Sunday, July 6, 2014

Post 78 - STEVE STEIDEL 1944-2014

I'm so sad.  We lost Steve on June 28.
He was doing ok.   We were managing all his symptoms and problems. 
We quietly celebrated our 49th anniversary on June 12.
Then, the following week he started with a low fever.  It climbed to 102.8 even though he was being given a strong antibiotic through an IV. 
Our family doctor sent his nurse practitioner every day.  One day she came 4 times. She was so caring and compassionate.

Steve gradually got worse. He could no longer move his limbs but his eyes stayed on me all the time.  The worse for me was that he could not communicate. We tried everything but his brain wouldn't let him blink his answers and he could no longer squeeze my hand.  He managed a big smile when our two daughters came. We stayed by him around the clock.  He knew what was happening, he could hear and understand until the very end.
After a week of this the nurse practitioner brought in Hospice.  What a wonderful organization.  His lungs then began to fill up and his larynx was closing. The end was near.  The girls and I whispered our love to him and hopefully he left this earth without pain.

I have been inundated with beautiful notes from so many people.  I realize how many lives he has impacted.
I also realized that the hospice nurses are more informed about MSA than most doctors, especially the ones in the ER. 

Steve put so much of himself into writing this journal, especially in the beginning when he wanted to get the word out.  I have tried my best to keep it going for him.  This will be the first post that he is not "editing". 
Will I continue the posts?  I do not know but I will let you know the results of the brain donation.  I understand it takes months before they contact you.

I am including the link to his obituary and a slide show for those that did not know him personally but faithfully followed his blog.

Thank you, everyone for your support.

Fran Steidel


  1. I have only recently discovered my cousin has MSA, for many years we thought it was Parkinsons but he only told me last week he had MSA when I was visiting him, I can't stop thinking about him which is why I went on the internet looking for answers and came across Steve's blog. Fran I am so sorry to read of Steve's passing, I hope you are doing ok and I'm sure Steve will be looking out for you and making sure you are ok Geraldine

  2. Fran - so sad to read of your loss. My name is Ron Ragland. I live in tampa Fl and was diagnosed with MSA within the last year but has been a 3 year possibility. read parts of your blog last week. so helpful. God Bless you.

  3. So sorry for your loss, Fran. MSA is a terrible disease. We will keep you and your family in our prayers. Watching your loved one deteriorate is not a pleasant thing to have to do. Please keep us in your prayers also.

  4. Fran, though I do not know you, or Steve for that matter, I have been encouraged & blessed so many times by this blog. My heart aches for you & your daughters; for the loss that must be huge knowing how devoted you've been to each other.

    Thank you for sharing your grief.

    Kathleen Flanagan

  5. My mother (only 61) is suffering and under hospice care right now with this disease which for years we thought was Parkinson's. Thank you for this blog. I'm still trying to learn about this disease.

  6. I have been following your story for a few months as my mother has MSA. So sorry for your lost but glad to hear you and your daughters managed to spell time with him to the end. Thanks for sharing your story, I have passed on some of the information to my mother, in the hope it will help her in her struggle with this disease.

  7. Thank you Fran. I've been following this blog since the beginning, my mother was diagnosed with MSA about 6 years ago. I've found Steve's and your comments helpful and consoling. I'm sorry for your loss, thank you so much for sharing.