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    . Tom Cat sent this yesterday:

    A cool day. Started out at 42, got up to 50, but cool on the water in Joe's pontoon boat. Caught this small bass an hour ago. Take care.


    And today:

    Yes, the floating dock is no place to be if your equilibrium isn't good. I know Ann would have trouble dealing with it. Other than if I'm half asleep at night, my equilibrium is okay. I can still stand on one foot at a time for 30 seconds or so. A couple of years back I could do it for well over a minute. Those days are gone now.

    A cool start of the morning at 36, but we're climbing into the high 50's right now, and sunny.Take care
    .
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

    Comment


      My husband was a bass fisherman and he had a small bass boat. He would have loved catching that bass. I went with him occasionally. I was not much of a fisherman, but he really loved it.
      The weather looks bright and sunny there.
      Virginia

      Comment


        ((((((Ralph)))))) ~

        I'm pleased to see you fishing and relaxing, since you work so very hard everyday. The lake is beautiful and serene, and what gorgeous weather you are having now. Memories of snow have melted away, I guess. Less work for you.

        Praying that Marty responds well to his new meds. If he can't get a palliative care nursing visit, then can he get a hospice nurse visit? Here is where he might consider requesting hospice, if that will get a nurse to him once a week.

        Your rural location is a poor excuse for not having a visiting nurses service for your area. You don't live on the North Pole or in the Sahara desert! And, we're not a third world country. For crying out loud, he has cancer! They "can't" get a nurse to Marty, but they expect Marty to go to a variety of different hospitals/medical centers, relying on others to transport him, when he's weak and ill.

        To quote agate: "It just doesn't make sense," and Virginia, "It just isn't right."

        I am not one to take "no" for an answer in such serious situations. I would call all of the listed home health care agencies to inquire as to their ability to serve a patient in your location. If the answer was "no," then I would contact the hospital ombudsman or patient care representative and file a complaint with a state agency overseeing the hospital system.

        I would also contact my local elected officials to express my concern about the lack of appropriate care for palliative and terminally ill patients. I might even write a letter to the editor of the local and state newspapers, as well as contact local TV stations.

        When we pressure politicians by exposing the flaws in the System, we can create change. Marty isn't the only person in your area, who might need palliative or hospice care, either now or in the future. Social workers refer to this as "unmet need."

        There might be agencies, county or nonprofit, in your area, which could help Marty secure palliative/hospice care.

        I know that it isn't possible for you to do all of this, Ralph. I wish that I could do it for Marty. I wish that someone was able to do this for Marty, and for you, and for all of the other people in your community, who may have the same need someday.

        Prayers, healing, positive energy continue for Marty, you, Joe, and your community ~

        Love & Light,

        ❤️❤️❤️❤️

        Rose

        *Virtual Hugs Are Germ-Free!


        THANKS!






        Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

        Comment


          From Tom Cat today:

          Thanks a million for the input, Rose. Marty's sister is with him right now, and he was with his oncologist yesterday. I'll see him for coffee in an hour. I think yesterday was mainly a consultation. He and I really don't know how to work the system. You and Ann certainly [know] how to get help. I'm not always sure Marty asked the right questions. Nor do I. The uncertainty gets to you as much as the disease. Thanks for being a fighter for rights and services in this complex "representative democracy (?)." Enough, or I'll get us in trouble with "the powers that be," aye?

          I better get my breakfast together, and coffee. I have a couple of deer in the backyard and front yard, plus 2 tom turkeys, displaying in front of a hen. She's not paying any attention to them. And the world goes on. Take care, & virtual hugs.
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

          Comment


            ((((((Ralph)))))) ~

            I have a half century of fighting the System to get what my sons and husband needed. Not many people have that much experience, except for all of the parents of children with disabilities. Without that experience, it is difficult to know what questions to ask.

            Ann was a great advocate for others and herself. It is something we learn as we go, until we become proficient at it.

            Questions I Would Ask:

            1. Why are there no home health nurses/aides for cancer patients in your area to provide palliative care?

            2. Are there home health nurses who provide hospice? If so, sign Marty up for hospice.

            3. Is there a social worker, who can assist in locating in home care from qualified caregivers? Will it be covered by Marty's insurance (I am guessing he has Medicare)?

