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    • #23054
      Richard
      Participant

      Preventative Care After Being Diagnosed With ALS

      After an ALS diagnosis, do people continue getting preventative care such as colonoscopies, mammograms, skin cancer screenings, cholesterol checks, blood pressure screenings, dental cleanings, etc.?

      I can see 3 reasons not to continue with preventative care:

      1 – the hassle getting to and from the appointment;

      2 – dying from a disease other than ALS may be a blessing;

      3 – thinking that ALS will be cured in the near future isn’t going to happen if past research results are an indicator of future treatments.

      What are other people’s thoughts on preventative care?

      Rich

       

    • #23063
      Dagmar Munn
      Keymaster

      I’ve continued to have preventive care – – for the past 12 yrs of my ALS – – although the list of my screenings and care has been modified. Such as:

      Yes:
      Visiting the dentist – mouth and tooth health is essential. Dental chairs are accommodating as well as the treatment received.
      Cholesterol checks – it’s included in the annual lab orders from my neurologist. Ditto for blood pressure.
      Skin cancer – I visit the dermatologist once a year. As an aging baby boomer, I have to keep tabs on all that over-exposure to the sun from my youth.

      No:
      Bone density – – it’s a given I will have bone density loss due to the restricted weight-bearing from ALS.
      Colonoscopy and breast cancer – – my doctor advised these only if there was a high risk or family connection… otherwise, no.

      Nowadays, getting to and from appointments is not a hindrance, handicap accessible transportation is available. And dying from something like mouth cancer does not sound like a blessing to me.

    • #23068
      Dustin Kassman
      Participant

      First, I agree with your observation regarding the poor chance of an effective ALS treatment becoming available soon. Even if a trial uncovered an effective medication tomorrow, it would take years to analyze the trial data, organize the paperwork for the FDA, get FDA approval, and finally turn it into a product, not to mention the process of getting insurance companies to agree to pay for it. The sad truth is, the people who will benefit from a successful trial haven’t even been diagnosed with ALS yet.  ( Nevertheless, this did not stop me from doing my part by participating in several studies.)

       

      As to preventative care, I continue with regular teeth cleaning.

      Dustin Kassman

      • #23260
        Dick
        Participant

        I totally agree with Dagmar. Try to stay healthy as long as possible.

    • #23080
      Maggie Broeren
      Participant

      Hi,

      Annual physical, dentist visits, daily stretches/exercises- yes

      mammograms, colonoscopy – no

      positive outlook, stay engaged, pray/count your blessings- YES

       

    • #23083
      MaryConnolly
      Participant

      We continue preventative care via annual physicals, dental, vision and dermatology appts. Some of the bloodwork done during quarterly ALS clinic and clinical trial blood draws overlaps with bloodwork required for annual physicals. We also stay up to date on vaccinations (Covid, shingles, tetanus, whooping cough, etc.) Preventative care helps maintain a better quality of life, in my opinion, even in the face of ALS.

    • #23101
      Paul Tavano
      Participant

      I think whether or not you continue with preventative care is influenced by what stage of ALS you are in. My progression is slow so I continue with my preventative care but I can see a time as my ability to manage on my own would impact the way I approach preventative care.
      I have often thought about dying from something else other than ALS would be welcomed but I also think you need to be careful what you ask for. So I, for now anyway, I continue to approach preventative care as I did before I was diagnosed with ALS.

    • #23103
      Brian Stanfield
      Participant

      I try to visit the dentist twice a year. My dentist has a large room where they can clean my teeth without me having to leave my power chair – just a little tilt & recline. If  your dentist can’t accommodate your mobility needs – ask around for one who can.

    • #23112
      Mary Kate Smith
      Participant

      I had a mammogram about a year ago. My chest ached for almost a month.  Never again. I do see my doctors for regular check ups. That is enough for me.

       

       

    • #23119
      Cheryl Teribury
      Participant

      I get my teeth cleaned every six months.

      I cannot endure another mammogram.  Not just because it’s painful, but also because I cannot stand that long and I cannot hold my head up.  I’m going to inquire about an ultrasound mammogram.  I believe it is an acceptable alternative.

      I see my primary care provider for any suspicious skin blemishes.  If he refers me to a Dermatologist, then I will go.

       

    • #23133
      Leo Walter
      Participant

      Rich, I know I will take some criticism for this reply, but,I was cALS for 2 1/2 years for the love of my life, and if one has been diagnosed with say Bulbar Rapid Onset, preventative care is just an annoyance for the patient.

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