Recent content by Tomswife

  1. Tomswife

    New CALS - totally broken-hearted

    I agree with lgelb, Laurie. Tom and I had some heartbreaking sobs together, especially in the first few months. And we also laugh at this thief of a disease. When I cant understand him I say funny things. He smiles and laughs. One day I climbed into his twin size hospital bed , I'm coming...
  2. Tomswife

    My dads symptoms - sound familiar?

    Gastrointestinal issues are common with ALS but manifest themselves in different ways. I suggest you also see a specialist gastrointerologist.
  3. Tomswife

    My dads symptoms - sound familiar?

    Hi. Is your Dad on any other RX. And is he eating by mouth or fed via peg tube?
  4. Tomswife

    New CALS - totally broken-hearted

    Marnes. Forget the word or concept- normal. Your ALS world is unique to you and your PALS. With ALS we lose our touchstones. There may be a typical virus cold and how it runs its course, but not with ALS. You may have had unrealistic expectations of how you would move through this...
  5. Tomswife

    In Memory of Paul, my husband

    Mary. My heart goes out to you. I hope you are comforted by family and friends. You have been a strong, courageous, loving wife. Your selflessness and diligence has been inspiring. Hugs. I hold you and yours in my prayers. Kathy
  6. Tomswife

    Caregivers who come and go

    SeaGunny. We have two excellent PT people. Otherwise it has been a revolving door of new people who dont want part time. Tom is in the front of the house. They stay in his room. They are not permitted/ required to go anywhere else. They have all been very good at washing Tom. But the...
  7. Tomswife

    Hospice pros and cons

    SeaGunny. We hear you. Pillows, tissues, never comfortable, in pain and more. One of our big challenges is communication. I begged Tom to use text to speech apps. No. He has been using a scribble board. But now he can no longer scribble. I ask him many questions. He nods. More...
  8. Tomswife

    Caregivers who come and go

    Tom's oxygen is usually 93 or 94. The 79 drop was very scary not typical. Bipap brought it back up. It has dropped below 90 a few times. Then i exercise his legs and arms. We check it every 39 mins or so.
  9. Tomswife

    Is this the end?

    Do you have a relationship with one of the doctors, who you can talk to? I am thinking of you and Wayne and you are in my prayers. This is impossibly difficult.
  10. Tomswife

    CALS not ready for my close up

    There are many days i dont get to brush my teeth until bedtime. I have decided to brush them as soon as i get up now before tea. :)
  11. Tomswife

    Caregivers who come and go

    Kim. Thank you. Agree. I worked full time while going to college full time. One semester I took 6 courses and worked. Nuts. Then I worked my way through the MBA program at NYU. I think because I struggled so much, i want to help the kiddos. But i also agree that the focus must be on...
  12. Tomswife

    First visit to a Pulmonologist in a few days

    We have telehealth with pulmonologist weds march 1. I think when a Bipap is ordered the cough assist and suction device should also be ordered. But what do i know 🤔
  13. Tomswife

    Caregivers who come and go

    I have overnight caregiver mon thru fri now. We had to dismiss the weekend person because they fell asleep. The overnight caregiver calls me if he: is breathing oddly; coughing; or needs bedpan. I asked the caregiver yesterday to GO HOME! Just leave! She was not watching PALS (in another...
  14. Tomswife

    CALS not ready for my close up

    I wore my small hoop earrings for a week. Then one night I took them off and put them on the bed side table. I went to move them over to the dish on the dresser where I keep my casual jewelry. I noticed....they don't match. Not even close. Are you also finding you are not ready for a close...
  15. Tomswife

    Respiratory Onset

    I agree with others. You dont have symptoms of ALS, regardless of onset pattern. However anxiety may cause your symptoms and that is worth exploring with a doctor, but don't use the internet to diagnose this. Be well.
  16. Tomswife