            4. Are there any volunteers to provide transport, if Marty can't get home health care? (As opposed to paying for Uber or Lyft.)

            I'm also interested in what treatment Marty is receiving now, since Jim went through several different chemo drugs and Opdivo, an immunotherapy drug. It was a matter of "that didn't work, so let's try this."

            My prayers are with you, Marty, his family and friends.

            Love & Light,

            ❤️❤️❤️❤️

            Rose

            *Virtual Hugs Are Germ-Free!


            THANKS!
            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              I've been putting Tom Cat's messages in blue. I hope they're showing up OK for other people?

              From Tom Cat this morning:

              A quick message to Rose this morning. Keep up the good fight, Rose! I'm sure Ann would like to be in on this with you, aye?

              Off to do some shopping in Oshkosh, 35 miles out. I'll get back later. You folks at Brain Talk do keep me going. Thanks.
              Last edited by agate; 05-07-2021, 08:41 AM.
              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

              Comment


                Nothing from Tom Cat in quite a while, and I was concerned. This came this evening:

                It's been a rough few days. I slipped and bumped my head at night and ended in the hospital with pneumonia and antibiotics [drips?] for a couple of days. It's been a crazy week. More later, after a good night's rest. The cats were glad to see me.
                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                Comment


                  I had been wondering about Ralph, but hoped he was just busy. I am sorry he has had a bad time lately. I hope he gets plenty of rest. I am sure the cats will be all over him, but he loves it.
                  Virginia

                  Comment


                    Virginia, I've forwarded your reply to Ralph, and I've been forwarding all replies to him. This was my reply to him:

                    I'm so sorry you've had this bad patch! A fall and pneumonia--that sounds like a situation where you need to take it very easy and give yourself every chance to get over this. Glad you're back home.
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                    Comment


                    • Earth Mother 2 Angels
                      Earth Mother 2 Angels commented
                      Editing a comment
                      ((((((agate)))))) ~

                      I'm so grateful to you for keeping us connected with Ralph. I am sure it must be comforting to him to know that Cat's friends here are there for him on this part of his journey.

                      I worry about him and Marty being cut off from medical caregivers (home care) and in a rural location, where it may take time to get emergency vehicles to the area.

                      I do hope that Ralph has given someone your information, eg. email, so in case something happens to him, that person will contact you.

                      Getting old is quite difficult, isn't it?

                      That's what friends are for ~ to help us through every stage of our lives. To lift us up and encourage us. To understand with empathy and compassion.

                      Thank you for being a friend to all of us, agate. And thank you to all of our friends here on BT.

                      Love & Light,

                      ❤️❤️❤️❤️

                      Rose

                    ((((((Ralph)))))) ~

                    I'm so very sorry that you fell and have pneumonia. My prayers are with you that the antibiotics are working and that you didn't sustain any serious injuries from the fall. I hope that Joe, or someone, is checking in with you regularly to ensure that you are okay and to bring you whatever you may need. I am sure that you and Marty miss each other.

                    God bless you and Marty and all of your dear ones on the prairie.

                    Love & Light,

                    ❤️❤️❤️❤️

                    Rose

                    *Virtual Hugs Are Germ-Free!

                    THANKS!


                    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                    Comment


                      How kind of you, Rose--I will pass along that suggestion to Ralph in case he hasn't thought of it. I don't think a person usually develops pneumonia as a result of a fall, and so I'm wondering if he had an underlying condition that predisposed him to pneumonia, or maybe he was a "walking pneumonia" case for a while and was just soldiering on.

                      I too appreciate my friends here.
                      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                      Comment


                        An update from Tom Cat this morning:
                        Just saying morning. Joe has been tending to my meals and making sure I get my antibiotics pills. He's in Tennessee with wife for a few days now, enjoying time out with their children and new granddaughter. I need the break too . He's a corporate guy and can move too fast at time. He definitely isn't all that into cats. Fed them well, but thought it odd I clean up their clumping litter twice a day or more. You don't want to get it wet in their paws, where they may lick it off.

