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Martino Caretto

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@mcaretto69

Hi! Curiously on Monday, 6/15, it will mark the third anniversary of my ALS diagnosis! I was heartened to read that you have been a PALS for 10 years! As I am now virtually retired, I have plenty of time to do all the reading I could not do when still working and spending more time with my wonderful, caring wife and son. Thank you for your post. Martino View
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    Martino Caretto started the topic Nurown in the forum Research Topics 2 years, 5 months ago

    Any one who has been participating in the Nurown trial? What does it entail for the patient? What medical procedures were undertaken?

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    Martino Caretto replied to the topic Information or results on Radicava (Edaravone) in the forum Research Topics 2 years, 7 months ago

    I am a PALS, 69 years old, male, diagnosed in June 2016, spinal onset, on Radicava since October 2016. On assisted mechanical ventilator and with PEG feeding tube since Feb 2019. Wheelchair bound since 2017.On Radicava since October 2016. Having just overtaken the 3 years mark since diagnosis and considering my present condition, I would say…[Read more]

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    Martino Caretto replied to the topic How long did it take for an ALS diagnoses? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 8 months ago

    In my case it took just over 12 months. I am 69 years old, the diagnosis was in June 2017: first symptoms appeared in early 2016, two falls, difficulty in lifting weights, pain in the lower back, general loss of strength in the muscles. Visits with general practitioner, MRI twice with back pain specialist, sessions with chiropractor and finally…[Read more]

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    Martino Caretto replied to the topic Do you take edavarone (radicawa) treetmen? in the forum Living With ALS 2 years, 9 months ago

    I have been on Edaravone for almost 3 years, basically a couple of months after diagnosis. If you look at the progress as measured with the ALSFRS you would probably conclude that my rate of progression is somewhat slow: however as we do not know what the progression would have been without Edaravone in my case I cannot really say if and how much…[Read more]

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    Martino Caretto posted an update 2 years, 9 months ago

    Hi!
    Curiously on Monday, 6/15, it will mark the third anniversary of my ALS diagnosis! I was heartened to read that you have been a PALS for 10 years! As I am now virtually retired, I have plenty of time to do all the reading I could not do when still working and spending more time with my wonderful, caring wife and son. Thank you for your post. Martino

  • Profile picture of Kathryn F. Kennedy

    Kathryn F. Kennedy and Profile picture of Martino CarettoMartino Caretto are now friends 2 years, 10 months ago

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    Amanda and Profile picture of Martino CarettoMartino Caretto are now friends 2 years, 10 months ago

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    Martino Caretto replied to the topic Any information on availability of Ibudilast? in the forum Research Topics 3 years ago

    Hi.

    I have been on Ibudilast for about 6 months.I am 69 years old, diagnosed in June 2017, wheelchair bound, on ventilator and with PEG tube. I get it from Holland at the price mentioned in the question. Reliable service. Difficult to say if and how much helpful. I am also on Radicava, same conclusion, but I thought I would give a chance to…[Read more]

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    Martino Caretto replied to the topic Radicava? – – What advice, comments or tips do you have? in the forum Living With ALS 3 years ago

    Diagnosed in June 17: on Radicava since October 17. On mechanical ventilation and with PEG since Feb 19. Wheelchair bound since end 18.Infusions administered at home through port, no issues, rather easy. Not in a position to say if progression has been impacted by Radicava. Also on Riluzole since 10/17.

     

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    Martino Caretto replied to the topic Ibudilast (Ketas) in the forum Research Topics 3 years, 3 months ago

    Well, the best hope would be to slow down progress, so I do not see an improvement and I cannot say what the progress would have been without it.
    However progress on ALSFR scale has been 2 points in about 8 months.
    I am also on Radicava and Riluzole.

    In a nutshell, I cannot really answer your question with certitude. The neurologist…[Read more]

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    Martino Caretto posted a new activity comment 3 years, 3 months ago

    Hi Dagmar! Delighted to make your acquaintance and to see that you have been living with ALS for 10 years and looking great!

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  • Profile picture of Martino Caretto

    Martino Caretto replied to the topic Ibudilast (Ketas) in the forum Research Topics 3 years, 3 months ago

    Hi. I am a PALS, onset in 2016,diagnosed in 17, now with feeding tube and on ventilator, male, 69 years old. I was ” prescribed ” Ibudilast about 5 months ago: I order it through ” The social medwork ” a Dutch company: they source it in Japan and have it delivered to my front door. Your doctor could write a letter to them stating that he/she…[Read more]

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    Martino Caretto became a registered member 3 years, 3 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 3 years, 3 months ago

      Hello Martino,
      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010. If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic.

      If you have any questions, concerns or even…[Read more]

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        Martino Caretto replied 3 years, 3 months ago

        Hi Dagmar! Delighted to make your acquaintance and to see that you have been living with ALS for 10 years and looking great!

    • Profile picture of Amanda
      Amanda replied 3 years, 2 months ago

      Hello Martino, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let u…[Read more]

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