Eric Jensen
Forum Replies Created
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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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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 physician said I was acting manic. I said, “when I was told I had a fatal disease,…, you would be anxious too.” He asked my wife, if she thought if I should go to the ER to be evaluated by psychiatry.
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Head looking down, is the best esophageal position. I make a tight lip seal and swallow.
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Speech Therapist
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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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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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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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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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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 intelligent provider, recognized that I had many neurological symptoms. Fast forward to today. I have a consultation with the director of my local ALS clinic. With these two wonderful providers in mind, I am a retired hospice nurse and have known that ALS is what I was presenting with. I learned to read my EMG, muscle biopsy, labs that correlate often with ALS, MRI’s and obviously how I feel. Shout out to the ones that listen and the ones that care, though, you have to find them first. Be your best advocate!!! Don’t let a provider tell you what they think is happening in your body. Be vigilant! Time, unfortunately, is not on our side. God is however.
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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. As far as the medical community, what I’ve found is that ALS is a non-qualified physician’s kryptonite. I understand. Liability alone in this world is scary to anyone. All but one of the providers that I saw said, “I don’t think you have ALS.” Good luck to you. Great topic!
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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 ligaments, thus causing my secondary pain. Ibuprofen helps me sometimes. Again, thanks for sharing. May tomorrow bring you joy and less pain.
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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 many things that appear on TikTok. Thank you for the advice on CBD. I know that there is many healing qualities that the marijuana plant provides. I am recovering drug addict and I try to avoid any opiates. Thank you for sharing your story. God bless you.
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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 normal. Fast forward to 3/2022. The weakness/atrophy/muscle cramps have spread to my LLE. I started to seek medical help. All providers, “I don’t think you have ALS.” Me, “great, then what is happening?” My new normal is that I will now need/rely on a wheelchair. Five months ago, i walked without my cane. As far as slow progression, whatever I have is fast. Too fast. My arms are now involved. I drop everything. I now get short of breath folding two towels. I’m scared and all I can do is “adapt,” and wait for my ALS Clinic appointment. Thank you for affirming your situation. I don’t feel alone. I wish you all the best. I will let you know what pain management says.
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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 to the kitchen for a meal, lol. Unfortunately, both legs are effected, as well as my arms, now. I see my local Neuromuscular doctor in a month. I pray that I get direction for my care. I have tried Mobic, Flexiril, Tizanidine and Tylenol to no avai. Ice works as long as it is cold. Voltaren gel works for 15 minutes but I can only put it on four times a day. I am a “lumbar fusion surgery will correct your foot drop,” person. Surprise, it didn’t. I was put on narcotic medications after surgery and I know that they work to “mask,” the underlying pain. I do not want to take them! I am seeing interventional pain management and hope for an option such as a cortisone injections. Thank you both soooo much for your responses.
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The test is abbreviated NFLC and is being used by the Mayo Clinic.
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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 symptoms daily. Be your best advocate! Good luck..
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I am “fitted,” soon and I will let you know. Thank you
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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 accessible ramp for my home. Love your neighbors.????
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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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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 “best,” right now physical state using a walker. Then, their friend may see me in the wheelchair at night. See the confusion, doubt, fear, etc. We are all human and mainly have the commonality of we want to be aceleres amd feel normal. We are all perfectly made. Thank you again.
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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.
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Thank you Carol