Recent content by MupstateNY

  1. M

    Access Unlimited Multi-Lift

    Is this still available?
  2. M

    CVS version of Allegra crushable?

    Thanks. Am I limited to the children's version? Or maybe there's a sustained release in a smaller dose and hence a smaller tablet?
  3. M

    CVS version of Allegra crushable?

    I haven't been able to figure out if the CVS version of Allegra is crushable. The label says: Active ingredint in each tablet: Fexofenadine 180 mg When I look with google, I see combination of Fexofenadine and Pseudoephedrine. But I don't see the pseudoephedrine listed on this package. If...
  4. M

    First visit to a Pulmonologist in a few days

    I don't think it's a cpap because google tells me it's bilevel.
  5. M

    Hospital bed in small room solution

    Great solution for the bottom sheet. Another possibility for the other part would be a comforter. I like the German kind that is not a lot wider than the bed. I hate having something heavy weighing on me in bed. One can cut down the US style comforter (wider) and comforter cover. Once the...
  6. M

    Day 1 of 2 first clinic visit

    Iscah, someone in one of my virtual support groups mentioned his pulmonologist, so I asked, and various people recommended that I start working with one. My first attempt was a dud (didn't know how to order any DME!). Second was great. She said that I would need a bipap sooner or later so she...
  7. M

    Progressing a bit faster than hoped for

    I can attest to Laurie's helpfulness in this area. Would it be helpful for you to request a telemed or ask some questions via the portal? Do you receive physical therapy? I was given a home routine involving some gentle squats, sideways walking, and foot movements, some with resistance. I...
  8. M

    Very painful after RIG

    Thanks, affected. My goal is to make it to my Eurogames club Tuesday evening. We'll see.
  9. M

    Wheelchair Maintenance is not an option

    Gosh, Mary, can you call the vendor and ask for a grace period?
  10. M

    Neck shoulder pain

    Thanks for the CBD oil info, KimT. Do I go to a store or buy from the internet? Amazon? Thanks for the warning, but the leg shaving made me laugh! I was born in 1955. I shaved my legs for at most a couple years in my teens and then people were burning bras and I stopped, haven't done it...
  11. M

    Blurred Vision

    I like the idea of a larger device. Do you like using a laptop? I had a friend with low vision. She taught me the trick of using better lighting when focusing is difficult. I'm not much of a cell phone person so I don't know if more light would be good or bad in the case of a phone.
  12. M

    ALS concern and confused about neuro thoughts

    Your doctors would be a good person to ask questions of regarding your health, medical testing, etc. You can ask the neurologist and your primary, who is the co-captain of Team Celine. (You're the other co-captain.) You could try the portal, make an appointment, or fax or mail a letter (hint...
  13. M

    Very painful after RIG

    And I finally pooped!
  14. M

    Neck shoulder pain

    KimT, I'm motivated to try what you said, rubbing with magnesium oil and taking CBD, as you suggested. I'm scared that leg cramps are going to interfere with gardening when it finally starts to warm up here. Also, I'm not sure how I'm going to get up from the kneeling position. I found...
  15. M

    Very painful after RIG

    Thanks, affected, I'll let you guys know how the phone mtg goes tomorrow. Today I'm going to have a shower!
  16. M

    Very painful after RIG

    Good news. Today I have markedly less pain when walking short distances around the house. Friday the stoma looked worse -- I didn't see the distinct yellow crescents anymore, it was oozing some yucky discharge that looked pirulent. Yesterday it looked better and today the skin around the...
  17. M

    Somebody Please Help Me

    Whether or not you have a serious condition, Derrick, you gotta be your best advocate. Ask your medical providers to explain anything you don't understand, and anything you're curious about. Jot down your questions ahead of time. Get to know your medical portal software. Consider going to...
  18. M

    Neck shoulder pain

    Best, do you know if there's an unscented version of Voltaren?
  19. M

    Miracle Berry for Relyvrio

    Not sure if chilling causes a problem, but I can say that temperature does affect the dissolving; one can chill after dissolving, and that won't make it undissolve. But I think one has to keep an eye on the time when chilling.
  20. M

    Pain and twitching

    I wonder if you could channel your concerns in a positive way, by reading about possible side effects of each medication you take/consider taking? You didn't mention treatment for the anxiety. I hope you are involved in therapy that's helpful for you, or will be getting started. I also hope...
  21. M

