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Frankie a reex

Home Members Frankie a reex
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@frankiereedsr

@amanda-sifford well things are looking favorably would really love to change that word but at this point I can only say favorable because my diagnoses isn’t 100% complete the doctors that did test on me while in the hospital for not being able to move arms 4 or 5 th time in hospital same symptoms no diagnosis yet they would just do what ever […] View
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  • Profile picture of Dagmar Munn

    Dagmar Munn posted an update 3 weeks, 1 day ago

    Sharing my latest post from my ALS and Wellness Blog: “How I Socked It to ALS” https://alsandwellness.blogspot.com/2022/07/how-i-socked-it-to-als.html

  • Profile picture of Amanda

    Amanda replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 3 weeks, 1 day ago

    Our forum members amaze me daily.  You all ask and answer some tough questions daily! I’m so proud that I am part of such a unique online community.  It’s a bitter sweet experience to be honest.  I’m sure you can all understand that sentiment. Carolyn, I cannot even begin to put into words how much I have learned from you. Grace to begin with. Th…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic How Your Moderators work Together, and with YOU! in the forum Living With ALS 3 weeks, 1 day ago

    Richard,

    Any time a post is deleted or edited, Dagmar and I consult each other and include the other on the response. The member is emailed and we explain why the post or comment was edited or deleted.  In our community standards it is very clear that comments are supposed to contribute to the discussion, and provide information or support. You…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 3 weeks, 2 days ago

    I’m currently recovering from having COVID. Ever since it first appeared in our lives I thought if only I followed all the guidelines, I could avoid it. But the variant that’s been circulating this summer seems to have found me.

    I’m fully vaxed and boosted so I believe that contributed to keeping my symptoms on the “mild” side and with my o…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic How Your Moderators work Together, and with YOU! in the forum Living With ALS 3 weeks, 3 days ago

    Richard, we do support differing opinions. However, I believe several of your recent replies were deleted because you were posting (repeatedly) long lists of links rather than participating in the topic’s discussion. Each time you posted the same list a private message was sent to you outlining the what and why they were deleted.

    Having ongoing…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic Passing away and respiratory in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 weeks, 3 days ago

    Shannon,

    ALS effects each person differently so the exact path and length of time each pALS has is difficult to determine. Do you know if your husband has a genetic mutation or if his ALS is sporadic?  How has his progression been so far? Has it been limb onset or bulbar? All of these factors play a part in helping you understand and prepare.  H…[Read more]

  • Profile picture of Amanda

    Amanda started the topic How Your Moderators work Together, and with YOU! in the forum Living With ALS 4 weeks ago

    Have you ever noticed that Dagmar and I occasionally have different opinions on a topic? Sometimes the difference is nothing more than two ideas that exist without really impacting the other idea. Other times we have opposing ideas, beliefs, or thoughts.
    One of the first “differences” I recall was about ALS Awareness month. I approached t…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn started the topic Summer colds and flu – Does your ALS make them worse or about the same? in the forum Living With ALS 4 weeks, 1 day ago

    Whenever I come down with a summer cold I’ve noticed my ALS has an effect on my symptoms. Pre-ALS, I had the usual chills, coughs, and sore muscles. Now, all those symptoms feel super amplified; especially affecting my swallowing and breathing. Thankfully, some Tylenol and a few days of bed rest do the trick.

    Have you noticed any changes in y…[Read more]

  • Profile picture of Amanda

    Amanda and Profile picture of SandySandy are now friends 4 weeks, 1 day ago

  • Profile picture of Amanda

    Amanda replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 1 month ago

    @Martin,
    How long does it typically take for a drug to be approved and then made available in Canada? I didn’t realize that the Canadian process was as long as the USA’s.
    Amanda

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago

    Patty, I agree that you can continue keeping your body moving with at-home sessions, rather than formally seeing a PT. But a PT or OT can give you guidance on what exercises to do.

    It’s not about “building up” muscles, it’s about maintaining the muscle strength you have now.

    Actually, the muscles won’t break down from overwork – – it is from…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago

    We look forward to your future check-ins letting us know how you are doing!

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago

    What a positive report on how PT has helped you through the years! Keep setting those goals…it’s what keeps us pALS looking forward.

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago

    Rebecca, I’m happy to read that you are continuing your PT sessions. I suggest you keep a focus on strengthening your core. Plus, breaking up your at-home exercise into short sessions throughout the day. That way, you can keep your energy up and not overtax your weak leg & foot. During my 1st yr with ALS I learned the importance of adapt, adapt,…[Read more]

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago

    That’s very helpful information John, about medicare access. Thanks for sharing it – – and, along with how your PT sessions have been helping. Keeping our ALS-bodies in alignment and moving, I believe, contributes to slowing down symptom progression.

  • Profile picture of Dagmar Munn

    Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago

    Suzanne, that’s good that you still do at-home stretches for your husband between the PT visits. So many pALS rely on only the weekly PT sessions for their movement. But bodies need to move every day – – whether we’re doing the movement, or someone is helping us do it.

    I know it takes a lot of your energy to help him stretch daily, but I’ll bet…[Read more]

  • Profile picture of Amanda

    Amanda started the topic Extreme Weather Preparedness, Are You Ready? in the forum ALS Awareness Month 1 month ago

    Depending on where you live, extreme weather or natural disasters can look very different and our responses are different too! Add in ALS, and being prepared takes forethought and action!
    Where do you live and what extreme weather do you need to be prepared for?
    What extra steps do you take to accommodate for having ALS? (Do you have medical…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 1 month ago

    Cynthia,
    I can “feel” so much anxiety, frustration and pain when I read your post. I’ve lost several family members to ALS; however, I can’t imagine watching your spouse or life partner suffering with ALS and then not having access to treatments that are in the trial phase. I understand that the government has a process for approving treatments…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago

    @John C.,

    That is great news and I think your post was well written! Staying cautiously optimistic is GREAT and I’ll take that kind of feedback from someone involved in the trials. The more I talk the the team at the ALS clinic for the Pre-fALS study I am in I get the same kind of feedback. They are also part of the Tofferson study although I did…[Read more]

  • Profile picture of Amanda

    Amanda replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 1 month, 1 week ago

    Iancu,

    You would probably have to have a doctor prescribe the medication.  You likely cannot purchase it across country lines.

    Perhaps there is someone on the forums from Canada who can provide you with more information.

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