Well that Sucks……..

Ok, Yes I know pretty strong words for a blog with the name Jesus and Dark Chocolate!  But I have come to the conclusion that Early Onset Alzheimer’s pretty much sucks!
Today Curt and I got up early and ventured to Johns Hopkins Bayview Medical Center for an evaluation by a specialist there.  We were greeted by a fun lady who is a Baltimore Raven fanatic,  we had a great time chatting with her and almost got ourselves invited to her big football party tomorrow!  I then quickly realized, the reason she loved Curt and I so much is because we were one of the youngest couples she has seen in her office!   As a matter of fact the Dr. we saw, stated that Curt’s case is very unusual since “he is so young!”
I then asked how many other Early Onset patients he has seen in their 40’s.


He replied simply….”none…”


Curt then replied “then I must be really special”…..got to love the man’s humor amidst such serious words.
But those words did not sit well with me and neither did the memory testing Curt endured in the office.

Simple things like~ I am going to show you a pattern with my hands and then please do the same thing (think Rock, Paper,Scissors , Shoot type thing), or I am going to say 4 words and I want you to repeat them back to me in 1 min after you name as many animals as you can in 1 min, ( got to love Curt with this one, he named things like aardvark, muskrat, moose)  or I tap my hand twice, you tap once, I tap once you tap twice ~

Curt struggled through all of these things!  It was painful to watch and I could tell he was getting so frustrated!

It all drove home to me the horrors of this disease.

I have also come to realize in terms of the medical world there really isn’t a lot of hope for patients with Alzheimer’s.

Curt will get some further testing including an expensive blood test that is not covered by insurance, and a PET scan. Depending on the results he may be prescribed a new, cutting edge medical “food” that he can take.  But aside from that there is little ongoing therapy, meds, or treatment for this dreaded disease.  And I have a feeling the medical “food” is no prime rib, it sounded like some gaggy shake you drink once a day. I am guessing it does not come in Snickers flavor! 🙂
So as we found today our options are few….. a harsh reality!

But one bit of hope today was found in Curt’s own words…..“It is what it is, the Lord is in charge, God has a plan for ALL of this!”

He’s right!


2 Corinthians 4:16 ~Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.

Ephesians 1:18 18 ~ I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints.

With Christ there is always hope, so I will not lose heart! 🙂

Thanks for praying for us today, your support has been so overwhelming dear friends!!

~Sandy

BTW, the picture at the top is of the two of us enjoying lunch together today after Hopkins.

Advertisements

28 thoughts on “Well that Sucks……..

  1. Hi Sandy,
    I am saddened to read your post and yet uplifted by your spirit! I spent a good bit of time researching today and have made some calls looking for support systems in our area for EOAD. I will contact you this weekend to find out when we can meet again, But, if you want to get to me sooner, call my cell # 799-7647. I printed out some great stuff from our local Alz. association website.
    I am so looking forward to working with you on this journey. I know we can find some support and I know we can fight for more awareness and support together if that is the path you want to take at some point!! You and Curt amaze me at your strength and your positive outlook! I truly believe you are meant to be in my life right now too! I am praying for you and thinking of you often!!
    Kristen

  2. It sucks and stinks and everything else. But you and Curt have an amazing attitude and trust in God. You are an encouragement to me when I should be encouragement to you!

    Praise God for the hope of eternal life found in Christ! If only for this life we have hope in Christ, we are of all people most to be pitied.

  3. It is so hard to understand how God will choose to glorify himself through this journey… but I trust that He will. While the following Scripture often is used in reference to going places or making life changes, I think it is very appropriate for this journey you are on…
    Exodus 33:14-16
    14 The LORD replied, “My Presence will go with you, and I will give you rest.”
    15 Then Moses said to him, “If your Presence does not go with us, do not send us up from here. 16 How will anyone know that you are pleased with me and with your people unless you go with us? What else will distinguish me and your people from all the other people on the face of the earth?”

    As you walk this journey, may you know His presence and rest. I pray for all the others who will see God’s pleasure in you…

  4. UGH…it DOES suck….and your title is what drew me in to read this, this morning! Real words for real people. Love it.
    I am still praying as are a couple of my friends whom I’ve shared your story with (they don’t do blogs). Your spirit, and Curt’s spirit through all this is amazing and a real testimony to any unbelievers in your life or who might come across this blog…..you are also a testimony for the body of Christ!!