                        So, it's nice to be home, but there is much to be done on my own. Need to get dishes washed, and rest breaks all the time. With this pneumonia I feel like I'm operating on only half the cylinders at a time. Time to see if I can get some food down me. Thanks for keeping me in mind. Take care with virtual hugs
                        .
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                        Comment


                        • Lazarus
                          Lazarus commented
                          Editing a comment
                          It was perfect hearing from you and I understand your feeling that someone moves too fast! And I cleaned the kitty litter box twice a day! At least!
                          Take care of yourself...and, when I am not eating enough I drink a bottle of Ensure - or Boost- in p,ace of a meal. Maybe it would help?
                          LInda

                        Ralph, so glad to hear from you. I was sorry to hear that the pneumonia is still hanging around. I thought maybe it would be cleared up with the antibiotics by now. Even after your lungs have cleared I expect you to feel tired and unable to do much for awhile. Please do not have a backset. So glad Joe has been around to kind of help out. If you are still on your antibiotics make sure you remember to take them and not skip any. If need be, you can always set a timer. Hope you get to feeling chipper really soon, but try not to rush it. Rest and get plenty of nutritious food. Keep us informed when you can.


                        Agate, thanks!
                        Virginia

                        Comment


                          ((((((Ralph)))))) ~

                          How wonderful of Joe to help you. I hope that you can manage okay without his assistance while he visits his family. Even if he does move fast, his help has saved you from doing anything strenuous. That's important.

                          Do you have paper plates? Plastic cups? Frozen meals? Canned/boxed soups? That would save a lot of cleanup for you. Linda mentioned Ensure and Boost, but as I mentioned previously, Orgain is a plant-based supplement, which would be good for you and Marty to drink. I just don't know how easy it would be for you to find, unless you ordered it online and had it delivered to you.

                          Do you have anyone, who can do your grocery shopping for you? You probably wouldn't be interested in Instacart, if it even delivers to your area, but that is one option to have groceries/household items delivered to your door. Are there restaurants in your area, which deliver take out orders?

                          I'm a bit of an expert in pneumonia, unfortunately, so I advise you to do the least amount of tasks to save your energy. You're going to be fatigued for awhile. Keep your head elevated when you sleep. Maintain good hydration with plenty of water to keep secretions/mucous thin. Practice breathing exercises: breathe in through your nose, exhale through your mouth slowly. This is relaxing and helps to open the airway.

                          You are in my prayers, and I send you healing, positive energy.


                          Agate ~

                          Thank you, as always, for keeping us connected to Ralph.

                          A fall can result in pneumonia, in a Senior particularly, if the Senior is unable to get up or move for a long period of time.

                          My 92 year old grandmother fell out of her bed onto the floor and couldn't reach the phone on her nightstand. She fell at 10 p.m., and the first call she got was from me at 3:00 the next day. I called her everyday about that time. She answered, "I knew you would call!" She was able to get the phone off the hook with the cord. And she just waited until it rang.

                          Somehow she was able to hang up, so that I could call her assisted living facility, who then called 911. I called my uncle to alert him. It was chaos.

                          She had pneumonia. She did not recover after being in and out of the hospital and a nursing facility for 3 months.

                          Ralph hasn't mentioned how or why he fell and whether he has a concussion. He has some health issues, and any of those could be contributing factors.

                          The prairie is beautiful, but I worry about these Senior folks living in a remote area, where medical assistance seems to be sparse. Marty is a cancer patient, and he can't get palliative home health care? That is concerning.

                          Ralph should have home health care too, given his age, that he had a fall, that he's battling pneumonia, has other health issues, etc. So, I worry.

                          You don't need to share all of this with Ralph. He has enough on his plate. At least he isn't out shoveling snow.

                          Love & Light,

                          ❤️❤️❤️❤️

                          Rose

                          *Virtual Hugs Are Germ-Free!


                          THANKS!
                          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                          Comment


                            This is from Tom Cat today:
                            Joe's what I need if I'm to get this place together this year. I've been slipping quite a bit this last year, and need to get things out. I hope to make one more trip north this summer, to see friends but not to stay at the fur camp. Few people left there that I know now. And after a couple of days I need to get back to the cats and prairie.

                            Still feeling woozy in the head, do need to rest often. Having ice cream plus to get my weight up. They say that works great. Take care, and virtual hugs.

                            Oh, I have 2 cat litter boxes, and a new stainless steel water fountain. My cats have proper staff. They know where they stand.

                            I asked him about the "ice cream plus." Not sure what the fur camp is but didn't ask.
                            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.

                            Comment

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