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    • #20585
      Amanda
      Keymaster

      How often do you go to the ALS Clinic or neurologist? Has the frequency or time in between visits increased or decreased over time? Do you see any other doctors or medical professionals on a regular basis and if so, how often. What happens at your appointments (if you are comfortable sharing.) Do you feel that this schedule is sufficient?

      Amanda

    • #20598
      Ilana Schatz
      Participant

      One thing I do is send an update 5 das before clinic (send it to whomever coordinates with the staff. The clinic visits are very productive and the ALS team comes prepared. I divide it into categories (eg speech, PT, neurologist, etc) with 3-5 bullet points (e.g. can’t eat lettuce anymore, having trouble doing transfers, etc). The clinic staff t ell me how much they appreciate this.

    • #20599
      Ilana Schatz
      Participant

      One thing I do is send an update 5 das before clinic (send it to whomever coordinates with the staff. The clinic visits are very productive and the ALS team comes prepared. I divide it into categories (eg speech, PT, neurologist, etc) with 3-5 bullet points (e.g. can’t eat lettuce anymore, having trouble doing transfers, etc). The clinic staff t ell me how much they appreciate this.

    • #20601
      Marianne Opilla
      Participant

      After 2 years, I have come to the conclusion it is a complete waste of time.  I was followed by a reputable ALS Clinic at a large medical center.  I transferred into hospice instead.  My local ALS chapter is more helpful than clinic.

       

    • #20604
      Bill
      Participant

      I do clinic every 4 months. I see my prime als university neurologist every 12 months. So far seems appropriate to me. I do an annual physical with pcp. I’m not sure if that is enough. I have big history of skin cancer so I get looked at every 6 months. I do prep for all visits with both questions and an update on my health info before I go in.

    • #20622
      Kathy stitz
      Participant

      Hi Marianne,

      I was just curious about why you feel your ALS clinic visits are a complete waste of time.  Do you feel the visits are of any benefit to you?  What has your experience with hospice been like?

      • #20658
        Marianne Opilla
        Participant

        Hello Kathy,

        We travelled 2 hours for 4 hour clinic.  They really had nothing new to offer me.  I get more solutions on this forum and from my ALS chapter.  I declined rapidly since January, and decided the clinic was not benefiting me any longer. When I mentioned hospice my neurologist was more than happy to refer me.  So I felt he had nothing to offer. I had breathing issues that my neurologist wanted me to go to the ER for, but hospice is able to treat at home.

        Hospice is a big decision. It is not about dying, it is care for diseases that have no cure. I had to stop Radicava and rilozole, which I had been on for over a year.  I dropped out of open label CMNAu8, which was making me sick anyway.  I have a RN visit twice a week, and an aide to help me shower.  They sit and talk about “hard stuff” and have been very supportive to my husband and me.  The hospice physician has been very helpful with symptom management, and they provide social worker and chaplain. I can go out of hospice at any time if a big cure comes along.  It is right for me, not everyone.

         

        • #20671
          Mark S
          Participant

          It’s my experience that Hospice and Palliative care professionals are the best of the medical community.

          Services are still misunderstood and underutilized. I recently saw people on Twitter jumping on an ALS chapter for hosting talk on end of life planning.

          It makes me upset that there is a segment becoming more angry because they feel there is a miracle drug and it is being vindictively withheld.

          When I worked with Palliative care, I saw often this all or nothing treat everything or give up (mostly cancer patients) stigma when there is evidence quality of life and care leads to better longevity outcomes.

          Trying to live as best you can and following your needs is never giving up.

          It’s not even quiting care. It is choosing different care.

          Be well

    • #20668
      Kathy stitz
      Participant

      Thank you for your response, Marianne.   I am so sorry for what you are going through.   It must be very difficult for you and for your husband and your family.   ALS is such a devastating condition and it’s horrible that there is no hope of getting better.   I had been hoping for a cure but that hope is fading, to be honest.   Best wishes.

    • #20672
      Carolyn Barry
      Participant

      Marianne, I really do appreciate you telling us about your care with hospice, as I had no idea that a person with ALS could receive that form of care.  This sounds very good, and just the kind of care that would be needed.  I really feel for you with all you are facing each day, and I will continue to pray for you.  Mark, it helps to hear your thoughts on hospice care too, as well as your personal experience working with Palliative Care.  I think your last comment really said it so well ~ “It’s not even quitting care.  It is choosing different care.”  My mom was in hospice and cared for with palliative care, I could see how each person tended to her needs in such a kind and empathetic way.  They were angels ~ she truly felt comforted.

