I was told to continue with my steroid pak and nebulizer treatments. 2 days later I am much worse, heavy persistent cough, headache, sore throat, fever, etc. My PCP said come in and I went to his office in Brentwood. I thought I was to see my Dr. but instead saw a NP who gave me another round of tests for flu and strep. This visit was different than usual... I was immediately isolated and given a mask and everyone that saw me was fully dressed with PPE. I was also given a virus panel test (not Covid test) and a chest x-ray. I was sent home with the same course of treatment and told to self quarantine until I was called with my results. A week later I was told I only had a regular cold virus but it would be best if I continued to self isolate due to being hi risk for serious illness if I developed Covid. So I hunkered down, stayed at home. Thankfully I had the where with all to go to Costco and Target for things I would need to not run out with. I actually got 1 of the last 4 Kirkland paper towels and the only toilet tissue left was a name brand (im cheap lol I use Kirkland), I got a 5 pack of Lysol wipes, eggs, milk, and a few other necessities. BTW Costco looked like a war zone. I just happened to get there about a day before all he** broke loose. I did find a large pack of toilet paper from Target. The next day every shelf in every store I went to was bare (necessities). I ran out of toilet paper yesterday thankfully I have a pack of baby wipes (don't flush these!). I did manage to get a large bag of Always descreet pads (totally am having leaks with every cough). The next week I am no better, my nebulizer is mostly not helping and now I have new symptoms a horrible taste in my mouth every time I cough and a cough headache that is sharply painful with pressure at each temple and across my entire head. I feel this acute pain with every cough and a general headache while not coughing. So I called my PCP office. At the same time my phone starts doing this weird thing of not ringing when the Dr. calls but going directly to voice mail. So for about a week of trying to contact someone, anyone I was losing and just getting sicker. Finally, today the nurse used a phone from another office to call me after I frantically had explained my issues sick and dumb phone to a very nice lady involved in deciding if you need a covid test. She and her colleagues had all agreed that it doesn't sound like I need a test but needed immediate attention for what I was going through and she contacted my Dr office with an urgent message. Seems like my neb med was not what I should have been using. She sent the stronger prescription today. Let's see how it goes. I've been watching the updates to this pandemic daily. I know I am "high risk" (asthma, high blood pressure, diabetes, and just that I have had a stroke). I sit and watch as stores close, schools close, supplies become scarce, other cities desperate for help and supplies. I feel like doom is coming and I have 0 ability to control it. I also watch political leaders in my own country (including the president) squabble and stumble to be the one with the "right" message for American citizens. My question is where do politics even fit into this reality. It sickens me and I do not feel positive or safe about any of their attempts to "lead". We are being told "We are all in this together" but I just don't feel it. I feel like the truth of this "thing" is teetering and could fall at any time and we have no idea what that means. So I am trying to rest and feel better, use my new neb med and watch all the Netflix, Amazon, Hulu, Disney+ and whatever else I can find to keep my mind busy. I'm looking forward to hopefully feeling better soon and feeling like doing projects around the house. I want to plan more "normal" activities and take this time at home to make improvements. To feel active, to be able to enjoy the birds at my bird feeder, watch flowers do their colorful dance and make projects happen around the house inside or out that I have been wanting to do for a while. I pray for everyone's safety and please take care of yourselves.
  6. HostTracy

    My stroke was bilateral cerebellar stroke in the PICA region so not a brainstem stroke. The brainstem and cerebellum are fed by the same posterior circulation (I believe that is correct). I have what is called Cerebellar Cognitive Affectice Syndrome (CCAS) for short.
  7. Yesterday
  8. DarrellF

    The Neurologist (our third one) hasn't been very helpful. All of them have indicated that there isn't anything that can be done either by surgery or medicine. Anne has two lesions, involving the midbrain tegmentum and right superior cerebellar hemisphere. I'm researching these syndromes hoping that there might be "treatments" for something specific. I'm not expecting a miracle cure, but something specific that might help, i.e. Deep Brain Stimulation, TMS, etc. I just feel like I'm not doing enough.
  9. ksmith

    well the first two have characteristics similar with my stroke. Mine was caused by a dissection in my vertibular artery ( chiropractic manipulation) that due to me bending my neck to the side, ( it was making me feel better for it was stopping the bleed) not knowing that was the side with the dissection, then straightened to be put in a cervical collar to go in ambulance those clots that formed from that then went into my post circulation system. Basically affected all parts of my brain through my brain stem. What has her neurologist said? Have you asked them to better assist with a plan or her rehabilitation therapist?
  10. ksmith

    You picked the best songs for your feelings.. loved reading this
  11. Welcome to StrokeNet. Please feel free to browse around and then introduce yourself by posting in the the Newbie Stroke Survivor or Stroke Caregiver Introduction forum.  After that, post your question in the applicable forum and others will reply.  You will quickly get to know the others. If you have any questions please don't hesitate to ask.

