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Eric Jensen

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@jensen73

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    Eric Jensen replied to the topic Is non-familial ALS a genetic disease? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 weeks, 1 day ago

    https://www.alzforum.org/news/research-news/crispr-screen-pulls-down-fresh-targets-c9orf72-als

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    Eric Jensen replied to the topic Confused about progression of symptoms in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month, 2 weeks ago

    The test is abbreviated NFLC and is being used by the Mayo Clinic.

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    Eric Jensen replied to the topic Confused about progression of symptoms in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month, 2 weeks ago

    An EMG is a user subjective test. The experience of the neurologist/neuromuscular specialist is how it is subjective. I had an EMG done a month ago showing little issue. This month, when I went to Mayo, the experience of the provider found radicle denervation. Schedule another test. Get a second opinion. This is your life and you live your…[Read more]

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    Eric Jensen replied to the topic Traveling and ALS: Share Your Challenging (and Humorous) Moments in the forum Living With ALS 1 month, 3 weeks ago

    Visited a Georgia State park to see a waterfall. They said it is handicap assessable. Joke 1. Started up the incline in my PWC and was quickly going sideways and into a fence(luckily it was there). Joke 2. Back down the handicap assessable decline. Sideways. Joke 3. Pretty view where I was able to access lol.

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    Eric Jensen replied to the topic Why can’t I be involved in my care? in the forum Living With ALS 2 months, 1 week ago

    Thank you. They need to do just a day in our life, I agree. I wouldn’t wish this disease on anyone. I am glad that there are forums for us to vent our frustrations. Thank you for the idea to print them. Many times, the providers don’t want to hear me give scientific fact or an intellectual opinion. My first visit to the ALS department, the phy…[Read more]

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    Eric Jensen started the topic Why can’t I be involved in my care? in the forum Living With ALS 2 months, 2 weeks ago

    Every time I go to a medical provider visit, I feel like I have just been in a fight. I don’t need to be a medical professional to give input on my plan of care. I am one piece of the puzzle, in the differential diagnostic equation. I had a provider tell me, “stop researching on the internet…” Why wouldn’t I want to be informed? ***using NIH and N…[Read more]

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    Eric Jensen replied to the topic Stomach Bloating in the forum Living With ALS 2 months, 2 weeks ago

    Head looking down, is the best esophageal position. I make a tight lip seal and swallow.

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    Eric Jensen replied to the topic Stomach Bloating in the forum Living With ALS 2 months, 2 weeks ago

    Speech Therapist

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    Eric Jensen replied to the topic Stomach Bloating in the forum Living With ALS 2 months, 2 weeks ago

    My ST noticed that my lip seal and head positioning, were the cause of my bloating. Since I adjusted my eating and drinking, I have little bloating. I also eat smaller, more frequent meals.

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    Eric Jensen replied to the topic Burning Sensations in the forum Living With ALS 3 months, 2 weeks ago

    Gabapentin’s side effect of sedation, goes away. Max dose here is 2700mg, usually given at 900mg three times daily. It is a first-line neuropathic medication. Lyrica is the other option. Good luck. God bless.

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    Eric Jensen replied to the topic Newly diagnosed? What do you want to know right now? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 3 weeks ago

    What’s next? 😂. I’ve had a myriad of possible disease/conditions. Many of them are, “life adaptable,” but ALS has been the king of them.
    My wife and I thought there should be a database with, “how to go about opting for a peg tube or BiPap,” as examples.
    A list of support groups, locally, for pALS and caregivers.

    thanks

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    Eric Jensen replied to the topic Declining Fast in the forum Living With ALS 4 months ago

    I am “fitted,” soon and I will let you know. Thank you

  • Profile picture of Eric Jensen

    Eric Jensen started the topic Declining Fast in the forum Living With ALS 4 months ago

    3/22 I was walking without assistance. Today I made an appointment with a power chair provider. I get to pick my color. 😯 Great news is that I can work with Team Gleeson with the chair accessories. So FAST!

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    Eric Jensen replied to the topic Tired???? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 1 week ago

    Love it!!!! We definitely are twins. I mowed my neighbor’s property for years because he was sick. Now, I had to put my pride aside as my neighbors came together and mow my property and built me a ADA ramp. Love others!!!!

    eric-

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    Eric Jensen replied to the topic Social Death in the forum Living With ALS 4 months, 2 weeks ago

    Chris,

    Thank you for sharing your experiences. As believers, I am told to believe that people will fail me. I have and always had, “unknown expectations,” in concern to others and how they treat me. It is hard because we are human and want to be appreciated and given equal respect.

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    Eric Jensen and Profile picture of John M CJohn M C are now friends 4 months, 2 weeks ago

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    Eric Jensen started the topic Loss of all control in the forum Living With ALS 4 months, 3 weeks ago

    As a man, controlling my environment, has been a useful and powerful tool in my life. I believed that I could control certain things and that it was ok to do so.
    One of my first heated encounters, with my mother in law, she spurted out, “You are so controlling.” It was a shock. I didn’t think that what I did or the way I acted, effected other…[Read more]

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    Eric Jensen replied to the topic Social Death in the forum Living With ALS 5 months ago

    Heide,

    Thank you for sharing what you go through. I attend a, “large church.” The way my days go, because I do have a few muscle fibers left in my legs, lol, I may be using a walker in the morning but soon I can I longer walk because of weakness and exhaustion. I say all that to paint the picture. Some church people see me during my “be…[Read more]

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    Eric Jensen replied to the topic You're Not You in the forum ALS In The Media 5 months, 1 week ago

    I agree. I avoid them as well. I don’t need a reminder. Plus, it puts the, “what if’s,” in my head. Many of those what ifs won’t happen to me in any degree.

  • Profile picture of Eric Jensen

    Eric Jensen started the topic Social Death in the forum Living With ALS 5 months, 1 week ago

    Me, “pre-ALS,” is a 100% social animal. I would walk across the room to shake hands with someone I recognized. I would keep a conversation going for hours with one or many. I love how people interact with each other. I was great! I understand that people,  now knowing that my condition is terminal, forces them to face their own reality. I don’…[Read more]

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