Thursday, April 23, 2015

It's been a year since the first symtom

In March 2014 we had went on a family vacation and had a wonderful time.  Everything was perfect! Then it all hit! It has been a year now since his first "weak spell".  He thought that it was his medicine for his cholesterol causing some trouble and the doctor changed them but it didn't help.  That was in April of last year.  Oh my goodness, what a difference a year makes! By the second week in May he had fallen in my sisters yard.  We still chalked it up to "he stumbled". By the end of May he had fallen again helping our daughter, Kim unload her mattress.  Then we knew something wasn't right.  So off to the doctor he went.  At first they thought it was MS.  We thought that was the worst news we could get! We were so wrong.  He went to the first Neurologist after waiting almost a month for insurance approval.  After he saw Dr. Lehman (who was also my neurologist) one visit we were told that he no longer took our insurance.  So then we began again.  But this time while we waited our primary doctor ordered a bunch of test, cat scans, MRI's, x-rays, blood test.  Then we found out that it wasn't MS.  I will admit that we had a party we were so excited! :)  We thought we could handle anything else that was placed before us.  We were so mistaken.  He got worse still.  So then we talked to our Bishop at church (who is an ER doctor) to get a recommendation for another neurologist.  He told us to see Arthur Allen.  So we finally got to see the other Neurologist (and yes we did use Dr. Allen) and he said he suspected it was ALS but that there was one more test to do.  So we scheduled another visit for a couple of weeks down the road to do the EMG.  In the meantime we worried and worried and cried.  We cried a lot. He went in and got the EMG and it said for sure or as sure as a diagnosis for ALS can be.  Then we were scheduled to go over to KU to see the top specialist in the area.  The Sunday before we got his final diagnosis I remember crying to the Lord with all my heart that this wasn't what was wrong. I remember pleading for help and I remember hearing a soft voice saying that he had ALS.  That it would be our cross to bear.  That I needed to accept it because I needed to save my energy for all that was to come.  Our youngest daughter, Samantha was getting married in the temple the week we found out.  It was between her Thursday big day and her Saturday wedding.  That Friday that should have been one of our happiest days was full of tears.  We tried to put on a happy face for her. 
                 It was now August 15, 2014 and we were getting our second opinion.  We both sat and listened as they told us "This is a fatal illness" "You are going to die" "The odds are that you will die between 2-4 years" "You need to make plans" "Do you understand what I am saying?" We sat there and just looked at him.  We had cried so much at this point.  He talked to us about ALS for over 30 minutes while looking at us strangely.  Finally Dan leaned over and whispered "Baby, Can you shed a couple of tears I think he will keep talking until one of us cry,"  We both smiled then and I am pretty sure Doctor Statland thought we were crazy.  But we made it thru the appointment by holding on to each other and our faith.  Looking back I can see why he thought we were crazy and why he was waiting for us to cry but we had had weeks to come to realization that this was it for us.  This was going to be our life for now. 
           We have learned so many things! We learned that you have to be a mind reader to know what it going to happen next.  That everyday is a new surprise.  That you can make it thru this with your faith intact but you have to hold on with both hands.  We learned that we have to rely more and more on outside help.  Something I never thought we would need because we have always relied on each other.  And I have learned that we have so many, many people who  want to help us because they love us.  Next blog will be what happened when.  But just so you know the doctors say my husband is progressing fast and your loved one may not. 

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