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Bev

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@elliemae

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    Bev replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 7 months ago

    <p style=”text-align: left;”>I have an upwalker for sale in Ontario Canada.  Its made in California. I had to go across the border to pick it up. Not available in Canada. If interested text me 519-988-9111</p>

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    Bev replied to the topic Muse cells – Recognize damaged sites in the human body, for treating ALS in the forum Research Topics 2 years, 1 month ago

    Richard,
    No mention of human trials. But sounds promising!

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    Bev replied to the topic Do you have difficulty eating or drinking? in the forum Living With ALS 2 years, 8 months ago

    Hi Dagmar
    My speech therapist ordered this device for me to strengthen my lips and tongue. Has anyone tried this yet?

    https://www.google.com/url?sa=t&source=web&rct=j&url=https://getabilex.com/&ved=2ahUKEwjNqNaxi6fqAhUQc98KHRMKCM4QFjAAegQIBBAB&usg=AOvVaw1THG-1KuLIU-u5slpYg3tG&cshid=1593437642011

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

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    Bev replied to the topic The controversy surrounding Nurown – – A roundtable discussion in the forum Research Topics 3 years ago

    Hi all, intetesting topic. Im hopeful for approval by the fda for nurown. Due to the cost I doubt the insurers will cover. Thats too bad for all of us. As far as administration of the cells I hope they Brainstorm tests the delivery to the exact part of the brain using mri focused ultra sound. That may be more effective than injecting to the spinal…[Read more]

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    Bev replied to the topic can someone give advice? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 2 months ago

    Hi Mikael, like Susan they diagnosed me at first with spinal stenosis. PLS has many similar symptoms as ALS. I’ve had a leg brace to prevent hyper extension of my knee and an Ankle Foot orthotic. Now I’m trying a build up shoe on my shorter leg to make it easier for me to walk with a walker. Not much difference between the length of my legs but…[Read more]

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    Bev replied to the topic can someone give advice? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 2 months ago

    Hi Mikael,

    why do you suspect you have bulbar issues.

    My symptoms started with my right leg and hand. I noticed when I was slow writing and doing up buttons on my police.

    I got into a health kick with exercise and diet. I ate tilapia about 5 times a week and took fish oil capsules. I believe that caused an imbalance in my body with the mercury…[Read more]

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    Bev replied to the topic can someone give advice? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 2 months ago

    hi Mikael

    I have been diagnosed with PLS. Primary Lateral Sclerosis. my emgs are clear too for ALS. I have spasticity and poor balance so I fell and hit my head many times. now I’m non verbal for 6 years now.

    hope this helps.

    Bev

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    Bev replied to the topic MRI Guided Focused Ultrasounds Can Safely Open The Brain-Blood Barrier in ALS Patients in the forum Flash Briefings 3 years, 3 months ago

    why can’t neurown stem cells partner with this. delivers stem cells directly to the damaged areas

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    Bev replied to the topic NPt520-34 Was granted orphan drug status! in the forum Research Topics 3 years, 3 months ago

    <p style=”text-align: right;”>so many disease mimic the symptoms of ALS. I just had an emg after 10 years following symptoms and it still points to PLS. I lost my balance and fell numerous times and eventually lost my ability to speak. I had head trauma in 2 traumatic falls. Speech therapy failed and I’m not eligible for clinical trials because I…[Read more]

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    Bev replied to the topic Investigational (experimental) therapies in the forum Research Topics 3 years, 4 months ago

    Hi Dagmar,

    You didn’t mention MRI focused ultra sound trial for ALS at sunnybrook hospital in Toronto On Canada. They have proved they can open the blood brain barrier temporarily to deliver stem cells or drugs to the exact area of the brain. I’m hoping brain storm Therapeutics will use that method in their trials someday. I was diagnosed with…[Read more]

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    Bev replied to the topic cALS Roundtable Discussion: What do YOU Want to Know? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 3 years, 4 months ago

    <p style=”text-align: right;”>3</p>

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    Bev replied to the topic cALS Roundtable Discussion: What do YOU Want to Know? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 3 years, 4 months ago

    <p style=”text-align: center;”>4</p>

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    Bev replied to the topic Helpful Tools, Technology & Devices in the forum Mobility Aides, Assistive Technology and Medical Equipment 3 years, 11 months ago

    I dont know rollator that can work on sand. I got the upwalker and it goes on rough terrain. Although I’ve only used it and carpet and tile. It makes me walk upright instead of a stooped position. I also purchased a portable power wheelchair that folds up and can be put in the trunk of a car.  It weighs 50 lbs. Go to wheelchair.com to view it if…[Read more]

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    Amanda and Profile picture of BevBev are now friends 3 years, 11 months ago

  • Profile picture of Dagmar Munn

    Dagmar Munn and Profile picture of BevBev are now friends 3 years, 11 months ago

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    Bev replied to the topic What causes ALS in the forum Research Topics 3 years, 11 months ago

    I think head trauma and chemicals play a part. As well toxicity from eating fish from farms in Asia such as tilapia and some fish oil capsules. Researchers found species of bacteria and fungi living in the central nervous system of patients with ALS.  Anyone have any common bonds with eating too much fish and multiple head trauma throughout life?

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    Bev became a registered member 3 years, 11 months ago

    • Profile picture of Michael Morale
      Michael Morale replied 3 years, 11 months ago

      Hi Bev, my name is Michael Morale. I’m the Director of Multichannel Content for ALS News Today. I wanted to welcome you and thank you for joining our forum. We hope that you will take time to go through all of the open conversations that are actively in progress, and feel free to join in. We strive to bring you the information that you need to m…[Read more]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 3 years, 11 months ago

      Hello Bev, my name is Dagmar. I’m one of the forum co-moderators and wanted to welcome you and thank you for joining our forum! We hope you will take the time to go through all the open conversations that are in progress and feel free to join in. If you have any questions or concerns or even suggestions, just let us know, and we will do our best t…[Read more]

    • Profile picture of Amanda
      Amanda replied 3 years, 11 months ago

      Hello Bev and welcome to the ALS forum. I am Amanda, one of the co-moderators of the ALS forum. Have a look at the forum and discussions. You are welcomed post comments, ask questions and provide feedback. We are here to provide support and information. Please let us know if we can do anything to be helpful.

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