About

I had a stroke.

Left partial anterior circulation stroke. May 2010.

It meant that the right side of my body was affected ­­­ – I veered to the right when walking. My mouth didn’t work right on the right side. My right arm didn’t have strength it used to. I couldn’t lift my right leg far enough to get my trousers on.

But you wouldn’t know it to look at me.

That’s where the big difference lies. Aphasia – it sounds like a C S Lewis character in The Chronicles of Narnia – but it means a condition where the stroke has affected the person’s ability to speak, read or write. You can’t see it.

A stroke is a designer affliction: every person is affected differently. I’ve got two of the three. I can read, but speaking and writing I’ve got to work on. Then there’s memory: I forget words. I like to refer to my life now as a crossword puzzle: some answers are apparent, some you have to search for.

This is ironic because I’ve spent my life talking and writing as a television news reporter, teacher of journalism and in public relations. I have some things left to do: finish my novel and resume my photography career.

I’ll detail the stroke experience, and the redoable effort in writing in this blog because I have now trained my right arm to do reasonable service on the keyboard and I know where to search.

This for Amoret, without whom I would be rudderless in a stormy sea. She has always loved me.

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12 responses to “About

  1. Hello!

    Thanks for writing this – I saw your Twitter posts and followed the link here. My daughter had a stroke when she was 18, she has aphasia but unfortunately she has problems with reading, writing and speaking now. English was her great love and she always had her nose in a book! Are you still having therapy?

    • I am still having speech therapy. https://redoable.wordpress.com/about/ this explains it all. I am writing about a year in delay…it took me almost a year to be able to write, although not as fast as I would like. This is possible through speech therapy (my gatekeeper and general angel Catherine is the reason).

      A friend mine, Dom Pardey, survivingastroke.blogspot.com had a devastating stroke and now relies on audio books. Have you tried those for your daughter?

      Thanks for your comments . I means a lot to be read appreciatively.

  2. If you are enjoying audio books are you aware of a charity called Calibre. They have a huge library of audio books and are predominantly set up to support visual problems. They also invite dyslexic people to join. Reading problems after stroke are acquired dyslexia. Calibre works much like love film where you create a wish list and they post you the audio disc. Google them and take a look! Jo therapy midlands

  3. “This is ironic because I’ve spent my life talking and writing….”

    I was [am] a psychotherapist who thought i was immune to life’s vagaries ’cause all I do all day is talk and listen. HA! Got me anyway! Over this decade, slowly, ever so slowly, I’m writing and thinking close to normal. The next phsae [see] … exactly…. …. …. It takes me hours to do 300 words when iused to do forensic reports ibn my sleep.

    paralysis, aphasia, wheelchair, partially blind, yada yada yada da!

    Sometimes I get so frustated i curse in fluent Madacasaian. [sic] [or how else could you know I was punning you].

    it sucks, kiddo!

    write to me. please!

    we’ll laugh ’til we cry.

    ita the only way i can cope.

    TD

  4. Thank you for sharing your story! It takes a lot of courage strength and perseverance! Be proud and never give up! Could you submit this under “share your story?” (How to post: login, under “share your story”, select “new topic” and start typing and/or copy and paste this link then let me to review it…once I approve it will it post)
    Please let me know if you have any suggestions, questions, or concerns!
    All the best,
    Jamie
    *my story (short version) on 10/13/06, I was rushed to the ER w/ intense stomach pains! Last I remember was taking pain killers. Over 2 weeks later, I woke up from a coma in the ICU- I was completely paralyzed – it took me over a month to even make a sound + i was still using a bed pan! Gross! -just so I can paint a picture for how severe +critical it was)
    So apparently the Drs had to remove 2/3 of my”Tangled” intestines (the cause of my pain) +when they lowered my blood pressure not enough oxygen got to my brain causing severe left side damage. I had a rare childhood condition which was fatal ,where my blood vessels were extremely narrow. Living into my 20’s w/out any symptoms, I never even thought to get checked or how u would prevent it..unless u got a MRI of ur brain?!! I didn’t even KNOW what moya moya was! a year later, I had MAjOR brain surgery to correct my condition 🙂
    Fast forward- 5 yrs later, I’m back to work(Part time), working out, maintaining a social life, rehab-ing, still staying POSITIVE, and trying to help others w a traumatic brain injuries! So please share w/ any1 who may benefit from my website: http://www.braininjuryco-op.com –a helpful resource for TBI-ers/care-givers– find supports groups, studies, activities share ur story, etc thank u in advance:)

