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  Our Lewy Body Journey....today I have been sad....I lost a couple friends on Facebook due to me going through this journey and them not wanting to know about it.....yes I understand...Facebook should always be happy, fake, nonsense...but sorry that is not me....I am what I am....and if you feel you need to delete me...I understand...it makes me sad but I have to be real....and right now this is my life our chapter...our journey....I have tried to study and do all the research I can on the topic....and I still don't understand how one day things are normal and the next day ...you can wake up and the confusion goes on all day.....what changes your diet, your sleep, your attitude, not feeling well.....so far no answers....so on these days we just lay low and try to keep things calm and natural...and I will keep trying to find the answers I need....God bless all you family and friends who have stayed with us on this journey...praying for us and being there for us....I will try to be

  Many of you have been asking ...what were the answers....I will be honest with you, but if you have negative things to say please just move on and don't leave them. Our family has been guessing on a couple problems we thought was wrong with hubby.....but of course it was guesses. We met with the best neurologist ever....very sweet, very knowledgeable, treated us with respect and was so good to hubby.  We were told hubby has Lewy body dementia and Parkinson disease.......he has both.....to medicate one makes the other one go crazy. Plus hubby's surgery for his hernia caused them both to decline. We were given 3 options.....one surgery on his brain to try to slow the process, 2 injections in his eyes and 3 certain types of meds. Now don't go crazy, but we opted out of all of the above.....his prognosis is already declining......so why do something to make it worse when trying to make it better so we are waiting for 4 months when we will return to the neurologist and decide

  You know when a disease or illness comes your way....you are really encouraged to join groups...people who are going through the same issues as you....then you are told you will have to eventually fit the mold....you are no longer called wife...you are now caregiver...you are told the best things to do is learn to lie, lie, lie...it will keep your hubby from getting more confused...you are told certain words not to use such as "do you remember"..."stop don't do that" etc.......I struggle....I guess they know what they are doing but....hubby and I are different...when there is an issue ..we talk and then we pray....it's different when you both know the Lord...even in issues hubby will eventually turn back to what the Bible says........so I will watch the videos, take the lessons on being a caregiver....etc...but in the long run....we will find what works for us...and for us....we believe the hand of the Lord is in this and will help take us through...yes, w

Today in our journey....we always split the housework and home chores ever since we retired...worked out great for us. Today was hubbies turn to make oatmeal for breakfast....he goes into the kitchen and stands for about 10 minutes....comes out and says "I can't. I ask "why?" He says, "I don't remember how to do it." I didn't get upset. I just said "Well OK then, let's do it together"... You know sometimes we grumble and complain over the stupidest things...and yes I am a major one and then we see ones who can't remember. Brings me to my knees. Lord have mercy on me. To see and be thankful for the smallest of things, just saying.

  Another day another problem solved....Hubby has a problem with dizziness...it comes and goes pretty bad....so he doesn't like to walk much...so today I take him to walk Walmart and it is only about 15 minutes and he wants to go to the car...so I say ok let's walk a thrift store ...easy in easy out.... we get there and he gets real dizzy....I turn around and there sets this ...I don't' know what it is called...but hubby set down in it....and we bought it....hubby calls it his "new vehicle" and he loves it....so now instead of going home we are going for a walk at Hells gate and a picnic....hey....we got to do what we got to do....and yes we called the neurologist and she says it's just part of the package we are facing....well we are dealing with it this way...have a great day all...it's beautiful out there....(oh we named it "old blue")