    Caregivers who come and go

    We have been using a local agency since January 2023. Throughout January I increased the hours. We started with 3 days per week. 4 hours per day. Then 5 days. Then 7 days. Then I added overnights. Then I added more hours per day. I was tired. I needed help. And yet, I felt that I was...
  17. Tomswife

    Hospice pros and cons

    Sending hugs and blessings. You have always been his wife first even though you have felt like caregiver. Hold his hand and whisper sweet somethings to him.
  18. Tomswife

    Initial reaction to Relyvrio

    My PALS Tom was okay with Relyvrio for the first two weeks. Then the relentless diarrhea started. My husband has to go on the hoyer lift over a commode or bedpan, since he is bed ridden. We were doing this 5 to 7 times a day. The neurologist agreed, done with Relyvrio. The diarrhea was...
  19. Tomswife

    Blood sodium levels

    Members who are more knowledgeable than me will respond. It would be helpful to know what Rx medications your uncle is using. And, is he eating by mouth, not peg tube. With regard to co2 levels, how are they being measured. Has he seen a respiratory therapist or pulmonologist. We...
  20. Tomswife

    Riluzole and side effects

    My PALS, Tom, started Riluzole in August 2022 at the time of his dx. He has been declining each month. In February he was barely conscious, weak and drowsy all the time. I thought I would lose him fairly soon. I called the neurologist to discuss stopping the Riluzole. Are we getting only...
  21. Tomswife

    How do i correct after posting

    Yes!! There is a dot dot dot and that brings up edit or delete.
  22. Tomswife

    How do i correct after posting

    Hi. I am usually using my phone to post. I dont always notice typos or odd sentences before posting. Is there a way to edit a post? So you can edit a post. This is an edit.
  23. Tomswife

    G-tube adventures

    When we had a telehealth with our GI specialist he told usvto have a backup tube in case the tube is dislodged. He said it only takes a few hours fir the hole to close up. He said you must stick something in there. Yikes. I have not gotten the Backup tube yet. I assume i would boil...
  24. Tomswife

    Just another rant

    Poet1973. Blessings on your wedding anniversary. I would love to be held by my husband, but it has been months. When he used to be able to hold a weak stand I would have him lean on me. It was the closest to a hug we could get. This terrible disease has brought us closer out of a desperate...
  25. Tomswife

    Just another rant

    I have been surprised at how difficult the ALS journey can be. The diagnosis is elusive and takes many tests. We live in the NY Metro area, so we have options for Medical care for this complex disease. HOWEVER... - Experienced physicians may have some MND experience, but not indepth ALS. -...
  26. Tomswife

    Hospice pros and cons

    Daughter lives almost an hour away. She visits with her adorable children about 2 times per week. Ryder is 4 and evelyn is 1.5. The kids always bring a smile to our faces.
  27. Tomswife

    How physician services are billed under Hospice

    There is a thread under the Current Caregivers - Hospice Pros and Cons. This thread is about billing. Medical care is a business. If you are in Hospice care, the services are billed under original Medicare and paid 100 percent. You don't need to be end stage of a disease to use Hospice...
  28. Tomswife

    Hospice pros and cons

    My understanding...its all about billing. If PALS is in hospice it is 100 pct paid by original Medicare. Not billed through Aetna Medicare Advantage. If PALS needs physician services not related to ALS, then he can use those services billed through aetna medicare advantage. The care needs...
  29. Tomswife

    Hospice pros and cons

    Mary. You have a lot to think about and manage. So sorry.
  30. Tomswife

    Hospice pros and cons

    Mary. In my prayers. Hospice just didn't feel right. Especially when no one at hospice seems to know what you can and cant do. We will probably do it at some point, but not yet.
  31. Tomswife

    Hospice pros and cons

    My daughter and I met with the Hospice intake nurse. We have decided not ti use hospice at this time. We would lose our ability to use our specialists- neurologist, gastroenterologist, pulmonologist. It was also a confusing conversation because the nurse was telling us we can still use the...
  32. Tomswife