    Here’s a verse for you I thought of: “fear not for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand.” Isaiah 41:10

    cling to the scriptures, as I know you will! hugs to you….

  5. My mom always HATED those memory tests. She felt they were demeaning, even when she started missing more and more of the answers. But her doctor wasn’t a very compassionate man to start off with… I pray that Curt’s home doctor will be caring; you definitely need that.

    I can’t imagine how difficult this is for you both. Yes, it sucks. But I love what Curt said:
    “It is what it is, the Lord is in charge, God has a plan for ALL of this!”

    It doesn’t make it NOT difficult, but at least you know this isn’t happening for no reason. God works with purpose…and his long-term plans for your family are good…

    Thanks for the update. Continuing to pray.
    Love you,
    Lisa

  6. Wow girlfriend. I am still in shock. I’m so saddened for you and your family to be going through this. My heart goes out to you, Curt and the kids. You know I have walked the road of a terminal illness with my son. It’s the hardest thing you will ever do. It’s one day at a time and like you said – doing life as normal as possible. I’m glad you have so many friends around you up there. If I can do anything down here in good ol’ Maryland – let me know. Would love to visit again too. I’m praying for God’s peace and wisdom to resound with you both. God will get the glory in all this. Thank you for your witness. It may seem cliche – but it’s a great truth, “And we know that in ALL things God works for the good of those who love him, who have been called according to his purpose.” Romans 8:28.

  7. Sandy, yes, it does SUCK!!! But your uplifting spirit and positive attitude and trust in God is soooo inspiring. Curt’s comment of “it is what it is” is a saying my Steve uses frequently to deal with life. My Mom (who I lost to breast cancer 8 years ago and still miss her immensely everyday) used to say the same thing. She used to tell me that , “Diane, you have to play the cards that are dealt to you and do it with as much grace and faith as you can”. She taught me so much because with all she went through she never had fear. She always told me that she would do whatever she could but she know ultimately God was in charge and she wasn’t worried. Sandy, it is obvious you and Curt have this same way of living your lives. I will continue to life all of you up in prayer! And yes, wouldn’t it be nice to sit down and have coffee and chat. Maybe one day! Di

  8. Sandy and Curt–I got to your blog through Lisa Notes. I’m a bloggee, meaning I don’t write one, but I read a lot! I am shaken, saddened, sickened and any other “s” word you can think of by your situation. Curt is only five years older than my oldest child and I feel that even I am too young for this awful disease. But having lived as long as I have (70 years), I have seen God’s presence in the worst of circumstances and I have seen Him work in the most seemingly helpless of situations. I DON’T believe He “picked” you out to be an example “because you can handle it” as some might say. I DON’T believe this is His perfect will for any of us. But thanks to sin entering the world, “it is what it is.” And I DO believe He will bring good out of this. Please know that even though we have never met, I check your blog each morning to see if there is an update, and then I pray for you, and especially your children as you come to grips with life as it is. One of my favorite verses is Isaiah 45:3: “I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the Lord, the God of Israel, who summons you by name.” In your particular darkness, you may not think there are many treasures. You may not always be happy by the fact that God gives riches in those secret dark places. But God will continue to call you, Curt and Sandy, by name and announce, “I’m with you. I hate this just as much as you do. It wasn’t My perfect plan for you. BUT, I’m here and I’m asking you to trust Me and lean on Me and I WILL take care of you and your children.” My prayers will continue. Please feel my hugs from an old lady you’ve never met!!

  9. You are such an awesome lady, sharing so genuinely how you feel and your honestly is so encouraging. Even christians get frustrated and mad at times we just have God on our side and can always crawl up in his lap to share how we feel. I can’t imagine what life would be without God for someone who is struggling with a disease like this. Keep sharing so we know how to pray for you guys. Stay close to God – he loves you !

