Updating MSA Patient, My Brother

Posted on February 3, 2014 by Who I am

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.

43 thoughts on “Updating MSA Patient, My Brother”

Tobi on February 3, 2014 at 1:03 pm said:

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…

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- Terry on February 3, 2014 at 5:26 pm said:
  
  Thanks Tobi for letting me know about the thickit!!!!! I wish things weren’t getting bad, but they are. Hugs
  
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babyjill7...Marilyn Griffin on February 3, 2014 at 1:04 pm said:

well …what can I say!…the Sponge Bob t-shirt sure set the new pink scarf and handbag off just right…You are so funnY!…love it!…
Good talking to you …just had you on my mind so much!…

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- Terry on February 3, 2014 at 5:24 pm said:
  
  thanks Marilyn!!!! it was wonderful talking to you!
  
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utesmile on February 3, 2014 at 1:12 pm said:

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!

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- Terry on February 3, 2014 at 4:49 pm said:
  
  you like that shirt huh????? I like shirts with funny sayings or faces. lol
  
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e1aine on February 3, 2014 at 1:51 pm said:

I’m thinking of you and Al. Big hugs.

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- Terry on February 3, 2014 at 4:29 pm said:
  
  thanks Elaine
  
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granonine on February 3, 2014 at 2:21 pm said:

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. . . . .

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- Terry on February 3, 2014 at 4:27 pm said:
  
  I do understand, too well maybe
  
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lenwilliamscarver on February 3, 2014 at 3:03 pm said:

Prayers and hugs my friend

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- Terry on February 3, 2014 at 4:26 pm said:
  
  thanks so much Len
  
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letstalkaboutfamily on February 3, 2014 at 3:33 pm said:

Prayers for you and Al. I am glad your friend is there and you are getting to do a couple of fun things.

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- Terry on February 3, 2014 at 4:26 pm said:
  
  me too!! thanks
  
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stephanielynn75 on February 3, 2014 at 5:14 pm said:

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. 🙂

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- Terry on February 3, 2014 at 11:24 pm said:
  
  thank you so much Stephanie. You are so kind to me
  
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Pingback: Can You Spare A Word of Encouragement? | Garden Variety Neurosis Redux
RoSy on February 3, 2014 at 6:55 pm said:

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

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- Terry on February 3, 2014 at 11:25 pm said:
  
  You are so good for me, you always make me smile with your bubbly personality
  
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Annie on February 3, 2014 at 8:32 pm said:

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.

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- Terry on February 3, 2014 at 11:26 pm said:
  
  Oh Annie, your comment really touched my heart
  
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jmgoyder on February 3, 2014 at 8:41 pm said:

Thinking of you all the time – Terry, you and Al. BTW I love your shirt too!

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- Terry on February 3, 2014 at 11:28 pm said:
  
  oh thanks Julie, that shirt is fun to wear!!! I think of you and Ants alot, love you
  
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Ellen Mandeville on February 3, 2014 at 9:06 pm said:

I helped my dad during his final weeks of cancer. What you are going through is much more prolonged. That you can remain positive and look for the blessings in each day is a blessing to others!

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- Terry on February 3, 2014 at 11:33 pm said:
  
  thank you so much Ellen. It is very rough right now. I am beginning to wish it was over more and more as I see how his body is reacting to this illness
  
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  - Ellen Mandeville on February 3, 2014 at 11:41 pm said:
    
    I have a tiny inkling how you are feeling. By the end of my dad’s life, I prayed for God to take my dad & release him from his suffering.
    
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  - Terry on February 6, 2014 at 11:45 am said:
    
    I can truly understand
    
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brianwilliamsen on February 3, 2014 at 9:14 pm said:

Hugs my dear friend…thinking about you and Al.

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- Terry on February 3, 2014 at 11:35 pm said:
  
  hugs Brian,it is always nice to see you
  
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Jeff on February 3, 2014 at 9:14 pm said:

Terry thanks for sharing the photos. Glad you have a friend there now to help. Stay positive and God Bless.

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- Terry on February 3, 2014 at 11:36 pm said:
  
  thank you so much Jeff, hugs
  
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Luana on February 4, 2014 at 12:34 am said:

You and your brother are in my prayers. May God continue to give you strenght and courage.
With love ❤

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- Terry on February 4, 2014 at 1:11 am said:
  
  thank you and bless you Luana. You are very kind
  
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digitalgranny on February 4, 2014 at 3:01 am said:

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.

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- Terry on February 4, 2014 at 8:21 am said:
  
  thank you very much
  
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Katie on February 4, 2014 at 11:49 am said:

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

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- Terry on February 4, 2014 at 4:59 pm said:
  
  Bless you and Katie. Although you live miles a way I can feel your heart. Hugs
  
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Mona Gustafson Affinito on February 4, 2014 at 12:13 pm said:

Fun photos, and also very moving. Al is blessed, and so are you with the friend, the pink scarf, and the rest of the fun photo of you.

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- Terry on February 4, 2014 at 4:49 pm said:
  
  thanks Mona!!!
  
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Yvonne K on February 4, 2014 at 12:26 pm said:

Funny shirt

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- Terry on February 4, 2014 at 4:37 pm said:
  
  I thought so too!!!!! LOL
  
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  - michael o sullivan on February 5, 2014 at 9:51 am said:
    
    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.
    
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  - Terry on February 6, 2014 at 11:49 am said:
    
    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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