    First visit to a Pulmonologist in a few days

    Mary and MJT. Thinking of you. Tom listening to Grisham Boys of Biloxi. Now having his bed bath. Have not heard from GI Dr about the blood in the BM
  33. Tomswife

    First visit to a Pulmonologist in a few days

    I called the pulmonologist to discuss Tom's coughing for hours after removing the bipap. We did not reach any Eureka moments in the discussion. - something/mucous was disturbed by the bipap - the machine is on the lowest setting. - Tom does not have a cold/virus - try again for a shorter...
  34. Tomswife

    CALS Roll Call Continued

    Thank you. He does get yes and no confused. Maybe he meant another author. :)
  35. Tomswife

    CALS Roll Call Continued

    Affected. Tillie. I get frustrated and feel helpless communicating with Tom. He refused to use text to speech apps (we have 3 and I have demonstrated all). He writes on a scribble board. But his writing cannot be comprehended anymore. I ask 20 questions, first to get to context/topic. We...
  36. Tomswife

    CALS Roll Call Continued

    Had yet another conversation with Tom about hospice, to make sure he understands I wont be able to call Summit Health doctors unless I revoke hospice. Yes. Understands. I have been grieving for months, but now I cant even think straight. I went food shopping. I stood in an aisle staring at...
  37. Tomswife

    Hospice pros and cons

    Mary. Hugs. I spoke with a woman at CCALS who was caregiver for her husband PALS. She did feel like at some point she was more caregiver and less in the role of wife. Your post reminded me of when I sit down. If I sit, he calls me. I hope I am burning calories. His timing is flawless.
  38. Tomswife

    GI Bleed

    Mary. Sorry you went through this. Not highhacking your thread, but this AM TOM had blood in his BM. First time. I had switched him to aleeve that is an aspirin type med. I will switch him back to advil. We are also thinking possible hemeroids.
  39. Tomswife

    Hospice pros and cons

    The 24 x 7 care hospice provides is for emergencies and serious health issues. You would have someone to talk to and a nurse will come to the home if needed at that time.
  40. Tomswife

    Hospice pros and cons

    To clarify. Tom is late stage ALS. I will keep him home and he will stay home even with an emergency. He does not want to go to the hospital. Many tears have been shed. I have been having paid home health aides about 18 hours per day. I did that for February because I needed to regain...
  41. Tomswife

    First visit to a Pulmonologist in a few days

    Tom wore the bipap Saturday night for about 4.5 hours (10pm to 230pm). After I removed it, he coughed for about 3 hours. He had not been coughing. So we have to assume the bipap disturbed something. Needless to say, neither one of us got any rest. I talked to him about it and we agreed to...
  42. Tomswife

    Medicare and Electric Wheelchair

    Also. Another older article that may be helpful. How to Minimize/Avoid Denials: Understand which items will be subject to prior authorization. The list is located at federalregister dot gov Ensure sufficient documentation. Evidence must include information that the item complies with all...
  43. Tomswife

    Medicare and Electric Wheelchair

    I would think NSM knows how to write up the order so that it gets paid. This info below is not recent but you may see something here that is a clue into the reason for rejection. Medicarerights dot org Search for article: How do I get Medicare to cover a power wheelchair?
  44. Tomswife

    Suffering

    My husband, Tom, who is in late stage ALS, wrote recently on his scribble board...Suffering. Every day i ask him many times, Are you in pain? He usually says no. When I read the word Suffering, I knew he meant he was suffering emotionally. He is a man of faith, so I reached out to Church...
  45. Tomswife

    Timothy

    "So, my only solace at this point is knowing I was with him. It doesn’t help much, but it’s all I have." You were with him then. And all the days and months of ALS. And he was with you, grateful for your love and caring. His spirit is with you now. Peace.
  46. Tomswife