    • #20675
      Amanda
      Keymaster

      Kathy, Carolyn, Mark and Marianne – This information is awesome and highlights some of the kindness that exists in our world. Mark I agree with Carolyn, your words are so accurate! When we post discussions about end of life, hospice or similar topics, we give a great deal of thought to the words we use. I think it is extremely important that we can have open discussions about difficult topics on the forums. Again, thank you all for sharing and discussing with such support and kindness.

      Amanda

      • #20678
        Mark S
        Participant

        Individuals, patients, family and providers all have a large range of desires and biases.   Medicine has tried to deal with this by creating first anatomical system specialists, like neurology and then sub specialist by disease.  While there are some disease specific more integrated clinics, they are rare.

        Each clinic and hospital has its own unique biases.  My first hospital was dominated by very conservative Catholics and it showed with respect to EOL care.  My efforts to improve diversity of spiritual counseling didn’t go well.

        Then there is the legal aspect. Also availability of LTC, home care.

        Most people are constrained by what is available locally, and most find the dominant systems.  I always encourage people to look for options if what they are doing doesn’t feel right.  Talk to social workers, keep back up plans and relationships outside the primary group in case you need a change.

        I know we don’t have the energy for this and it would be nice if everything worked well, but the reality is medical relationships can be extremely difficult.

        Everyone needs to understand that people generally don’t refer outside of their system.  You get in trouble if you do. As a result the options presented to you are not the full range.

        It will always require you or family do your own research.

         

         

         

         

         

    • #20677
      Dagmar Munn
      Keymaster

      I always enjoy my visits to the ALS Clinic (and have written much about them in my column and blog).

      During the first few years of my ALS, I was going every three months. But as my symptoms slowed and I was self-managing OK, they dropped to every 4 months. Now, 11 yrs. later, my neurologist has me scheduled at 6 months – – with the option to call or come in if I experience any changes.

      I also still see my dentist and dermatologist when needed. But no more GPN… just go to the local Insta-Care if I get a cough or sniffles.

    • #20681
      Bob Ives
      Participant

      I believe there are many variables involved in this discussion including the pALS progression, the availability of quality clinics, the pALS other medical resources, the preferences of the pALS, etc.  In my case (8 years since diagnosis) I participate in two clinics (one civilian, one VA) 3-4 times a year and find them of great value.  In addition to monitoring my situation they offer counsel and equipment to address my symptoms and provide an opportunity to discuss my specific situation with knowledgeable professionals.  They don’t offer a cure, but they enrich my life and I’m grateful for their assistance in dealing with this dreadful disease.

    • #20684
      Andrew UK
      Participant

      I have had my diagnosis visit last October. I asked if there would be any any further monitoring or tests and was told no. I think that I have had one telephone follow up which was just a check in. I have had more input from the University as I think they are scoping me out for trials but as yet I have not joined any. (I was offered a place on the TUDCA trial but thought that as I taking it anyway there was no point). I do get visits with the Physio and Occupational Health. These are check ins to support me in my decline. Overall, I get the impression that the system has already assigned me to the bin and rationalises that any time spent doing testing is a waste of time unless I am fodder for an RCT. I feel that a great deal of information that could be generated from qualitative trials on individuals is being lost.

    • #20688
      Jim Conner
      Participant

      Just like all of us are different and our ALS is different, so goes our clinics.

      Mine is every 3 months, it was yesterday. I have an orthopedic recovery doctor, nutritionist, occupational therapist, physical therapist, speech pathologist, respirtory therapist, a nurse social worker ( that is also a rancher and we have great visits) and my neurologist ( its like a clown car). We always seem to have a resident or some other student come in. This last time a resident OT from No. Dak. came in and stayed with us the whole time. She was a riot.

      It is getting somewhat repetitive, however my disease is progressing slowly, I guess. It is good to be seen and go over the help we need. I just got onto a Be pap and it was good for all of us to get a shakedown on it. The OT came to our new house and gave some input in improvements.

      Plus some other issues get covered that I would have to make an appointment and wait forever to get in. This is easier.

      I got very receptive, helpful folks. That really helps.

    • #20729
      Karen Goldhirsh
      Participant

      My husband goes to the ALS Clinic at National Jewish Hospital every 2 – 3 months. He is there for 4 hours seeing neurologist, pulmonary doctor, speech therapist, PT, OT, RT and dietician. Some visits involved pulmonary tests. Have received great recommendations from pulmonary doctor (monitors bipap and cough assist data and recently recommended a choking assist machine). Dietician and Speech Therapist have given alot of help with choking on pills – using Simply Thick Level 2 that adds thickness to water when taking pills. taking smaller bites of food followed by liquid to drink.

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