  10. Sandy and Curt, You two look terrific, expecially after leaving the Doctor’s office with all the frustration of everything. Just on Thurs I met a man whose Mother
    had dementia at age 50. He said hers was in her frontal lobe of the brain, and
    was not dignosed Alzhermers. He was going to send me some info. He mentioned
    the FDA does not permit certain medications and he and his family went elsewhere for help. I am sure at this point you have heard all kinds of comments.
    It is hard to really know what to believe and trust. I admire both of your faith and attitude and I believe that will sustain you and give you hope. How fortunate to be so close to John Hopkins Hospital and to get the top care. You two make it
    easy for God to be by your side and guide you along. Keep the humor flowing,
    enjoy the family togetherness and the love you all have. I pray everyday and every Sunday in Church for Curt and the family. Sending you lots of love from
    the Campbell family. Love and hugs, Aunt Carol

  11. Sandy,
    I’m reading a book entitled, How Could A Loving God…? It is by Ken Ham (of Answers In Genesis) He talks about things like, how can God love us, yet allow us to suffer in this way? What is the point of it? Is there a purpose?
    It is a provocative book where he talks clearly about the answers found in scripture.
    For those of us that have watched family members suffer…..it really hits home. When people ask how can you remain so upbeat?
    I think you would find this book helpful as you and Curt go through struggles. Because it is real. And it is profound.
    I think of you and your family often throughout each day. I lift your name up to the throne. Though I have never met you face to face, my heart is with you, my dear sister in Christ.

  12. Hey Sam,
    You have recieved some very encouraging responses to your blog. I can imagine how exhausted you must feel after all that testing. I like the scriptures you put up, I think that is so important to keep God’s word in your heart and mind during all this. Love you and pray that God will continue to give you just what you need for each day.
    “But I trust in you, O lord; I say, “You are my God.” My times are in your hands.” Psalm 31:14
    Love Ann

  13. Sandy, this is my first time to post to your blog (I have been reading it off and on ; my sister, Lisa – from LisaNotes speaks highly of you), plus my name is Sandy and I love Jesus and dark chocolate too!! 🙂
    Anyway…I just want you to know you are all in my prayers and I’m sorry this is happening. I remember years ago (before my mom was even diagnosed) thinking she probably had Alzheimers and I was devastated and went through a depression and a grieving process. Once I finally cried and cried, and talked with friends and family…I came to an acceptance, but it truly was a process. I believe in “feeling your feelings” and releasing those swirling emotions inside of you right now. May God provide you with the strength and comfort you need every step of the way.

  14. When I feel frustrated that there is nothing much we can do than pray, I get reminded that if prayers can move mountains, it can bring back memories. Love and hope never fails.

  15. I read this post and cried, not in a losing of heart way, but that you guys are going through this trial.

    These lyrics may minister to you.

    Jesus Culture – Your Love Never Fails

    Verse 1:

    Nothing can separate

    Even if I ran away

    Your love never fails

    I know I still make mistakes

    But You have new mercies for me everyday

    Your love never fails

    Chorus:

    You stay the same through the ages

    Your love never changes

    There may be pain in the night but joy comes in the morning

    And when the oceans rage

    I don’t have to be afraid

    Because I know that…

    Never forget how much you are loved, Sandy!!!!

  16. Sorry, here are the full lyrics…

    Jesus Culture – Your Love Never Failsby Bellann Klinger on Saturday,

    Verse 1:

    Nothing can separate

    Even if I ran away

    Your love never fails

    I know I still make mistakes

    But You have new mercies for me everyday

    Your love never fails

    Chorus:

    You stay the same through the ages

    Your love never changes

    There may be pain in the night but joy comes in the morning

    And when the oceans rage

    I don’t have to be afraid

    Because I know that You love me

    Your love never fails

    Verse 2:

    The wind is strong and the water’s deep

    But I’m not alone in these open seas

    Cause Your love never fails

    The chasm is far too wide

    I never thought I’d reach the other side

    But Your love never fails

    Bridge:

    You make all things work together for my good

  17. Hi Sandy,

    I have been praying for you and your family since I first read your blog. Thanks for your wonderful faith story. (I am a friend of Missy Jeanes’ family.) I thought I’d share the following article with you that talks about a doctor who has her husband take coconut oil daily to help his memory.
    http://www.tampabay.com/news/aging/article879333.ece

    Lifting you up in prayer, Brenda

  18. Know that our sovereign God has His Everlasting Arms wrapped around you and your family….every day, every minute, every second. And yes, I can only imagine how much it does suck!! (I am a good friend of your mom and dad from church)
    My husband and I pray for you every day, knowing that God still sits on the throne, even though there are many times we don’t understand why He allows such trauma in our lives.
    Sending you love, prayers, and rich blessings,
    Cindy Shoemaker

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s