Mike in Maine
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  • Merry Christmas Mike. I think of all of you often. I sure do miss my dad. This monster got him two years ago on November 21st, 2015. But, I know he is no longer suffering. I have lots of beautiful memories. Hugs and love, Kim (Skipper)
    Ya Mike still fighting this basturd. I wonder about you often cuz you were so upset about you progression last time we talked. Hope things are leveled off for you.
    Shoot me a PM about details about things, and I will get back to you.
    GREAT TO HEAR FROM YOU!
    Hi Mike,
    Hope your Christmas went ok. Mine wasn't too bad even though I miss my dad terribly. I had to work on Christmas Eve. Well, I went in at midnite I should say and work until 6am on Christmas morning. I bought myself a Beagle a few weeks ago from our local humane society. I was going to wait until spring to get one but I went to their open house and my heart told me I needed the dog now. I hate when it's raining though and I try to walk him and it's like a lake outside. That part I hate. Otherwise, it's going good. Take care, Kim
    Hey Mike, I read in one of your posts that you had a problem with increased spasticity with Nuedexta? Can you tell me more about that? I think this drug is having the same effect on me.

    Deb
    Mike, my neuro hooks me up and sticks a needle in random places in this back room closet at just about every visit, and I almost thinks she disappointed, or disbelieving, when she doesn't get the results she is expecting. I say that, tongue in check, because she's an excellent compassionate doc, who only has mY best interest at heart, and cuts thru whatever red tap necessary to give me the care she can. That said, EMG's have been normal. But she ( neuro) suspects something. And not telling me. Just a matter of time.
    So, did you have a clue that you were converting to ALS?

    Thanks for having this difficult convo with me.

    Deb
    Mike,
    Thanks for your response, although I'm just now seeing it. I don't get any emails that I have an unread Visitor Message.

    My decline has been swift, and my neuro is concerned about my calf muscle atrophy, symmetry of symptoms, and emotional lability as being indicators of ALS. She's upping the space between appts from 6 to 4 months. In the mean time, I'm sitting here waiting for the other shoe to drop and trying to have a life in spite of that. Its not working out so well for me. Did you see your change of diagnosis coming, or did it take you by surprise?

    I had posted on the ALS forum the question "How many PALS were initially diagnosed with PLS?" I was surprised that no one responded. Do you think its rare to convert?

    Debbie
    Hi Mike, Debbie here.
    I understand from one of my posts that you were initially diagnosed with PLS, but it converted (my neurologists term) to ALS. I am so sorry. I see folks posts on the PLS forum, that whenever they start to feel sorry for themselves, they count their blessings that they have the "P" and not the "A". I have thought that myself. You might have thought that also. Then, for you, it changed. I can learn a lot from you about how to cope when bad turns to worse.
    I'm getting a sense that I may be heading down that same road. I have some questions about your journey, if you would be so kind as to comment. Let me know if you'd like to have a discussion here, or in a private message (however those work. Fairly new to this site.)

    Debbie
    Ha! So often that even logging I. To reply Took me three tries!!! It makes it very interesting in the classroom when I can't think of the word I want---I have a high functioning autistic kid who always jumps in with the word I'm looking for---I always try to play it off like I was purposefully waiting for someone else to com up with the word. Now it's a game!! At home my family has gotten quite adept at interpreting hand motions and me saying,"hamina, hamina" all the time. I also have to write EVERYTHING down that's new to me. My computer at work is basically covered in post it notes.
    Hello, I am a student from Boston area and have been worried about ALS for a bit now. I read some of your posts and was wondering if I could contact you privately to ask some questions regarding this.
    Hi Mike,
    Wow...you are spending a lot of time in the hospital for this! I went in for an afternoon surgery which took 3 hrs. and then stayed just overnight. The recovery is a bit rough, especially the abdominal incision. Have to be very careful bending and lifting. I need to wear a looser waist band because of it and at times it seems to protrude more than I expected. I am careful not to lean against my granite counter tops after I did that once and hit the pump. The pump has not helped with the spasticity in my hands (fist clenching) or my arms and back. As I sit here typing this, I should let you know that my doctor is scheduling a dye study very soon to see if there is a problem with the pump. In the last two months I have had a sudden increase in spasticity in my legs. So I supplement with my oral Baclofen. I had the pump increased by 7% last month but it took a week to notice a difference, and now the spasticity increased again.
    Mike - I live in Woodinville - eastside of Seattle. We've been here for 24 years. We moved here from our home state of Minnesota. I'm glad you are having the evaluation for the pump. It has worked out very well for me. At first I struggled to get the dosage to the optimal level, but the PLS was progressing at the same time. So my walking didn't really improve and I ended up going from using a cane to a walker just 2 months after surgery for the pump. But the best thing was going off the oral Baclofen. I was so wiped out from it and was still working full time. The pump took away that drug induced tired feeling. Looking forward to hearing your results, Mike. Best of luck to you. Also, I'm only 56 - not 57 like I posted below! :) Don't want to jump the gun on the age thing!
    Mike - I have read many of your posts and see that you are early in your retirement/disability as I am. I would like hear more about you and how you're doing. I was diagnosed 3 1/2 yrs. ago and just went out on disability about a year ago. I'm 57. Look forward to hearing from you. LouLou
    >Hope you're feeling better, hang in there Shipmate!

    Thanks, Mike -- you know us snipes are hard to keep down :)
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