Ron’s Story

Site created on June 21, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by LYNN MARZINSKI

Ron is very much weaker.  He cannot be off his ventilator for more than 20 minutes.  We get him ready for the day in stages, putting his ventilator mask on between activities.  He can no longer eat because even a few mouthfuls gets him very fatigued and I am concerned that he will inhale some of his food or liquids. When he was eating, he had to be suctioned after every meal, to help him cough out any food or fluids stuck in the back of his throat.  He can still take his pills with a small amount of water.  However, this morning, since he choked on the water, he may now be unable to swallow without choking.  Unfortunately, there is no treatment for any of this, because there is no treatment, no cure for ALS.  The hospice nurse and social worker are coming on Thursday and we are going to discuss how to handle his very, very weakened condition.  I am determined to keep him at home, since that's where he wants to be.  But Ron needs to decide how to proceed and what to do next.  I fear none of the outcomes will be good.  He struggles to maintain what function he can, and tries to steer his wheelchair with the joystick, although many times, now, he needs a great deal of help.  Today, while helping him steer his chair, I ran over my toes.  Ron's chair weighs 400 lbs!  I fear I said some bad words......  He smiled.  He is alert and can talk a little.  Now, however, much of his talk is in whispers and with his mask on, it's very hard for us to understand what he wants. Talking makes him tired, so sometimes I take the mask off just to hear what he has to say.   Our boys are here often.  Ben has come from Minneapolis and helps get him up and back into bed at night.  Nick comes and sits with Ron so I can take a nap.  Sara, Nick's wife, is here a few times a week helping and they bring supper one night each week.  Our caregivers and the hospice aide, Cornelius, are also a real blessing to us and help a great deal.  We have much to be thankful for.  Our hope and prayer is that you will all have a wonderful holiday season.  Thank you for all the encouragement, thoughts and prayers you give us.  God bless you all! 
Patients and caregivers love hearing from you; add a comment to show your support.
Help Ron Stay Connected to Family and Friends

Your $25 donation to CaringBridge will help keep this site online for two weeks. And if you donate by March 28, a generous CaringBridge donor will match your donation, dollar for dollar, up to $10,000.

Make your gift in honor of Ron by midnight on March 28 to be counted!

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top