  5. I understand crossword puzzle. Aphasia. It’s one of those words I want to take apart like “patiently,” but I won’t do it here on your blog. Thank you for visiting mine and leaving such kind words. I am deeply moved by your story and your courage and determination, and look forward to your writings. Susan

  6. Thanks for following my blog. I have my degree in Speech Pathology and I spent a couple of years working in rehab units. As I am getting older and my capacity to remember words, phrases and names has diminished it has prompted me to turn my education and experience on myself. I am not saying that I have aphasia, it is an entirely different experience for you. I am saying that I was privileged to have worked with those struggling with language disabilities, as it now aids me with my own aging and diminishing abilities.

    Thanks

    Bryan

  7. Thank you so much for sharing your experience! This blog is a great resource, especially for those dealing with stroke either in themselves– or one they love. Our blog audience would love to hear from you, if you think you’d like to write a guest blog post on our blog– http://rescuealertofca.com/blog
    Think about it, we’d love to have your experience and your input!

  8. Dear Louis de la Foret,

    My apologies for making contact via your comments box; I couldn’t find an email address for you.

    I am a Speech and Language Therapist doing a Masters project at City University London. I am contacting you because we wish to analyse your blog in our theses. The name of the project is Blog talk: the impact of aphasia on people’s lives.

    Please have a look at the information on this link:

    http://blogs.city.ac.uk/blogtalk/information-sheet-2/

    Please contact us to let us know if you want to take part, or don’t want to, on abbw446@city.ac.uk

    Many thanks,

    Victoria

  9. My name is Avi Golden. After you read the e-mail, I to talk or email to you.

    My cell phone to 917-656-0819, or email – agolden@pobox.com.

    Thanks!

    Avi Golden lives in New York City. In 1991 he entered college at Yeshiva University in New York majoring in psychology.

    A few years later, Avi traveled to Israel for two years to initiate studies in biology. While there, he also furthered his passion in emergency medicine by becoming certified as an Emergency Medical Technician (EMT). This choice was to dramatically shape his life later.

    Avi came back to the US to complete his Bachelor of Science in Biology at Towson University, in Maryland. By the time he graduated in 1998, he was well on his way to pursuing a career and a life that he loved. In the years that followed, he garnered even more credentials as an EMT.

    This allowed him to work as an emergency medical technician and paramedic in many different and exciting capacities. These included that of a Critical Care Paramedic, a Certified Flight Paramedic, a Rescue Technician, and in the allied roles of firefighter, hazmat (hazardous materials) operations and weapons of mass destruction technician. Life was good.

    In early June 2007, at 33 years of age, Avi was admitted to Columbia Hospital, in New York, for surgery on an arterioveinous malformation (AVM) that was discovered near the aortic valve in his heart. Like many people who go in the hospital for serious, but seemingly routine, surgery, Avi thought he’d be out and recovering in short order.

    However, that was not to be. During the surgery, Avi experienced a stroke on the left side of his brain, leaving him with right-sided paralysis, and profound aphasia, which proceeded to wreak havoc with his life.

    Avi remained in Columbia Hospital for two months and then was moved to a rehab hospital in the North Shore – Long Island Jewish Health System – for two more months of intensive in-patient rehabilitation. By early October, he was discharged, and began outpatient therapy at home (which he still receives for his arm and leg).

    During his stroke rehabilitation, Avi received “traditional” physical, occupational and speech therapies, but he also utilized a rich mix of non-traditional therapies that included acupuncture, massage, tai chi, yoga, constraint therapy, water therapy, computer games and special speech software. Avi also tried using a Neuromove™ device on his right side.

    Avi still has balance problems, and weakness on the right side of his body, but it’s his Expressive Aphasia that frustrates and confounds him more than any of his other post-stroke residuals. Avi can understand what people are saying to him and he can still read quite well.