  12. Oh Pam...big hugs for you. You have sooo much going on, you are a champ. Yes, anniversaries make my brain turn to mush. I guess my only words are One day at a time, one hour at a time. You got this. We just don't have a deadline to aim for. All the best, lovely lady. ❤️
  13. Last week
  14. heathber

    Hi Darrell sorry not familiar with those ones but your best option is probably to find a neuropsychologist who will do a cognitive assessment and help you formulate a treatment plan and/or coping strategies neuropsych is very different to a psychiastrist or psycologist. They work with your neurologist and specialise in the cognitive impairments from brain injury. They are relatively easy to find here in Australia but I believe much less common in US. Good luck with it. -Heather
  15. Has anyone here been diagnosed with any specific "syndrome" pertaining to their stroke? I'm trying to get a more specific diagnoses to hopefully get a better plan for my wife Anne. I'm looking at these... Wallenberg syndrome https://en.wikipedia.org/wiki/Lateral_medullary_syndrome Benedikt syndrome, https://en.wikipedia.org/wiki/Benedikt_syndrome Claude's syndrome, https://en.wikipedia.org/wiki/Claude%27s_syndrome Just wondering if anyone here has heard of these or know anything about them. Thanks, Darrell
  16. SarahR

    I'm sure you both feel more comfortable with him at home.....and he likely is thrilled to be able to spend more time with you during this lockdown. I can't even imagine how fearful he is of this virus as I know Gary would have absolutely freaked out over it. I hope you are doing okay and taking care of yourself also. Sarah
  17. HostTracy

    Kevin you amaze me with your determination and positive scheduling! That hoop house is a work of art and love! Please keep sharing your progress... I very much enjoy your pictures. You and Deb are a great team! Keep up the riding so happy to hear of your improvements. You may not have the issue I do but I keep a journal and have blogged here as well. It helps me to see my true progress. 🙂
  18. HostTracy

    👍🏻👍🏻🎊🎉AWESOME!!! 🎉🎊👍🏻👍🏻 It was great to see you in chat earlier today! Hope to see you back soon!
  19. swilkinson

    Wish I had your hoop house set up, the seedlings look strong and ready to plant out. Your riding style should improve as you do more riding. You are doing well in your recovery which is what matters. Good for you!!!
  20. ksmith

    Hi Carlton, It was fantastic to meet you in chat yesterday. I think you're in the best place.
  21. Welcome to StrokeNet. Please feel free to browse around and then introduce yourself by posting in the the Newbie Stroke Survivor or Stroke Caregiver Introduction forum.  After that, post your question in the applicable forum and others will reply.  You will quickly get to know the others. If you have any questions please don't hesitate to ask.

  22. Welcome to StrokeNet. Please feel free to browse around and then introduce yourself by posting in the the Newbie Stroke Survivor or Stroke Caregiver Introduction forum.  After that, post your question in the applicable forum and others will reply.  You will quickly get to know the others. If you have any questions please don't hesitate to ask.

  23. Welcome to StrokeNet. Please feel free to browse around and then introduce yourself by posting in the the Newbie Stroke Survivor or Stroke Caregiver Introduction forum.  After that, post your question in the applicable forum and others will reply.  You will quickly get to know the others. If you have any questions please don't hesitate to ask.

  24. will2

    Hello, and welcome Carlton! I'm post stroke now 13yrs and still hanging in there. When I retired from my job shortly after stroking, I found I had plenty of time to sharpen my computer skills so enjoy the journey. Things to include your computer skills will improve along with your stroke recovery. I'm 68yrs old and this dog is still learning new tricks
  25. swilkinson

    Janelle, no words, just (((hugs))).
  26. KevRider

    Weather Break

    Finally a break in the weather ! After a hard winter here we seem to have entered spring. There's an ornamental pear tree that w use as a kid of indicator and its starting to bloom. Spring has high wind but they come later in the day. So there is a gap early morning where the sun is shining and temperature are above freezing so I got a few rides in. Seem the yoga and physio therapies have paid off! I am riding passably, doing best since my stoke. I still finding my posting trot rather bumpy as my muscle coordination is still a bit off so im not quite with the horses motion. Im much more in the saddle now but paying a price for all this in muscle aches later. I use these things to judge my recovery, like my left leg is becoming more effective, when I rode in the fall it was just along for the ride hanging there! After riding, the wind doesn't stop us working in the hoop house, so Deb and I have been doing lots of starts. Riding and gardening test my stamina which though improved I far from its pre-stroke level so by 2pm ( I get up like 4am) I crash in front of the TV wit a cup of tea. My exercise regime suffers wit my energy going else where but I don't worry about that as im active most of the light hours. Wed:treadmill Thu: day off Fri: treadmill Sat: Ride & gardening Sun: Ride & gardening Mon: Ride & gardening Tue: Ride & gardening Ave BP 151/86 weight 190
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