    Very painful after RIG

    I had heartburn during the COVID shutdown. I put on what for me was a lot of weight -- 15 extra pounds. It went away when I got my weight down. I haven't had it since then, until after the RIG. I think my spouse is going to get a photo of the advanced bipap settings now. Today I was the...
  22. M

    Very painful after RIG

    I like to wear the bandage under the disk because otherwise the disk irritates me. I've started changing it 2 or 3 times a day.
  23. M

    Very painful after RIG

    Sleeping is so difficult that adding the struggle with the bipap (it wants me to breathe more often than I want to) that I'm postponing a bit. But our resident settings expert is going to guide me with adjustments. Today I even had some heartburn when I got up -- that's a first. So I started...
  24. M

    Very painful after RIG

    I'm not getting much sleep, from heartburn and retching that doesn't bring anything up. Maybe I should stop eating at 3:30 or 4 pm for an 11 pm bedtime. Last night I made sure I was in a chair, not the bed, for three hours before turning out the light. This helped the night before, but last...
  25. M

    Very painful after RIG

    I'm lactose intolerant so never any dairy for me! Yesterday and today I've had the same pain level as two days ago. Last night I saw pink-red skin around my stoma. This morning it was a bit lighter in color but I broke out in my infamous rash, worse than usual. Called my primary's office...
  26. M

    A couple of resources

    Tomswife, I look forward to hearing what you guys think of palliative care. I want to get started soon if I can just get my head above water.
  27. M

    New member

    Poet, do you mean writing by hand or typing? I'm working on finding a keyboard that will help me type as my hand gets weaker. I have an inkless signature stamp arriving tomorrow. I want to get a power of atty for my spouse so he can sign for me in doctors' offices, because I have trouble with...
  28. M

    Neck shoulder pain

    KimT, you wrote: CBD oil and some topical Ketamine help with localized pain. Might this help with cramps at the back of my calves in certain positions? What about side effects?
  29. M

    Neck shoulder pain

    I wonder if you're straining a bit to see the screen well. If so, you could adjust the size of everything on the screen in Ease of Access. Also, is your screen lower than your eyes? I keep my monitor on top of my computer box (which lies sideways, minimizing the height) and this puts the...
  30. M

    BiPap questions

    I was finally able to connect with my RT, and she was very helpful. I've been trying to get a 10-foot heated tube since my tube doesn't reach well, given the limited space next to my bed (which we are hoping to resolve in the next few weeks). She explained that my delivered equipment includes...
  31. M

    Twitching

    To answer your question -- I don't think you need to be worried. This might be a good opportunity to work on your techniques for handling stress and anxiety. Most human beings can benefit from this! Also, it will be helpful for you as you get older. Best wishes.
  32. M

    Neck shoulder pain

    Maybe this is something a primary could help with. I've sometimes been told to take the ibuprofen around the clock to see maximum benefit. About 6 weeks ago, when I had shoulder pain when walking slowly around the block with my old hiking poles, my physical therapist checked my walking and...
  33. M

    BiPap questions

    Question: is Resmed Ibreeze okay? I'm thinking of switching to a DME supplier who has RTs on staff locally, but they can't get the Astral. The DME recommended by my pulm. NP has a long drive to come see me and that makes things difficult.
  34. M

    ALS diagnosis 12/21/22 wasn't a surprise.

    Oh, where do you place the thingies? I used to use TENS for back pain but then decided it wasn't really helping so discontinued.
  35. M

    Newly diagnosed

    How's it going so far for your brother? I find it annoyingly sweet so I sip water in between swallows. I'm in my 3rd cycle. I did look at the bar graphs on their website, looked encouraging. I have no idea if it's going to help me.
  36. M

    Very painful after RIG

    New thing, got heartburn and nausea around 10:45, had small serving of broiled salmon around 5. I think maybe it was too fatty for an evening meal. What do you all think are safe foods for a small evening meal in the early days with a feeding tube?
  37. M

    BiPap questions

    Thanks, everyone. I'm taking a break from the bipap while recovering from the RIG, will try again soon. I did feel better after my first try with it, Thursday night.
  38. M

    Very painful after RIG

    Thanks for everyone's good wishes. I called the Interventional Radiologist (IR) on call on the weekend and she said some IRs don't do the bag, but they do, so as to let the air out. (They push air into the stomach so they can see where to aim.) I just wish they had taught us how to empty the...
  39. M

    First visit to a Pulmonologist in a few days

    Wow, Tomswife. I guess I was totally unprepared for how hard this RIG would hit me. It's been scary -- given me a taste of what life will be like for me every day, a little farther down the line. Can someone explain to me step by step how the tests will guide management?
  40. M

    Foot drop and more EMG tests

    Sorry to hear it. I can personally relate to your dx journey. I hope you find this forum as helpful as I have. May I make some suggestions, for whenever you feel ready? (Please don't feel you need to even read this yet!) 1. Can you download the office notes from your provider's portal? If...
  41. M

    Seatbelt extender safe?

