Eric Jensen

Jerry,
i, too, get joy from helping others, asking nothing in return. I am too weak to use a zero turn mower and we have 2.44 acres. When I rapidly starting loosing physical strength and endurance, my neighbors did mow my property and refused any form of payment. I had to put my pride aside. It is difficult. My neighbors also built a handicap…[Read more]

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.

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]

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.

Trust me I get frustration! But, a shout out to the specialists that do think outside the box. My dermatologist thought I may have discoid lupus(skin condition). He ordered a Rheumatological panel and bam. I’m off to Rheumatology. They found inflammation but very random, nothing definitive. My Rheumatologist PA, another very caring and i…[Read more]

Amanda. I am a SUPER ADVOCATE FOR MYSELF or also known as the follow up King. I have all my tests, labs, clinical notes, scans, referrals and anything else on my phone. I can fax, email, text or print all of these when I am at a provider’a office or on the road. I have found depending on the office to do these things, seriously delays my care. A…[Read more]

Angela. Thank you so much for sharing. I also believe that the mind plays an intricate part in the body’s pain. I have found that, “sleep hygiene,” (hate that descriptor) does effect my pain the following day. I have heard that meditation is a great modality as well. My atrophy has put tremendous strain on the supportive joints and ligam…[Read more]

Lisa,

Firstly, I am sorry that you are experiencing the pain. Secondary pain, seems to be an avoided topic of discussion because of it’s, “ALS exclusionary nature.” Treatment of the patient is not only the disease but, all of the myriad if symptoms that disease causes. “Dr. Google,” has tainted some aspects of medicine. My daughters believe m…[Read more]

ALS and Pain: Important Things to Know

Thank you Carol

John. My wife and I have read several studies, NIH(reputable), that involved unnecessary fusion/Laminectomy/carpal tunnel procedures, that were not the cause of the symptoms experienced. I believed, because I waited five months before proceeding with my fusion, that I had caused permanent nerve damage to my RLE. I had become “ok,” with my new nor…[Read more]

Thank you Carol and John! I used the, “find,” option here and there were no results found. What?!? As John said, my calf atrophy has created strain on my knees and ankles. I have been calling my, yet not effected muscle, accessory muscles. Those, “left over,” muscles work quadruple time to ambulate me. I sweat, as if I ran a marathon, when I walk…[Read more]