    Next stage of comments for Medicare seat elevation coverage

    Our Aetna medicare advantage rejected not only the seat elevation function, but also the attendant control. ATTENDANT CONTROL!!!
  47. Tomswife

    Bulbar ALS

    I have been thinking about vulnerability. Having stumbled upon the work of Brene Brown. There are many aspects of vulnerability that she teaches that may be applied to living with ALS. Some quotes I find helpful. "Vulnerability is not weakness, and the uncertainty, risk, and emotional...
  48. Tomswife

    Bulbar ALS

    Richter. Sorry you were ill and then had to retire before you had planned. Take time to reflect, look into volunteering, hobbies, sports, and walking. ALS is like a whack in the head. Unplanned retirement can feel like you woke up one morning and found yourself in a boat. Drifting...
  49. Tomswife

    First visit to a Pulmonologist in a few days

    I have the bipap on Tom. I watched 2 youtube videos on fitting the mask. It is a f&p vitera full face mask. He is doing fine. Listening to Trevor Noah's memoir Born a Crime. This is just a first try. Its 3pm here. Will have him wear it tonight. The night aide has completed her nursing ed...
  50. Tomswife

    First visit to a Pulmonologist in a few days

    Thank you Laurie and all. I will start with the bipap saturday night. Tonight. Friday. We are doing an overnight pulse oxmeter test that i will then send back to the lab in the am.
  51. Tomswife

    CALS Roll Call Continued

    Tom started coughing when i was putting water in the tube! Water water everywhere! Now i tell him "i am opening the valve. Dont cough!" Then i flush and close quickly. Ok cough.
  52. Tomswife

    First visit to a Pulmonologist in a few days

    I am sorry I dont understand the air we breathe and take for granted with each breath. How does wearing a Bipap increase the co2. Tom's bipap just arrived. I am afraid to use it.
  53. Tomswife

    Timothy

    So sorry for your loss and suffering. Kathy
  54. Tomswife

    First visit to a Pulmonologist in a few days

    Tom's arterial blood gas. They did not find carbon dioxide retention. Dr. Said it was unusual.
  55. Tomswife

    Interesting trial - Chinese medicine

    There is a scientific article that may also be of interest.
  56. Tomswife

    First visit to a Pulmonologist in a few days

    If Tom doesn't tolerate the mask is there another device that is not a mask that would provide comfort. Aide told me there is a non mask device. He doesn't want oxygen.
  57. Tomswife

    First visit to a Pulmonologist in a few days

    Good advice. I will make sure we can use the best equipment. Since they hospice all want $ I can just tell them its a deal breaker. The mdevice firm can support settings.
  58. Tomswife

    First visit to a Pulmonologist in a few days

    Yes. I was advised by palliative care team to just let device come. Because we probably have to use hospice device. And. We dont know if Tom will want device. My guess is he will try it but want it removed. A guess.
  59. Tomswife

    CALS Roll Call Continued

    Ha. Tom told me his butt hurts...he wrote it on the board. Just one word. Butt. I told him laughing that he is a pain in the butt. That made him laugh. I love to see him laugh.
  60. Tomswife

    First visit to a Pulmonologist in a few days

    Thanks! The mdevice firm is coming friday. It is interesting that there have been no discussions with us. I only know what was ordered because i called and asked. I will let them come and talk to them at that time. We do lose power.
  61. Tomswife

    You can keep PALS home, but it wont win decor awards

    Will run errand. I have never left more than 30 mins. It also depends on the aide. My m, w, f morning aide is very experienced. So i save my trips for those days. I always ask Tom if he needs to BM. If yes. We do that first. The aides will not work hoyer lift without me. I am in charge...
  62. Tomswife

    First visit to a Pulmonologist in a few days

    Hi. The pulmonologist has ordered a Resmed Air Curve 10. Is this a CPAP? Is this the right device for ALS bulbar and respiratory weakness? Thanks Kathy
  63. Tomswife

