Dandelions of Hope

So many thoughts, and so much to share. Yesterday we went and saw the Neurologist. A gentle man we trust implicitly!! He’s decided to put Ron back on Rivastigmine for his Dementia, he hopes a low dose might be just what’s needed for the agitation, he also ordered a sleeping pill as Ron was rarely sleeping anymore. (The irony is that he’s on the same one as Rosie, he will get 50mg to Rosie’s 12.5) Ron thought about and practiced the whole drive about how to ask the doct...or about his drivers license, as lately he was really struggling and wanted to drive so badly. You see most doctors unless you’ve had an accident won’t pull your license. So although Ron hasn’t driven in almost 4 years, he still felt he could drive and he had a license to prove it. At the end of the appointment while the doctor was writing up the prescriptions Ron asked, do you think I could drive on good days, short distances? . The doctor looked Ron in the eye and says I don’t think so, you know I would feel terribly guilty, if you got into an accident, and someone got hurt . Then the doctor put his head back down and continued writing his prescription for Ron. We had errands to run one being I had to registered the car, ie: needed new sticker . So we went in to get the sticker as the lady was finishing up Ron spoke up and said could I get an ID card and so he turned in his drivers license. This was such a huge event and it took so much insight and courage on his part. He was quite sad for the rest of the day, as he realized it’s the end of an era, and he fears his lack of independence. When you think about it he is slowly losing all things that at one time defined him and defined our relationship and how we were. As a young couple we would often just hit the road on a Sunday and go for a drive to nowhere. Now he hates just going in the car, as he gets nauseous on long rides. The road in dementia can be very long with lots of hills and valleys, and many turns along the way. See more

This reminds me that we need to work together to fight this deadly disease

Well today is Medical Monday and I will start posting something more medical every Monday !!! We at Dandeluons of Hope need to start educating and assisting you to understand Dementia Better!!! Today I want to talk about the science but... through the eyes of a widow who retrospectively saw what the medical profession missed. She has since published in the Journal of Neurology and has assisted, fundraised, and produced a very informative documentary on her spouses fight against Lewy Bodies dementia. This is the article she wrote! http://www.neurology.org/content/87/13/1308.full

There’s a new friend Ron and I have that is very eloquent with his words. He explains Lewy Bodies the way no other can!!! Lewy Body Dementia Not just a memory disorder.... it is a life disorder, you either sleep too little or way too much. You hallucinate, sometimes you laugh at them and sometimes you cry. Your body loses the ability to move, then a few minutes later it moves. You sink into the darkest depression there is, and stay there for days, then poof, you are back to... normal. You act out your dreams, kicking your legs and flailing your arms. You go through bouts of paranoia, then poof, you're fine. Parts of your body burn as the brain tells them to shut down. You lose the ability to stand strait and to walk without a cane or walker to keep your balance. You forget in the afternoon what you did that morning. You forget important dates such as anniversaries and birthdays. You question everything you see to make sure it's real.one minute you're having a great day, the next minute it's your worst day. You become hateful, then pleasant again for days on end.you lose the ability to not piss on yourself no matter how hard you try, you watch family and friends drift away because they don't want to be bothered with your problems or you embarrass them, or they just can't handle it. You sit for hours not wanting to go to sleep because you don't know what sleep will bring. You sit and stare into space not thinking of anything. You try to move and your body won't move. You watch LBD take its toll on your loving caregiver and you constantly worry about them, you look at your youngest grandchildren and know you won't be around to help raise them like you were your oldest grandchildren, knowing that the young ones will only remember you as being sick, not strong and their idol. You become scared of the dark where as you never were before. That my friends is what Lewy Body Dementia is all about Curry Whisenhunt

I have been thinking of all that was learned yesterday with Teepa and all that Lewy bodies is and isn’t. It’s not memory loss, if only it was that simple. IT is an alphasynuclien protein that attaches its self initially to the sensory and motor parts of the brain then either quickly or slowly invades more . It’s the same protein that’s in Parkinson’s. But again different from Alzheimer’s which is like a brain on a dimmer switch with Lewy the brain still has a regular ligh...t switch that goes on and off. So the light can be on for weeks and then it could go off just like that with a flip of a switch. Socials with all their noise and need to focus to be in the moment causes such exhaustion in a Lewy brain! We had Teepa yesterday! Ron participated all morning but by lunch he was done and slept all afternoon and was very agitated all evening and with difficulty resting last night. The light switch didn’t really come on today. Teepa explained these symptoms and more but she is very visual and this is her symbol for Lewy Bodies Dementia and I concur !! Thank you to Ryan Ruckstuhl for sharing this picture with me!!! See more

These tips are never old and it’s always a good reminder to review them once in a while to ensure we are being person centered when we’re talking with dementia patients