Breathing Easy

Thank you for all the prayers and support since my announcement of AlS on 12/11/11.  The cards and outpouring of love have been amazing.  The prayer groups that have added me to their lists spans the globe.  It is simply awesome.  Words can’t really express how you all make me feel.  I am humbled and grateful.

Specifically, many of you prayed for my first visit to the ALS clinic this past week.  Meeting Dr. Dobson, Dr. Newman and Stephanie, the R.N. coordinator, was a blessing.  They were kind, professional and funny.  I was treated as a normal human being!  (One thing that is not gone is my sense of humor and I look for ways to laugh now more than ever.)

Many of my questions were answered; some were not.  Simply put, no doctor can predict my future.  Really? I should have known that.  I do know that in my head, but I still had to ask:  How far along am I?  How long do I have?  What’s the next step?

With this disease, there is no exact progression of symptoms that occur at the same time and in the same way for every patient.  It can progress quickly and then slow down for awhile.  One person may end up in a wheelchair for a long time, while another dies without ever losing leg strength.  So how do I plan?  What do I do?

Apparently, God wants me to live day by day.  So easy to do when I think I am in control.  But now, when it’s in my face that I am not in control, I realize how weak my faith in God is.  My faith in myself often overtakes. I am a doer, a planner and a slightly over-the-top task oriented guy.

Dr. Newman assured me that my breathing is good, as is my leg strength.  He encouraged me to keep working and keep moving.  He also acknowledged the fact that since 4 months ago I was feeling great, but now am experiencing symptoms in every part of my body…well, that’s not good.

My greatest problems are with my speech and my hands.  Having help with buttons, belts & shoes is inconvenient, but not having my words come out quickly and clearly is by far my greater frustration.  My family is learning to jump in and help where needed.  I can still go to Sam’s Club for the cases of water and Gatorade, but someone else has to unload the car.  The doorknob coming into the house had to be changed to the lever style so it’s easier to open.  It takes longer to finish a meal and for a family of fast-eaters, this is noticeable.  I tire easily and my arms often ache; muscle cramping is now a normal feeling.

Many have asked what they can do to help.  Right now, there is nothing except prayer.  We are considering many options regarding our house: whether to sell and move or to renovate a few areas.  Again, hard decisions to make, especially when it involves finances, and  when we don’t know exactly what path this disease will take.

But God knows….and living one day at a time, trusting in Him….He will guide us.

Ephesians 3:16 “That according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being…”  (read on to verse 21 and it gets even better!)