    You can keep PALS home, but it wont win decor awards

    I have heard that midsomer murders is good. Tom loves a good MM. :)
  64. Tomswife

    You can keep PALS home, but it wont win decor awards

    We live in a small three bedroom 1927 tudor colonial, that we have lovingly maintained over the 39 years we have lived here. Tom has always loved this old house. We renovated our very scary unfinished basement to put in a playroom for our grandchildren. That was the last home project Tom...
  65. Tomswife

    CALS Roll Call Continued

    Mary. I often feel like we are playing twenty questions. Are you in pain? About your body? Move? Urinal? Bedpan? Tv? He has a scribble board but it is difficult to read what he writes.
  66. Tomswife

    Progressing a bit faster than hoped for

    Brad. We are here to support you. It is a challenge to understand what is happening to your body , enjoy life each day, and also try to anticipate and prepare for the future. Keep reaching out and asking questions. Peace.
  67. Tomswife

    Multi-Chapter lawsuit against ALSA National

    There is a good summary of the unification of ALSA here: rinewstoday dot com als-association-chapters-throw-cold-water-on-national-move-to-take-them-over-seize-assets "The lawsuit, made public Monday, is backed by 14 of the 16 independent ALS Association affiliates that aren’t in the process...
  68. Tomswife

    Day 1 of 2 first clinic visit

    My husband was diagnosed August 2022 after speech and choking symptoms starting in March 2022. He has bulbar onset ALS. We learned that all ALS people progress differently. There are general stages of ALS , but how long PALS is in each stage is unique to that person. Try to live in the...
  69. Tomswife

    Hospital bed in small room solution

    This is so very cool! Excellent. We climb on the bed to get the sheets on it. :)
  70. Tomswife

    I'm losing my soulmate, life, love of my life, everything.....

    Rhondadale. Reach out any time for any reason. Ask questions. Under this caregiver topic you can start your own thread so we can follow how you and PALS are doing. Since my husband does not post I do post on his behalf in the general topics and other sections when I have a question that...
  71. Tomswife

    Hospice pros and cons

    I found this resource on Hospice care. The article is well written and comprehensive. It seems the big issue is that most hospice are for-profit. Just Google zaggocare dot org pros-cons-hospice-care "Although hospices were once run by nonprofit organizations, sadly, 70% of hospice...
  72. Tomswife

    Wheelchair Maintenance is not an option

    Tom went out in the loaner pwc today. It was 45 degrees but no wind. We got stuck on the street cause we did not know you cannot recline and also move in this chair. I suppose it is not considered safe. Google helped. Here is photo.
  73. Tomswife

    Very painful after RIG

    Mupstateny. We went through 4 days of stress about Tom's BMs. We finally had success. I was so happy. BM are important! :)
  74. Tomswife

    The selling of Jesus....

    Paul Salopek is a journalist. He is not the head of a religious institution. I don't even know what his religious affiliation is, if he has any. He has done so much good on his walk. I dont know why you lumped him into a list of televangelists. Whatever. Peace.
  75. Tomswife

    CALS Roll Call Continued

    They may have forgot about you. You should call.
  76. Tomswife

    The selling of Jesus....

    Al. If you are not familiar with Paul Salopek's walk around the earth, you will find it fascinating and good reading. Paul Salopek had been walking around the globe for many years now. You can learn more via national geographic. "Slow Down, Find Humanity Paul Salopek’s 24,000-mile odyssey...
  77. Tomswife

    CALS Roll Call Continued

    I think the rentals are for 13 months. Then you own. ;)
  78. Tomswife

    CALS Roll Call Continued

    Good to know. There is a lcsw that will guide us through the transition. I will make sure we understand bipap and get questions answered. If it becomes a concern, we wont use hospice. We want it for more care, not less. We may need cough assist later also. And. We can rescind hospice if...
  79. Tomswife

