• Jennifer Zink posted an update 4 months ago

    @len Thanks for accepting my friend request! Are you a pALS too?

    • Hi Jennifer
      Yes, I too am a pALS. I was diagnosed in 2014 with PLS but it was upgraded to ALS a few years ago. I see you are a new member to this site – I think you will find it a good site for information and support. From your blog I see you have had quite a journey. Welcome.

      • Thank you for the hardy welcome, and for writing me back! Where are you on your ALS journey?

        • I am currently a wheelchair most of the day but can still walk a little with a walker and do transfers to a lift chair or to the shower. My legs are very strong yet but ability to walk is very compromised. I still can leg press 400 pounds with both legs which is good but down from being able to do that weight with one leg. I do need a lot of help from my PT to get into the machine. My arm strength is also very good but I do have fused bones in my left wrist from not being able to have surgery when it was needed. I have great difficulty speaking so I use a text to speech App to communicate when needed. My wife can still understand me some of the time. I do have difficulty swallowing sometimes with it going into my lungs but so far have recovered. I also have Lymphedema in my legs which requires two to four hour compression treatments to press the fluid out of my legs each day. So that’s my story and I am sticking with it!

          • So, your ALS started in your upper body? Mine started in my left foot. I can’t eat or speak because I’ve had a tracheostomy. I can’t move anything except my head. I’m able to “talk” to you because I have an EyeGaze computer. I really miss food, but I’m also very happy.

            • No, mine also started in my left foot. I still have very strong muscles they just don’t work for walking. ALS is such a quirky disease, no one ever knows what they will get. I feel for you not having the ability to eat normal food. Was the EyeGaze computer hard to learn? I’m guessing that you were very motivated to learn because your options were limited and it allowed you to engage the world. A voice always important no matter what form it takes!

            • It was difficult to learn at first, Now that I’ve mastered it, I keep myself entertained for many hours. I have my EyeGaze on from approximately 3-10pm. I write my blog, read a lot, answer emails, write, go on Facebook, and more! My husband died in 2018, and he left me taken care of. I had an EyeGaze before but it was hard without a stand. My computer I now have cost $17K. But it’s worth every penny!

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