Feb. 24th Update on Al


Feb. 24th Update on Al

Hello my dear friends. I have been very busy. I have had too many days without help so it is slowing me and my energy down. I am more tired. Al is continuing to get worse. His fever is trying to stay high even through Tylenol.

Last night he scared the crap out of me. I tried to turn him over on his side. What I saw is what scared me. His half side of his face was white dots. I mean dots all over,…

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Feb. 24th Update on Al


Hello my dear friends. I have been very busy. I have had too many days without help so it is slowing me and my energy down. I am more tired. Al is continuing to get worse. His fever is trying to stay high even through Tylenol.

Last night he scared the crap out of me. I tried to turn him over on his side. What I saw is what scared me. His half side of his face was white dots. I mean dots all over, every pore was filled. His ear was covered in white dots and down inside his ear.

He was able to talk just enough to let me know his throat hurt and his other ear was beginning to hurt. I looked inside his mouth and his tongue was a full dose of white polka dots.

It was late evening but I called Hospice anyways. Not wanting to come out, they were not sure what it was, but they did advise me of something to give him until they arrived this morning.

So all night I was up with Al fighting his fever and trying to keep him comfortable. He finally drifted off to sleep around 3am, then so did I, but was woken up at 7 by a text. I got up, realizing that my day was not going to be a good one to start and also I knew the shower gal would be here in one hour.

I decided to take a shower to help wake up. I am too old to go for a whole day with only four hours. The nurse did come this morning and I learned that Al is really fighting a fever now because the MSA is just running rampant inside Al. It is so bad that it is seeping out his pores.

What I was seeing last night was the illness itself. I felt at that moment I was going to be ill, and I could only imagine how my poor brother must be suffering. My day drug by and it went pretty slow. I never did take a nap but I hope to go to bed earlier tonight.

This evening Al was watching a movie of Laurel and Hardy.laurel and hardy I decided to take a couple of photos of Rhino, our cat and I did one sketch tonight. I thought I would share with you also what I did.

Please continue to pray for Al and me. I had a panic attack today but thanks to a dear friend online I was able to keep it at bay. I think I am just plain exhausted and I crave sleep. Hugs to you all and thanks for being patient with me for my lack of writing quite as often.

RhinoRhino 2flower

A New Responsibility Due to M.S.A.


I just got off the phone with Hospice, making arrangements for his return home. The nurse said today has been awful. He is upset, crying. She and I talked about his medications. She believes it is time to make yet another increase on his calming meds.

We do this every few weeks it seems. Pretty soon Al will be on so many calming and pain medications he will just sleep all the time instead of the 16 to 18 hours per day. It is sad. She and I agreed that his good days are decreasing with more bad days in between.

She told me that starting the morning after he arrived his hands quit having their fine tuning. They have had to feed him each meal. This broke my heart. The nurse said out loud, ” how much longer is he going to have to suffer through this?” I told her I ask myself that all the time.

So now he comes home tomorrow evening and I have one more responsibility added, feeding him. I hate M.S.A. with a passion. I hate how it strips a person of his/her dignity. I hate how the memory is not affected in any way. This way more depression can set in mocking the patient, reminding them of what they used to be able to do.

I hate it so much I could scream out loud, Scream to the heavens, wake the whole country up with my lungs. I wish I could wake up and discover this was a terrible nightmare.

There isn’t enough awareness. There aren’t enough funds. There isn’t much other than research, which is exactly what is needed in order to save a life. But for my brother it will be too late.

Please, don’t let your pennies go into the piggy bank. Put them to good use finding a cure for M.S.A. Give a donation in Al’s name or just to M.S.A. Let’s find a cure before the next loved one lost is someone you know.

Please donate here: http://www.multiple-system-atrophy.org/donate

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