    CALS Roll Call Continued

    Dmb.. you are doing more than your best. I do find that some administrative people in medical offices lack empathy. Perhaps they are desensitized from dealing with sick people everyday. So sorry you had this stressful day. I once gave myself 45 mins just to get Tom in the car. Nope...
  80. Tomswife

    CALS Roll Call Continued

    Yes. We will not interrupt the PWC process.
  81. Tomswife

    CALS Roll Call Continued

    Tom and I met with the Summit Health Palliative care Doctor via telehealth. She does have ALS experience. She recommended Tom use a Bipap. So i notified the pulmonologist. And our discussion resulted in a decision to use Hospice services. Summit Health will recommend a Hospice provider.
  82. Tomswife

    The unknowability of God

    "Perhaps he has the final scenes of the short story “Revelation” in mind, but really the quote encapsulates so much of what haunts O’Connor’s world -- and thereby the American Catholic imagination writ large." Above is a quote from an interview with Bruce Springsteen. an article in Commonweal...
  83. Tomswife

    CALS Roll Call Continued

    His test results qualify him for bipap. We are talking to palliative care dr tomorrow to understand pros and cons of bipap at this point.
  84. Tomswife

    CALS Roll Call Continued

    Thank you. The very expensive PWC is still in work. Fully paid by insurance. What should I do? Cancel? We have the ALSA loaner.
  85. Tomswife

    CALS Roll Call Continued

    Tom is going off Riluzole. There is no benefit at this point. Only side effects, i suppose. Talking to palliative care dr tomorrow and will start investigating hospice. He is really weak and failing.
  86. Tomswife

    Interaction with nuedexta and albrioza/relyvrio

    Tom was on Nuedexta since November. Relyvrio started in December. After a few weeks he had terrible, frequent, watery diarrhea. He could not tolerate being hung from the hoyer 5 times a day or more. We discontinued Relyvrio per Dr advice. This is not related to your question. But we...
  87. Tomswife

    Wheelchair Maintenance is not an option

    Wheelchair Wacky story. We were very excited when the PWC loaner arrived about a month ago from ALSA NY. The man from NSM quickly showed me how the console works. One of the aides and I decided to see if we could use the attendant control to get the chair down the ramp, 3 turns. We got it...
  88. Tomswife

    Very painful after RIG

    There may always be a small amount of discharge at the site. I clean Tom's every day. There's always something. It is my understanding that this slight discharge is normal. Tom's PEG was placed Nov 23.
  89. Tomswife

    Lost

    Tom did well at hospital for tests. The aide and i rode in the wheelchair van with him. Hope to have results soon.
  90. Tomswife

    Lost

    Agree. There are times i use the heart, but i am not laughing.
  91. Tomswife

    A couple of resources

    We will be starting Palliative Care for Tom. PALS. I will look at this. Thank you.
  92. Tomswife

    LTC Recommendations/Thoughts/Alternatives

    Hugs and prayers for you and Timothy.
  93. Tomswife

    Multi-Chapter lawsuit against ALSA National

    Sorry. They were federated and are moving to what they call "unified ". I hope they will be transparent about how donations are utilized, and what rationale will they use to distribute and manage resources across the US? I know people who want to give locally. It sounds territorial...
  94. Tomswife

    Multi-Chapter lawsuit against ALSA National

    We have been helped in many important ways by the NY Chapter of ALSA. Everyone does not have the same experience with every ALS non-profit. But NY has been helpful and good to us. We also have a connection with CCALS and they have been very responsive. Where would we be without these...
  95. Tomswife

    Lost

    Mjt. If you have a dog or cat that adds to caregiver complexity. The 70 pound lab hound mix and very needy cat are in the back of the house....where the kitchen is and stairs down to laundry. That is why i dont give aides chores. They dont want to deal with the dog. And i dont want the dog...
  96. Tomswife

    Lost

    Mjt. You do need rest. I have someone at night 10pm to 6am. Tom needs the urinal about 3 times. If he needs to bm they are to call me. I was getting up during the night, 2. 3. 5 times and realized i needed sleep. I bought the CALLTOU wireless caregiver pager on Amazon. Tom has the...
  97. Tomswife

    The selling of Jesus....

