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Kim Belden

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@kimb

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  • Profile picture of Kim Belden

    Kim Belden replied to the topic Do you consider yourself a “hero” for living with ALS? How about a “survivor?” in the forum Living With ALS 1 month, 1 week ago

    Neither.  I’m just a sojourner.

  • Profile picture of Kim Belden

    Kim Belden replied to the topic What aspect of ALS has surprised you the most? in the forum Living With ALS 1 month, 2 weeks ago

    Carol,

    Be very careful.  PT made my pain worse even though I cautioned them on how to treat someone with ALS.  I recently went to an orthopedic for my knees.  Because of atrophy, my knees are in terrible pain.  I can still walk but they hurt so much.  I can no longer tolerate massage.  My inflammatory markers are very low but the MRI shows…[Read more]

  • Profile picture of Kim Belden

    Kim Belden replied to the topic What aspect of ALS has surprised you the most? in the forum Living With ALS 1 month, 2 weeks ago

    According to Mayo, ALS can affect nerve roots and that generates a host of sensory symptoms. I was a competitive athlete and also ran 5-10 miles a day. I had a very high pain threshold, but the pain I have now is nerve pain, along with pain from weak muscles not supporting my joints. I’ve had every test imaginable looking for a co-morbidity.  …[Read more]

  • Profile picture of Kim Belden

    Kim Belden replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 month, 2 weeks ago

    I’d also like to know what’s going on with Ji Wu Li.  I’m wondering if the drug companies are doing the same thing they did with medical cannabis.  They make a synthetic, less effective form, then make huge profits.

     

     

  • Profile picture of Kim Belden

    Kim Belden replied to the topic What Things Would You Do Differently If Diagnosed Today? in the forum Living With ALS 1 month, 3 weeks ago

    If I’d have know I’d survive this long, I would have taken my regular pension and not taken it in a lump sum.  That 2-5 years got me.

    I am alone.  I have no family so I had to do all my own research and fighting with LTD company.  Fortunately, I was full-time faculty at a college so I had six months paid sick leave and they let me stay on th…[Read more]

  • Profile picture of Kim Belden

    Kim Belden replied to the topic First Symptoms in the forum Living With ALS 1 month, 3 weeks ago

    My first symptoms were fasciculations on the bottom of my left foot.  Next, cramps in my left foot.  I just ignored them.  They went up my left leg, then jumped to the right foot.  It took about six months for me to start paying attention because I had no loss of strength.  I was diagnosed six months later.

  • Profile picture of Kim Belden

    Kim Belden replied to the topic What aspect of ALS has surprised you the most? in the forum Living With ALS 2 months ago

    How much pain I’m in and other PALS are in.  Not just cramps and spasticity but joint and muscle pain and weakened muscles causing ligaments and tendons to get tendonitis and tears.

    I’ve always been muscular and thin and I did gain weight per my doctor’s recommendation but I’ve never been above BMI of 24 and have stayed the same weight since…[Read more]

  • Profile picture of Kim Belden

    Kim Belden replied to the topic What useful tools or gifts have you found to be most helpful for someone who has ALS? in the forum Living With ALS 2 months, 2 weeks ago

    I think it depends on the stage and how much the PALS has progressed.

    When I was first diagnosed, I appreciated going out to dinners with friends and friends coming over to spend time with me.   I really didn’t get gifts from people but I would have loved certificates for massage, manicures, and pedicures and rides to doctors.  I would have lo…[Read more]

  • Profile picture of Kim Belden

    Kim Belden 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 2 months, 2 weeks ago

    I haven’t used my PWC much since I bought it.  It’s time for service and new batteries since I will be using it more.

    I called the company that sold it to me (Ability Medical Supply.). They said it would take 1-2 months to set up service and put in the new batteries.  I guess everyone needs two PWCs.  Fortunately, I can still walk and transfer so…[Read more]

  • Profile picture of Kim Belden

    Kim Belden posted a new activity comment 4 years, 1 month ago

    OK, Thanks.

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  • Profile picture of Amanda

    Amanda and Profile picture of Kim BeldenKim Belden are now friends 4 years, 2 months ago

  • Profile picture of Kim Belden

    Kim Belden replied to the topic To work, or not to work? How having ALS influenced your decision in the forum Living With ALS 4 years, 2 months ago

    I was a college professor for 25 years. I took my pension in a lump sum and “retired.” I’m busier now than when I was working. I moved, got a housemate, and found lots of new friends in my new condo. I had the remodel done before I needed it and that gives me a bit of comfort.

    I’ve written textbooks but now I devote more time to recreational…[Read more]

  • Profile picture of Kim Belden

    Kim Belden posted a new activity comment 4 years, 2 months ago

    Is it possible to upload Word or PDF files. I’ve created some documents that might be useful.

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    • Profile picture of Dagmar Munn
      Dagmar Munn replied 4 years, 1 month ago

      I’m checking for you 🙂

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 4 years, 1 month ago

      Hello Kim, you can add links to articles or websites you want to share, but uploading documents or PDFs is not allowed.

      • Profile picture of Kim Belden
        Kim Belden replied 4 years, 1 month ago

        OK, Thanks.

  • Profile picture of Kim Belden

    Kim Belden replied to the topic Going to the Dentist in the forum Living With ALS 4 years, 2 months ago

    Hi,
    I also wrote a handout for my dentist.

    I had to have two crowns replaced this past year. The first one was pretty hard. The one I had done last week was in front so it was easier. The dentist is also an MD and understood the challenges of ALS.

    I have a few other problems (neck and Meniere’s disease) where leaning back is not good.…[Read more]

  • Profile picture of Kim Belden

    Kim Belden replied to the topic Disaster Preparedness in the forum Living With ALS 4 years, 2 months ago

    I’ve had to evacuate Florida twice for hurricanes. First one I drove myself to Orlando. Second one a friend and I drove to Atlanta. Just can say my SUV was full and that was without any ALS equipment.

    I moved to a concrete and steel condo so it’ll have to be a bad one for me to go again.

    I have paperwork that I’m supposed to submit to the…[Read more]

  • Profile picture of Kim Belden

    Kim Belden became a registered member 4 years, 2 months ago

    • Profile picture of Amanda
      Amanda replied 4 years, 2 months ago

      Welcome Kim! I am Amanda, one of the forum co-moderators. Please take look at the forum subjects and feel free to post questions, comments and respond to other’s post. Let us know if we can do anything to make the forum a better resource for you! We truly hope that we can provide both information and support.

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 4 years, 2 months ago

      Hello Kim, 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 Kim Belden
        Kim Belden replied 4 years, 2 months ago

        Is it possible to upload Word or PDF files. I’ve created some documents that might be useful.

        • Profile picture of Dagmar Munn
          Dagmar Munn replied 4 years, 1 month ago

          I’m checking for you 🙂

        • Profile picture of Dagmar Munn
          Dagmar Munn replied 4 years, 1 month ago

          Hello Kim, you can add links to articles or websites you want to share, but uploading documents or PDFs is not allowed.

          • Profile picture of Kim Belden
            Kim Belden replied 4 years, 1 month ago

            OK, Thanks.

  • Profile picture of Dagmar Munn

    Dagmar Munn and Profile picture of Kim BeldenKim Belden are now friends 4 years, 2 months ago

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