Home Health Care begins….

Home Health Care Starts

This relentless disease has now started to weaken my legs and I am no longer able to walk except for a few steps with assistance.  Diann is still able to transfer me from the lift chair to the power chair, etc.  We are trying to locate a dependable, used wheelchair van, as getting transferred in and out of our car is impossible.  

Because of the weakness in my legs we contacted Dr. Bedlack at Duke ALS Clinic and he sent an order to UT Medical Center to begin home health care.  We just finished our first week with them.  I will have home visits from a Physical/Occupational Therapist twice a week, a Health Care Aide twice a week and a nurse once a week.  The therapist gives my arms and legs a good workout and stretches them and the aide helps with washing my hair, shaving and sponge bath.  This gives Diann a little break as she has been doing this for me for quite some time.

The therapist, aide and nurse are all very nice and considerate.  They all like to carry on conversations and I enjoy talking with them.  Hey, look at it this way, now instead of one female tending to my every need; I now have a total of four!   

At this point in my journey, I am still blessed with my voice and ability to eat.  Diann does have to feed me now as my left arm is too weak to raise to my mouth.  Meal time is definitely not a rush at all.  We sit and talk, and eat and talk, and eat.  I eat everything I want and enjoy.  If I don’t feel like eating, Diann will give me my nutrient through my PEG tube.  I don’t want to lose any more weight.  I think I am pretty much staying the same since we started the supplemental feeding. 

I have learned to make the most of what blessings I have and don’t take them for granted.  You may read my story and think, ‘Wow, I hope that never happens to me’, but you never know.  I never thought it would be in my future either.  I pray that it will never happen to any of you. You need to enjoy every day you are given and make the most of it!  Like it has been said, “Don’t sweat the small things”, let them slide off your back like water.  Life is way too short to let those things get you down.  Stay positive and enjoy your blessings…your health, your job, and your family and friends.  Being negative gets you no where.  Look for the best in every situation and you will be much happier….like   I said, I now have four females looking over me every week.  Oh, Ya!

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2 Responses to “Home Health Care begins….”

  1. Gary Justus Says:

    Don,

    As I follow your Survivor Story I can not help but be impressed with your courage and positive attitude. We can only hope that we would all be as strong given the same situation.

    Your comments about a feeding tube hit especially close to home. My Mother, now age 90, has been on a feeding tube since 2001. While a feeding tube does not provide the same pleasure as eating, it certainly is a viable way to nourish the body and mind.

    Reading about the visits that you have had from some of our fellow John Deere co-workers I can not help but remember the good times that we had working and playing together in Raleigh. Those years were as much fun and as rewarding as any I can remember. Your leadership and support made it all possible.

    One day that I will never forget is when you and I, along with Jerry Ulman and John Carson, played golf at the Wake Forest GC. After golf we stopped at Shuckers for a beer and dinner.
    Several hours, and many pitchers of beer later, we decided to call it a day even though we never did get around to having dinner. How we all got home without an accident or a ticket I will never know!

    Don, best wishes to you, your family, and your support group. You are in our prayers daily and an inspiration to all of us.

    Gary and Karen

    • steffen5 Says:

      Hi Gary,

      Thank you for your comments and support. I appreciate your kind words. Being positive is the only way that you can be in life! I hope you are still out there enjoying golf because you never know when something that you love doing so much is taken away from you how much you will miss it. Hit the hell out of the ball for me buddy.

      That was a good time and a great memory. Yeah how we have all survived this long with no accidents after all of our crazy adventures is amazing.

      I hope that you and your family are doing well and staying healthy. Thank you for your prayers the power of prayer goes a long way…

      Don


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