    We live in the now and the not yet. The kingdom of God is not fully realized. A rabbi once said. Think of life on earth as a building with the scaffolding still in place. Gods work has begun, but it is not finished. Yes. There is terrible suffering. Many believers accept the mystery of...
  98. Tomswife

    CALS Roll Call Continued

    Tom is on Nudexta and PCP just ordered Lexapro, at our request. I dont want to second guess the Dr. but should we be concerned?
  99. Tomswife

    Very painful after RIG

    Think about what foods you ate before that did not upset your stomach. Perhaps you can make a veggie shake with protein powder.
  100. Tomswife

    CALS Roll Call Continued

    The PCP has ordered Lexapro. I talked to the neurologist today and he is concerned about oxygen and co2. I moved up the hospital pulmonary to weds (not Friday). I am supposed to beg the pulmonary dept to rush the report so pulmonologist can decide action thursday. I made or received 23...
  101. Tomswife

    Lost

    Arrangements for health care aides are not easy. My suggestions are: call some local churches or temples to see if they have people they can recommend. Our church keeps a list of people who are freelance and who may be available and also agencies that people liked. In NJ it is a very...
  102. Tomswife

    I'm losing my soulmate, life, love of my life, everything.....

    Nuts. I am so very sorry. Tom and I talked. I did fill out the POLST per his wishes, doctor signed. No intervention. If he is approved for a Bipap (testing Friday feb 10) i am not sure he will use it. He may refuse. I just have to live in the present. Lord have mercy.
  103. Tomswife

    Very painful after RIG

    Tom had PEG procedure. No pain or discomfort. Could walk right after. What does surgeon say about pain?
  104. Tomswife

    Very painful after RIG

    I hope you are feeling better. Thinking of you. Hugs.
  105. Tomswife

    CALS Roll Call Continued

    I am becoming...I dont know. I dont have words for how lost I feel. Tom does not relate to me as his wife and friend of 47 years. I am just the person who does things for him. He has a board he writes on. Urinal. Bedpan. Shirt is bunched. Back hurts. I have great compassion for him. My...
  106. Tomswife

    CALS Roll Call Continued

    Mary. I dont remember if we have a bipap holder on PWC. But they ask for most functions to see if insurance will pay.
  107. Tomswife

    CALS Roll Call Continued

    We lost power last week for 2 hours. The bed was at the correct angle so it was not critical. O keep the hoyer charged. But now we have an air mattress. I kept the foam mattress just in case we lose power. I will have to lift Tom and switch mattresses and put him back. If not storm related...
  108. Tomswife

    First visit to a Pulmonologist in a few days

    I hope if we get a bipap Tom's energy will improve. He sleeps all day. He has very little energy or interest.
  109. Tomswife

    First visit to a Pulmonologist in a few days

    Re sniff. I will call hospital radiology tomorrow Monday to see if i can get a 10am appt b4 the 11am pulmonary. If not i may postpone to see if it is essential. But... neurologist said to do it. Just concerned cause tom is weak. Mupstateny. With excessive experience i have actually...
  110. Tomswife

    New CALS - totally broken-hearted

    Are you planning a care team? My care for Tom changed rapidly over time. I am retired so i cared for him from dx till January 2023. Then started with part time help. Then increased the help each week this month. I now have someone at night. And most of the day. I am so sorry you are in...
  111. Tomswife

    Blurred Vision

    You may want to try eye drops ( not the recent recall though!). Retinal issues are halos around lights, floaters and flashers. Dry eyes can cause blurry vision. I use thera tears. Some meds have blurry vision as side effect. Good you are going to the opthomologist.
  112. Tomswife

