I was sitting here on the couch having my usual issues with "Sundowning". Evenings are tough for me and probably most with LBD. I realize the LBD Association, WEB MD and other sites have information about our disease. They have symptoms, treatments, testing, and eve life expectancy, but no advice! So I thought I might write about some of the things I have learned over the journey of LBD.
Since LBD is unpredictable, no one has exactly the same problems. And since it is an up and down disease, one minute you are pretty good and the next minute you are terrible, problems change from day to day. Just the same, there are a few things I think will help everyone.
First, if you can, retire or quit work as soon as possible!! The stress of work is detrimental to those of us with LBD. I had a high stress management position that required me to be on call 24/7! I literally had no down time for the 20 years in civil service. When I was diagnosed, I was determined to continue working and my boss was a wonderful support! But, when I could not recognize long time friends and work mates, and when I could not remember HOW to send travel orders through the computer system, it was time to retire. Leaving that high stress job was the best thing I could have done. Now I can nap when I need to, sleep in if I feel like it, and have no demands on me. I have also found out that with your neurologists help, Social Security disability is easy. So, I recommend you retire or quit working as soon as possible. It will definitely extend your good days.
Second; My neurologist was tenacious! She did her research, got a second opinion, and asked colleagues. She prescribed Razadyne and Namenda early on in my disease. I have read on the LBD Association site and on WEB MD that early use of these drugs delays the severe onset of dementia and that LBD patients have a better response to these drugs than Alzheimer's patients. Now, I am not a doctor and I can only relate what worked for me and what I read. So, do your own research and talk to your doctors! But, while my memory is getting worse and my short term memory is almost non existent, according to my present neurologist, I have been diagnosed with LBD for over four years! I would say that Razadyne and Namenda are my friends.
Third; Learn your physical and mental limitations and let everyone know about them! Friends, family, most people, think you are faking it! You look normal, you are not drooling on your shirt or peeing in your pants, so you must be normal. Well, I'm not. I get tired easily, am not as strong as I was, cannot judge space, make bad financial decisions, and can't remember my address or phone number! I cannot go all day, or paint a house, or even do yard work. As a matter of fact, my long term GP in Virginia Beach told me, NO YARD WORK! I try to follow that. But, yo must set your own limits and then enforce them. Don't let the crowd drive you. The results of overdoing it can be dramatic. I know, I wrote about my experience taking down my storm shutters. I nearly passed out! And when I came into the house, I was breathing very hard, my heart was pounding, I was sweating profusely, and I was weak. That all lasted for about an hour! I did not follow my own advice.
Forth; Have some fun! We are going through a traumatic experience. We have a degenerative neurological disease that is not curable and leads to death! Sounds terrible, but it is the truth. Now, the late George Carlin said; "Doctors have discovered that saliva causes cancer! However, only when taken in small doses over a long period of time." So lighten up and have some fun. Do those things you never thought you would. Last year m wife and I went parasailing!! It was great!
Last; This should be first! Take care of your caregiver. Probably your wife or husband are taking care of you. They know everything about you and are taking on most or all of what you used to do. On top of all of those responsibilities,
they also manage you meds, I have 15 prescriptions at the present, help you move around, maybe do all or most of the driving, and have very little personal time. So, while you can, give you caregiver a break. Arrange some personal time for them. If you need constant care, have a friend come over and stay with you. Also, most nursing homes have respite care day and longer stays. Trust me, we owe everything to our caregivers. Show them some respect!
These are a few that came to mind right now, I hope more will come to memory later. There is one final point. There are a number of outstanding blogs about LBD. Most are from the caregivers and they are excellent. The bloisphere permits us to have a large support group with varied experiences. I encourage you to use this asset and to let the authors know you are there. Share your experiences through comments. I don't know where Linda and I would be without this support group.
Well, I am exhausted, so I will follow my own advice and go to bed. More tomorrow. Thanks for being there.