    Oh. My left hand is almost like it used to be, and with my right, it's weird, certain things I can still do, despite the tiny muscle left between my thumb and palm (thenar?). I will explain to my family and suggest some changes.
  42. M

    First visit to a Pulmonologist in a few days

    Not sure where to post this, tomswife, but my recent experience with two strong men helping me (no Hoyer lift yet) after RIG makes me think that maybe it's not safe for either you or Tom for you to caregive alone, given the size difference, your age, Tom's difficulties with communication, and...
  43. M

    Seatbelt extender safe?

    Oh. You mean steering? I've adopted routes that don't include stressful merging. Believe it or not, except in heavy winds, I'm still a better driver than my spouse. I think in March I'll be able to get transportation benefits and I'm looking forward to trying that out. Right now, our temps...
  44. M

    Blurred Vision

    I've had to increase my Windows 10 display to 125% a few weeks ago. I hope you're blinking a lot! Do you get any dryness? If so, there's an over-the-counter drop that helps with that. Let us know what happens, please. I'm trying to decide whether to see an eye specialist (once I have fewer...
  45. M

    What we've figured out about repositioning

    We figured out, dealing with my stomach pain from feeding tube insertion: When I slide down in the hospital bed: 1. flatten the head of the bed. 2. grab a wrinkle or edge of sheet on each side. 3. bend knees. 4. push feet down while pulling on the sheet edges, do this multiple times as needed...
  46. M

    Length of time between symptom onset and VA diagnosis

    I agree with rmt (except that I know a dr who does NOT tell you when she suspects MND, but she's the exception that proves the rule). I would also encourage you to apply for Medicaid and patient financial assistance with provider networks and hospitals. If you ever have trouble catching your...
  47. M

    ALS diagnosis 12/21/22 wasn't a surprise.

    That's great to hear. I don't really understand why I still get elbow pain from August surgery.
  48. M

    Newly diagnosed

    I don't understand why some of the g-tube formulas contain sugar. Thanks for the reassurance about the salmon. The salmon fat seems to be an oil, technically -- not solidifying at room temp. I've been buying the one from the Faroe Islands because that's the one that has skin on. I'm crazy...
  49. M

    New member

    Hello poet, I hope you find the forum as helpful as I do. I've learned to wipe myself with my nondominant hand but I can't get the hang of hand sewing or eating with my non-dominant hand. How about you?
  50. M

    Blurred Vision

    Some medications can cause blurred vision as a possible side effect.
  51. M

    Seatbelt extender safe?

    I don't get the pedals mixed up, and where I live, things are straightforward. I've lived in Wash., DC, and Long Island. I wouldn't drive in an environment like that.
  52. M

    Very painful after RIG

    Thanks, everyone. I did get some sleep. I took a Norco every 4 to 5 hours, staggered, so I always had 2 on board. The pain changed in the night. It would come in waves, very strong, until the Norco took effect. I'm not sure how much I absorbed, since the chicken consomé I drank occasionally...
  53. M

    Very painful after RIG

    "They sent you home without a prescription for pain medicine?" Yes, indeed they did. And the nurses rushed me out. I kept telling them how much it hurt. Now it hurts more. I was able to amble to the bathroom earlier but the second time, my spouse was freaking out, I couldn't get out of bed...
  54. M

    ALS diagnosis 12/21/22 wasn't a surprise.