    New member

    Poet1973. The CALS and PALS here will walk with you. The search function works very well and you can do keyword searches and find relevant discussions. How are you doing since your dx a year ago?
  113. Tomswife

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

    Thinking of you Steve. This is a knowledgeable and caring group to journey with.
  114. Tomswife

    Very painful after RIG

    So sorry you are in pain. I cant advise but i wish you well.
  115. Tomswife

    New CALS - totally broken-hearted

    As a CALS, I find being even on a low dose anti depressant helps greatly. There is no stigma. As a dr once said to me...there is no need to swim in sorrow when we have these amazing meds that actually work. If you are on the right rx for you, you wont feel different. Just better. And able to...
  116. Tomswife

    Losing our daughter

    Chris. You and your daughter and all of your loved ones are in our thoughts and we walk with you in spirit. Perhaps now is the time to care for your daughter full time. It would be less stressful for her daughters to make the shift now while their Mom is aware of them and happenings. And...
  117. Tomswife

    CALS Roll Call Continued

    Build up of co2. Sounds like the abg blood test is important.
  118. Tomswife

    CALS Roll Call Continued

    Tom smiled at me. Usually he has a vacant stare. Watches TV. Listens to an audio book. But does not relate to me at all, other than as his caregiver. As his caregiver he writes me notes on his scribble board. But he does not relate ti my otherwise. I get very lonely and I dont know how...
  119. Tomswife

    Saliva...101

    Thanks. I asked the pulmonologist but he either didn't understand the question...or didnt know the answer. I dont think he had als experience?
  120. Tomswife

    Saliva...101

    Secretions and mucous. I apologize for this clueless question. But what causes the issues with secretions and mucous? Tom does not have this symptom.
  121. Tomswife

    CALS Roll Call Continued

    I talked to non profit here that offers palliative and hospice care. We are at the palliative stage . I think the nurse will be helpful. We dont have a nurse now. Also filled out the very difficult POLST form. Defining Tom's future with boxes left checked and unchecked on a green form. :(
  122. Tomswife

    First visit to a Pulmonologist in a few days

    We have the appointment for feb 10. One of the tests is not done at pulmonary, it is radiology in a different building. I think the sniff. So. I have not scheduled that one.
  123. Tomswife

    CALS Roll Call Continued

    Mjt. Love the wedding. Mary. Thinking of you. My husband has a board he writes on. Instructions for me. I just wish that once he would write, i love you. Nope. Instructions.
  124. Tomswife

    Suggestions for joy and fun at home?

    Hi. So sorry you are both suffering with this diagnosis. There are people on this forum who have benefitted from eye gaze computer technology. On a nice day, you could encourage her to go out for a wheelchair stroll. The fresh air and nature would benefit. There are easy computer games-...
  125. Tomswife

    New CALS - totally broken-hearted

    I am so sorry. Your post is heartbreaking. Sometimes I feel like we are surrounded by people who are suffering. Hold and touch and kisd your guy. Its been months since Tom hugged me. Months since he told me he loves me. But I know that his love for me is there. And I hope he sees my love...
  126. Tomswife

    First visit to a Pulmonologist in a few days

    Tom is very weak. Going to the pulmonologist was very stressful. And these trips are not quick. Hospital is only 15 mins away. But wheelchair van arrival, ride, office visit. Back in the van, etc. I will talk to pulmonologist office. Thanks to all. You are wonderful.
  127. Tomswife

    First visit to a Pulmonologist in a few days

    Mary. I am concerned about Tom having this big day at the hospital. I will look into RT home visit. Perhaps that might be a good first step. The good news is that his lungs sounded clear.
  128. Tomswife

    The selling of Jesus....

    Clearwater... I struggled with faith for many years. I questioned everything. Studied theologies. Read Scripture Old and New. Wanted faith, and had nothing but doubt. And then...the Lord gave my searching soul rest in Jesus. Something happened to me and it is still happening. It is well...
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