    However, he continues to have a lot of trouble speaking and writing, both of these being reflect problems with expressing himself. This can be devastating for any friendly and outgoing person, let alone a certified paramedic who needs to communicate accurately and effectively to do his job.

    Avi refuses to let aphasia get in his way. He still works (and volunteers his time) as a paramedic and, more importantly, he’s embarked on a new mission of “aphasia advocacy,” educating others about aphasia and how it impacts a stroke survivor’s day-to-day life.

    To make this new goal a reality, Avi has been involved in a lot of aphasia-related projects. Like the myriad of activities in his pre-stroke life, he’s done so many things since his stroke that it’s impossible to list them all. Still, here are some of the things that Avi considers to be his greatest achievements:

    An article published about him for the Aug 13, 2010, edition of the “Jewish Standard” newspaper. The article, entitled “Got _______? Aphasia: At a Loss for Words,” was the featured cover story.

    From Nov 2008 through the present he’s been an active contributor to the “Aphasia Awareness Training for Emergency Responders Project,” for the National Aphasia Association.

    Assisted with outreach efforts to police, firefighters and EMTs in NY and NJ, by participating in their training sessions, and working on the creation of a curriculum, and materials, used in their training programs.

    In August of 2012, played the role of “Tevye” in a production of “Fiddler on the Roof” before an audience of 500 people at the Adler Aphasia Center in Maywood, NJ.

    Served as an Aphasia Consultant on two plays: 1) From May through June, 2009, for the production of “Night Sky,” in New York City, and 2) In September, 2010, for the production of “Wings.”

    Since 2009, has volunteered his time at the Adler Aphasia Center, where he participates in the educational training of medical residents, medical students and other health care professionals who are preparing for a career in a medical field.

    Avi says that his stroke hasn’t fundamentally changed him. He’s still the same sociable, affable, and compassionate person that he was before his stroke. He is eager to help others in need and devoted to his job as a paramedic. He has even more projects in mind for the future. For one thing, he would like to expand on his aphasia awareness efforts by becoming a “motivational speaker” to hospitalized patients in the North Shore – Long Island Jewish Hospital system.

    Since Avi is still able to enjoy two of his favorite sports, snowboarding and horseback riding, it’s no surprise that he would also like to start a not-for-profit organization (that he’s dubbed “NYC Outdoors Disability”). It would promote snowboarding, horseback riding, hiking, hand cycling, sailing, scuba diving and other outdoor activities for people with disabilities. Based on Avi’s “track record” so far, it’s a sure bet he’ll succeed with both goals.

    =================================

    picasaweb.google.com/avigolden

    Before that, I was a paramedic in North Shore – LIJ EMS and NY Presbyterian EMS in NYC. And I was going to go to medical school. As many of you know, I suffered a stroke several years ago and as a result now have aphasia.

    Their website, after the New York City Outdoor Disability:

    nycoutdoorsdisability.com

    [ http://goo.gl/j88N7 ] [ http://goo.gl/zhhXB ]

    I am a 39 year old stroke and aphasia survivor. I was a NYC paramedic and about to start medical school when I had a stroke. Prior to my stroke, I loved many different outdoor sports like horseback riding, kayaking, sailing, bicycle riding, snowboarding, etc. Now, post-stroke I have aphasia (difficulty communicating) and can’t use one arm, but I still enjoy many of the same thrilling activities. I want to help people with different disabilities (i.e. amputees, stroke survivors, people with MS and sensory impairments, etc…) in a group call NYC Outdoors Disability also experience exhilarating outdoor activities. Read more below!

    NYC Outdoors Disability
    We are dedicated to organizing fun trips for ourselves in the NYC area – expanding our horizons after becoming disabled. From easy nature walks to thrilling sports like rock climbing and scuba diving, these adventures include people with strokes, SCI, amputation, and sensory impairments, etc.

    We partner with various organizations to bring you outdoor activities, and adaptive equipment is available when needed. The sky’s the limit, so join us for some adventure, where you’ll find confidence, encouragement, excitement, inspiration, and joy through outdoor activities and sports.

    Come stretch your boundaries!

    Snowboard/skiing
    Scuba diving
    Kayaking
    Sailplane rides (Gliders)
    Sailing
    Hiking
    Horseback riding
    Rafting
    Rock Climbing
    NYC excursions……..

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