Updating MSA Patient, My Brother

Al continues to remain but the changes that he is being forced to deal with now are miles from being pretty.

He is now unable to swallow as well as he was last week. Fluids have been decreased in order for him to not die from choking to death. No more home-made pureed foods, only infant baby foods. No more coke, which is just terrible as that has always been Al’s favorite drink.

He has blisters on his feet. He had a goose size blister on his head which drained this morning. At any time he remains to develop new blisters. The illness is battling against me and his body.

It is determined to come outside of his skin and so gloves and any protection we have available is used at all times. Things are ugly, just plain ugly.

But you know me, I have to find something good about each day. The one good thing is that Rhino jumped up on Al’s bed one time, so I hurried and took his picture. Then I found ice on the trees, and I don’t remember what else, but here are the photos. Oh, I remember my friend who is staying with me made me a pink scarf to go with my new vintage pink purse.

I also want to thank all who have helped with Al’s funding for his tombstone.

snowMerhinosquirreltreetree 2


43 thoughts on “Updating MSA Patient, My Brother

  1. I am happy for you your friend is there! Hey they do make a product you can add to the coke to make it thick to drink.. You can get it at Walmart and drug stores. I think it is just called thick it??? Sorry things are getting bad… Happy you have support! Prayers are going your way…


  2. Good you still find some funny stuff and good stuf to go on. Keep it that way it helps. It is sad to hear about Al and I am sure God hears all our prayers and jsut does it in his timing.Keep putting the fun t-shirts on!


  3. I open every post of yours these days with both hope and dread. Hope that he’s gone, dread that he’s gone. I’m thinking you understand that far better than I do. Praying. . . . .


  4. Many blessings to you and Al. I continue to pray for Al’s release from this suffering, that it will be swift and his transition painless. I pray that whatever is keeping him here would be resolved so he will feel free to go. I pray for your continued strength, that you would be continually blessed with moments of unexpected joy and refreshment for your soul. I pray for your peace, that you will be able to rest when time allows for it, that your mind will be at ease throughout the remainder of this process, and you and Al will both know how loved you are in all things. Blessings, my friend. Abundant blessings. 🙂


  5. Pingback: Can You Spare A Word of Encouragement? | Garden Variety Neurosis Redux

  6. A fancified minion – I like that! 😉

    So very sorry about the suffering & down times that nasty MSA brings.
    I keep & hold you both in my prayers always.
    {Hugs} to you
    {Hugs} to Al
    {Hugs} to your friend


  7. Sometimes angels come into our lives and sometimes people leave to become angels. Al is certainly on his way to becoming an angel. After all, his name already begins with “A”. Although you don’t know me, I will be holding you and Al in my prayers for a beautifully peaceful transition. Much love and blessings to you and your family.


  8. Sending prayers and asking for ease of passage and it is time for the angels to open the door and to guide Al home.
    So happy your friend is there.


  9. Sending prayers for you and your brother Al! You are in my thoughts, Terry and even if I do not know you, even if I live thousands of miles away, on another continent, my heart is with you. My grandmother went through almost the same situation, and I know how incredibly painful it is to watch your loved ones dying before your eyes. I pray that God will make this transition, this passage to the kingdom of Angels easy for Al. Please keep on being strong, Al needs you to be strong. May God Bless you and all your family. Love, Katie


      • Terry everyday i wait with trepidation to read about AL.I read and think that AL is still alive im happy for a second or two and then reality comes in and i am so sad that this thing hasnt let him go and be in peace.Why if there is a god is he letting AL and you suffer so much.Surely both of you deserve an end to your suffering.I think to myself that the most righteous,kind , loving and caring people are made to suffer more to prove how good they are before the gates are opened for them.This is the only way i can make any sense of all the pain and suffering you are both going through.I know what is coming for me and have made my peace and truthfully do not fear it. Ido however fear for Marilyn and my children and grandchildren. I see the pain and hurt in all their eyes now and it is so sad. The pain in my Marilyns eyes i have no doubt mirrored in your eyes Terry.Iwish i could have all the agony you both have put onto me .There is nothing anyone could do to hurt me more.I feel so much for you and AL.We are thinking about you both constantly ,You are in our hearts and we wish you both everything you wish yourselves and more.I wish we could do more .May your god his son and all his angels love you protect you and help you find peace . Michael.


      • Michael, you are the first person who has repeated the thoughts I have constantly. IF there is a God, why would he allow something so bad remain for so long continuing to allow even more complications from his not passing. I always believed in God, but I will be very honest. I question now more than ever. I have believed without seeing. I have believed what I read, but when it comes down to the nitty gritty, what proof do I have? Then I snap out of it, tell him how sorry I am for questioning, but then find myself right back in that spot. For Al he is mentally challenged, so I hope God is not trying to teach him something, for it would be very hard in his state of illness and mind. If God is trying to tell or teach me something, then for heaven’s sake point it out to me. Don’t let Al linger and suffer because I am too ignorant and human to figure it out. Thanks Michael for letting me think out loud. Love to you and your wife


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