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    • #21959
      Amanda
      Keymaster

      On our forum, we try to tackle all things ALS, even though some topics are scary and challenging to discuss. We all know that ALS is a terminal illness even though many pALS are living longer. We try to focus on having a good quality of life now!

      Everyone, pALS and otherwise, have to face our mortality. When you are diagnosed with a terminal illness, and you can see and feel the disease progressing, you will likely experience a wide range of emotions. Most of these will be experienced not only by pALS but also by the caregivers and loved ones.
      Anger
      Grief
      Fear
      Searching/Meaning
      Guilt
      Anxiety
      Depression
      Loneliness
      Confusion

      How do you deal with these emotions? Have you reached out to a mental health care provider for yourself, your caregiver, and or your loved ones? Have you or will you reach out to Hospice or other organizations for support? What things can you do to help address some of these emotions so that you can focus on having the best quality of life possible now? What organizations have ways to support the mental health of pALS and their families as their illness progresses?

    • #22452
      Jerry Fabrizio
      Participant

      Hi,

      I have watched my mother and cousin die of this disease I have C9orf72 genetic ALS, Bulbar.  I know what is coming.  When I first received the diagnosis, I would cry every time I talked about it.  Some of that was the ALS.  I have watched what will happen to me and it breaks my heart to be honest.  I like to help people and I do not like having people have to help me.  I have lived 60 yrs. like this. Nuedexta has helped me not cry as much…

      I am not afraid to die, I think that is important, I will fight until the last day.  I was going to say breath, but I am not sure if I will be breathing by myself when I die.

      I deal with the mortality talk with my friends and family by explaining how I deal with waking up each day. I praise God and then start the fight for the day.  I take my pills and sing to help my speech, then exercise and search for new drug trials.  Then all of the sudden the day is over.  Ready for the next day if I wake up. Repeat…

      Now I get to look at these Forums and try to help also.

      Everyone will die someday; I will die someday.  It may be ALS or maybe another heart attack or something else that comes up. I am not promised tomorrow….

       

    • #22461
      Gideon
      Participant

      Hi

      My name is Gideon ,and I caregiver for My wife with ALS

      Anger : Ever hour
      Grief: every day
      Fear: every Moment
      Searching/Meaning  : All over the world try to find any answer
      Guilt: Do I do good enough?

      Anxiety: Every day dealing with the health insurance to provide my wife with right care

      Which they didn’t have any knowledge about the ALS, (98% don’t know what ALS is)

      Depression: When sun go down and you just laying in bed and your eyes just looking at the Celling wonder WHY

      Loneliness: No Family support  , jut old friend far a way from us,

      Confusion: If I am  doing right or wrong

      So sad to see love one just disappear in front of you

       

      Yesterday my wife told me : I know see thy end ,and I am scared to die

      • This reply was modified 3 months, 3 weeks ago by Gideon.
      • #22469
        Amanda
        Keymaster

        @ Gideon

        It sound like a very difficult situation for both you and your wife, and I’m sure that is an understatement.  Have you reached out to the ALS association or Hospice? https://www.alstexas.org/  Sometimes these organizations can help provide some care and support and answer some questions. I’m sure you are doing the right things for your wife.  Please try to connect with some of your local organizations that may provide some help.  You are under a tremendous amount of pressure, as is your wife. I’m so sorry you are both going through all of this.

        Amanda

    • #22473
      Angel Hernandez
      Participant

      Hello Amanda , my name is Angel and I live in Orlando, Fl. I’ve been trying to join a support group in my area but I think the closest one is in Tampa, Fl. I tried making contact to see if I can join a support group even if it’s through ZOOM but to no avail. Do You of any in my area?

      • #22496
        Amanda
        Keymaster

        Angel, let me do some research and see if I can find anything.  I’ll update you in a day or two.

      • #22879
        Amanda
        Keymaster

        Hi Angel,
        Sorry for the delayed response. I was without internet for a couple of weeks and noticed I hadn’t responded to this upon reviewing the forums.

        There is an ALS support group in Orlando, sponsored by the local ALS Association. You can reach the contact person at [email protected] https://www.als.org/florida/local-care-services/support-groups/orlando-and-the-villages-support-group

    • #22477
      Jerry Fabrizio
      Participant

      Amanda,

      That is an interesting idea, Maybe we can a Zoom call for every person that wants to join in America.  Maybe too many will join, and we can have smaller groups all over the country.  I know there are two other people in Saint Louis with my genetic ALS.  I think it would be good to talk to them.

      The only place I can communicate with other people that have ALS is here.  Talking to other people may help us.

      Just a thought.

      Jerry

       

      • #22497
        Amanda
        Keymaster

        @Jerry

        Are you on Facebook?  There are several ALS groups on Facebook.  We could start a FB group for fALS and start there. I’ll do that today.

    • #22480
      Maggie Broeren
      Participant

      Hi!

      I’m Maggie, a pALS, diagnosed 3 years ago. I just started hospice.

      As a married couple, we now see a deeper message being presented to us in all things and in new ways. I/we take time to reflect. We spend more time Listening to others and to one another.  I’m never afraid to have a real conversation about death, but more importantly about life. Death is inevitable, so I’m OK embracing it rather than denying it’s reality.

    • #22485
      JohnW
      Participant

      <p style=”text-align: left;”>Hello everyone,</p>
      I’ve been blessed to be a slow progressor.  Something that keeps me going is my love for Our Lord Jesus.  I pray with my wife we pray to Him everyday.  I offer up my pain and suffering to Him knowing that by by carrying my cross in this world gives me great hope for the world to come.
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      <p style=”text-align: left;”></p>
      .
      <p style=”text-align: center;”></p>
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    • #22513
      Jim Knepp
      Participant

      @Angel Hernandez

      I am a member of an ALS Support Group that has members from the Orlando area. We had in-person meetings in Daytona Beach, and have been having Zoom meetings since March 2020: we “meet” on the 3rd Wednesday of every month beginning at 1 pm. Below is the information for our coordinator:

      Marixa Salgado, MSW

      Co-Director Care Services

      Regional Program Director for East Central Florida

      813-637-9000 x 109

      305-697-3482

      toll free: 888-257-1717 x109

      fax: 813-637-9010

      [email protected]

    • #22878
      Angela
      Participant

      Hello my ALS comrades, I feel or have felt all the above emotions. I have C9orf72 for 2.5 years or more. I have a devoted husband and two young teens on the journey with me. I’m lucky to have enough money and insurance  to not worry about not having things to make my days easier. However the biggest help in facing death has been the support of people around me: ALSA Support Group, friends, family, strangers with a smile and healthcare providers. I found a therapist when I started losing my voice 2 years ago and started biofeedback. This helps me calm myself through tough times and I augment it with a weekly zoom group meditation. I have learned to focus on the moment I am in, and to let go of anxiety about the future for the most part. I still grieve when I loose function but I now realize that we all die and I want to be present for my kids and husband now. I feel we’re all connected through god or our hearts so reach out for each other with a smile or hand squeeze.

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