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Owen

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@ownlife

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    Owen replied to the topic What do you think of this new form of Radicava? in the forum Research Topics 8 months, 1 week ago

    For me, Radicava falls into the same category as Riluzole- marginally beneficial. My wife has taken Riluzole basically since diagnosis, but decided against Radicava because the cons (needing a port, needing to have someone come to the house to do infusions daily for weeks) outweighed the pros (slowed progression by ~3 months). With a liquid form…[Read more]

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    Owen replied to the topic Leg jerks in the forum Living With ALS 2 years ago

    I would recommend talking to your doctor about trying Tizanidine (Zanaflex). My wife takes 4mg at bedtime, and another 4mg in the middle of the night when she wakes up to go to the bathroom. I would also look at either OTC sleeping pills (e.g. Aleve PM, melatonin), or prescription pills like Ambien- something to help him stay asleep even though…[Read more]

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    Owen replied to the topic Can Cannabis Help People with ALS? in the forum Research Topics 2 years, 3 months ago

    My wife uses weed butter (a high CBD/low THC flower infused into butter), and we’ve come to think of it as a medical necessity. The days she takes it versus the days she doesn’t are noticeable, and it greatly helps with her stiffness and spasticity

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    Owen replied to the topic What is the hardest thing being a Caregiver? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 2 years, 3 months ago

    The hardest part for me is that we’re young for ALS. My wife and I are both 39- so on top of seeing all your dreams crushed and dealing with the grief, I’m working full time, we have a 5 year old son, and now I’m a full time caregiver and paperwork jockey. I suppose we’re fortunate in a way that I can work from home, but there are definit…[Read more]

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      Amanda replied 2 years, 3 months ago

      Owen,
      You and your wife are very young for ALS. I know it can happen at age, but we don’t anticipate it until we are in our 50s or older. My cousin, Jessica, was in her early 40s and had just had her second child. Her symptoms started showing up when she was pregnant and the doctors assumed it was related to her pregnancy. After she had her…[Read more]

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    Owen replied to the topic HEALY Platform Trial in the forum Research Topics 2 years, 5 months ago

    I personally would choose the Healey platform trial if it’s available to you. I’m hoping my wife can get enrolled at our local site. It seems to have a few benefits: 1) the platform reviewed something like 40 possible options, and picked the most promising 4-5 to test, so you’re already starting from a more advanced position, 2) they will be…[Read more]

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    Owen replied to the topic Requesting tips for purchasing a mobility accessible vehicle in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 6 months ago

    We bought a used Dodge Caravan that had been converted already by Braun. It has the middle row removed, anchors in the floor for the chair, an automatic sliding door, and an automatic ramp that folds out. All in all a very simple, but practical and functional solution. We don’t have a lift, but a ramp seems much easier to me. I’m not sure what…[Read more]

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    Owen replied to the topic Ashwagandha (aka Withania Somnifera) Supplementation in the forum Research Topics 2 years, 6 months ago

    Here’s an ALS Untangled article you might want to read: https://www.tandfonline.com/doi/full/10.3109/21678421.2015.1088707

    It’s in regard to this supplement (https://www.lifevantage.com/us-en/shop/protandim-nrf2), which also contains Ashwagandha. It sounds pretty similar to your Dad’s supplement. It got a promising (and rare!) “A” rating on…[Read more]

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    Igor and Profile picture of OwenOwen are now friends 2 years, 7 months ago

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    Owen replied to the topic A fast way to win ALS not totally but … (part 2) in the forum Research Topics 2 years, 7 months ago

    Hi Igor,

    You might try contacting the ALS Therapy Development Institute. They have a form you can fill out, but I also spoke with Dileep there (contact info below), who could help put you in touch with the right people. I think the problem you’re going to face is that most organizations either a) rely on grant money for specific investigations,…[Read more]

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    Owen replied to the topic Why ALS patients shouldn’t wait for fast appeared drug and therapies? in the forum Research Topics 2 years, 7 months ago

    Here’s my thought on this subject. From what I’ve read, and what my wife’s doctor at Johns Hopkins said, mouse models are really of minimal use. I think they’re typically used to justify moving on the human trials, but they’re of such little use that it’s an unnecessary delay more than anything else. We still know so little about ALS, but we know…[Read more]

  • Profile picture of Danielle Uskovic

    Danielle Uskovic and Profile picture of OwenOwen are now friends 2 years, 7 months ago

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    Owen replied to the topic CNM-AU8 Trial in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 7 months ago

    Hi Danielle- My first and main question is, have you noticed any improvement?

  • Profile picture of Owen

    Owen replied to the topic Financial resources for home modifications in the forum Living With ALS 2 years, 8 months ago

    Thanks Chuck! Anyone have any experience with any of the orgs listed here? https://iamals.org/encyclopedia-of-als-organizations/

  • Profile picture of Owen

    Owen started the topic Financial resources for home modifications in the forum Living With ALS 2 years, 8 months ago

    Hi all- We’re getting to the point in my wife’s condition where we’re starting to prepare for her life in a wheelchair. A big part of that is going to be making some modifications to our home (primarily access into the house, and changing the layout somewhat of our lower floor). We’ve found a few good contractors, have received some quotes,…[Read more]

  • Profile picture of Amanda

    Amanda and Profile picture of OwenOwen are now friends 2 years, 8 months ago

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    Owen replied to the topic CNM-AU8 Trial in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 9 months ago

    Thanks Jonathan- that definitely helped! I never knew you could expand the contacts list in the studies. Fingers crossed the trial is able to start soon!

  • Profile picture of Owen

    Owen replied to the topic CNM-AU8 Trial in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 9 months ago

    Jonathan- could you explain what you mean by “virtually standing in line?” I haven’t seen a link anywhere to register or otherwise get in line. We’re in DC, and close to UMD and JHU, both of which will be participating in the platform trial too.

  • Profile picture of Owen

    Owen replied to the topic CNM-AU8 Trial in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 9 months ago

    Where is the trial taking place, and who contacted you about participating? My wife is still early in her progression, so it would be great to get her involved with any studies taking place.

  • Profile picture of Kathryn F. Kennedy

    Kathryn F. Kennedy and Profile picture of OwenOwen are now friends 2 years, 10 months ago

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    Owen replied to the topic Ibudilast (Ketas) in the forum Research Topics 2 years, 11 months ago

    Hi all- I’d be interested in hearing an update on whether or not Ibudilast has helped at all. The Phase 3 trail has been pending for a while now.

    I’d also be interested in hearing if anyone knows the dose and ratio AMX 0035 used between TUDCA and <span class=”st”>sodium phenylbutyrate</span> (i.e. how many mg of TUDCA, how many mg of sod phenyl),…[Read more]

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