After Surgery

Posted: November 8, 2013 in ALS Related
Tags: , ,

Hello everyone! It’s strange being online. I’ve taken a glance and been told I have had many well wishes.

I planned to stay offline while  focusing on recovery. I plan to still get back to everyone personally but right now I just want everyone to know I appreciate you very much.

I know the burning desire and even a feeling of desperation to know something new when a pALS has a new procedure. I do want to say to the ALS community that I feel very positive about my experience.

I’m still very focused on surgery recovery in general and that is going very well.

I will be back to blog more soon.

Again, thank you all for the messages.

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Comments
  1. Chris says:

    My wife ,43, has ALS too so I know firsthand what you and your family are going through. I’m anxious to hear how you’re doing after the stem cell procedure. Praying for you!!

    • I always hate learning of someone or their loved one having ALS. My heart sinks every time. We need to know nothing else about each other. We already know on a deep level so much. Being a little over 2 weeks after the procedure what I can say at this time is I’m healing great and I have nothing but positive feelings about the future of this procedure.

      • Meganne says:

        we are in this unhappy little club as well. my husband is 3 years diagnosed. did a years study of a drug at Mayo, what a roller coaster of emotions. I just discovered your journey and am very hopeful and excited for you…for us all

  2. Nataly says:

    My mom was diagnosed two months ago with bulbar onset ALS. Just two days after my 31st birthday. Life has forever changed. We have been desperately searching for all/any treatments with hope. I really look forward to hearing about how the stem cell surgery works out for you, we’ve been on the fence about looking into this option, yet like you, I feel this is the one with most hope. Please keep us abreast of any developments, it is extremely appreciated. Wishing you a successful outcome and speedy recovery from surgery. Thank you for sharing your story.

    • aprilals says:

      I am sorry about your Mother. I know with it only being such a short time since diagnosis, it’s still very raw. It is true, life is forever changed. I do think it’s great to search for anything you feel may hold hope. The word that gets me is desperately. I do know the feeling. I’m in no way suggesting you stop your vigilant search for the best way to move forward. I just hope you do take time to put it on the backburner and choose to live, talk and enjoy her company without ALS being the topic. My husband and I handled my ALS diagnosis very differently in the beginning. We chose to have days or evenings out and just those short times helped so much. I’m assuming that she is being treated at an ALS Multidisciplinary Clinic. You can see what trials they are offering that she may want to try. In case she isn’t being treated at an ALS center, or they haven’t met with you there yet, I highly recommend you contact the ALS Association (ALSA) and the Muscular Dystrophy Association (MDA). They have invaluable information and support to offer you. You can also go to clinicaltrials.gov and see what trials are available for ALS. Chances are you probably know all this, I just wanted to mention it just in case since the diagnosis is so new. I wish you and your Mother the best as you find your way on this journey. I will keep updating about mine. Take care, April.

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