    Sorry to meet you here, SteveO. I hope the forum is as helpful for you as it is for me. Sorry to hear about the weakness, etc. I had R ulnar release in late August and my elbow still hurts multiple times a day. What's your experience been?
  55. M

    Newly diagnosed

    Buglaw, I've thought about this. Since muscle is dense, we might find our clothes getting tighter as we are seeing smaller numbers on the scale. Micronutrients, I would guess, don't need to be present in large amounts, judging from the name. So I wouldn't worry about them pushing out the good...
  56. M

    Very painful after RIG

    Thanks! I'm going to wait until tomorrow. I don't want to remove the bag yet (they said 12 hrs after the procedure) because it seems like a good way to get the gas out. I have to take the bag off before eating. The nurse said waiting to eat would be a good idea. It's a good thing I had some...
  57. M

    Very painful after RIG

    We figured out how to drain the bag into a bucket. It still hurts a lot but I feel more upbeat and alert now that we did it. Nothing was able to flow into it because it was so full. We finally reached the IR doctor on call. She didn't know how to empty it. Then the nurse called back and...
  58. M

    Very painful after RIG

    Got my RIG today, have big pain left side of belly. This is where it hurts when I'm gassyl I'm afraid I made it worse by drinking apple juice at hosp.. Maybe constip is a factor? I'm supposed to wait 12 hrs after procedure before eatingl why is that?
  59. M

    Seatbelt extender safe?

    I'm confused whether it's safe to use a short, rigid seatbelt extender. I have trouble buckling and unbuckling. Sometimes I drive by myself. I don't get the pedals mixed up and I can turn my head well before changing lanes. I guess that when someone else is in the car with me, I should not...
  60. M

    BiPap questions

    My BiPap was delivered today. I want to breathe slower than the machine wants me to. Inhaling and exhaling get difficult toward the end. Can one get a longer hose? The space between my side of the bed and the wall is narrow-ish and this means that with the nightstand and then the BiPap, I...
  61. M

    Could this be ALS?

    How are: stress levels, anxiety, do you have tics? Also, have you looked at possible side effects from any meds you're on? Unfortunately we can't do much to help you figure this out.
  62. M

    Newly diagnosed

    Affected, that is shocking. Thanks for the warning. I think I know what a well-balanced diet is! A cooked green vegetable every day, something orange for vit. A from time to time, protein, some fats in moderation, some fruit, some carbs in moderation.
  63. M

    First visit to a Pulmonologist in a few days

    I warned you I didn't know what I was talking about! Thanks to the the knowledgeable folks, who pointed out that the list really isn't as overwhelming as I thought. Tomswife, have you thought about getting a palliative care provider involved in your new team? My primary explained to me...
  64. M

    Could this be ALS?

    Sometimes journaling is helpful. You seem to have good self-awareness, and that's what made me think that keeping a journal might be helpful for you. Best wishes.
  65. M

    Does this sound typical of ALS

    It sounds like you're a good planner. Could you meet with your primary, and a therapist, and plan out a course of action for how to manage the anxiety? Best wishes.
  66. M

    Suggestions for joy and fun at home?

    I'm feeling overwhelmed by the incredible number of portal messages, phone calls, and medical appointments that fill my days. I'm the PALS! But my spouse isn't good at that stuff. Also, he had a deadline yesterday for a project, and he left the work till the last minute. Maddening! So, I...
  67. M

    Newly diagnosed

    I'm getting a feeding tube in a couple days, and the Interventional Radiology department wants me to meet with a nutritionist. I've noticed that hospitals and ALS Centers seem to have a nutritionist on staff. Would that be helpful for you guys? Would it be helpful to have a telemed...
  68. M

    Slow or fast progression

    It varies! If you look at some of my content, you'll find plenty of complaints. I shopped around for a primary. I got a good one on my third try. Can you try switching offices? For me, a functioning portal is key. I hate getting an ear worm from an annoying, repetitive muzak loop.
  69. M

    Webinar on how to talk to children about ALS diagnosis

    Thank you, Nikki. I found it on their website. It says: Join us for this important program about when and how to discuss an ALS diagnosis with children, whether they are primary school age or adolescents. Dr. Basu will share with us her expertise in promoting healthy coping and resilience in...
  70. M

    Diagnosed in 2020

    Senna and extra magnesium are helpful for me for constipation.
  71. M

    First visit to a Pulmonologist in a few days

    Tomswife, I don't know anything about those tests, unfortunately. However, I'd like to share a tip. I've learned over the years (the hard way) to ask the provider to make me a flow chart, showing what the action step will be if Test A turns out to be in a certain range, then Test B, etc. I do...
  72. M

    Miracle Berry for Relyvrio

    Thanks, okbangel. I tried to look it up but struck out. Dislovag Power?
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