Friday, June 13, 2014

What value is an early diagnosis of Lewy Bdy Dementia?

Based on some of your comments, your answer for me might be; A longer time to complain!  And you may be right.  But, I did say I would write about all of the effects of LBD on me including the emotional issues!

But, there are many benefits in having an early Dx.  First of all is proper treatment!  I have read many posts on the LBDA.org community columns about individuals that were NOT receiving Namenda and Arecept early in their journey because the doctor failed to recognize LBD and diagnosed the patient with PD.

Second, and probably self-evident is the chance to get you affairs in order.  I have a friend who died suddenly.  Well, it was sudden to him. He had three major heart attacks and two by-pass surgeries.  A Quad and a 5X.  Then, 5 years after his 5X by-pass, he had another heart attack, that killed him!  Since he never quit smoking, changed his diet, or gave up drinking, he should not have been surprised.  In any case, it took his widow a year to get everything in order.  His idea of a filing system was everything in or on the desk in no specific order!  Who pays the bills in your home?   Having you finances, will, power of attorney, living will, insurance beneficiary, who to contact when you die, the distribution of your IRA or 401k, all make your survivor's life easier.  There is also the issue of where you will spend eternity.  If you always meant to talk to that Pastor that always stops by to witness to you, NOW might be a good time!

Then there are life style changes that can and should be made.  For instance, if you live on 10 acres, 50 miles from a hospital, and you spouse never wanted to live that way, you might consider selling and moving closer to all the things she will need to care for you.  What about a Senior's Community with assisted living, memory support, and skilled nursing, co located with independent living apartments?  That would make your life, and your spouses life better when you really need help.

Then there is the issue of your job.  Can you retire on a disability?  If you can, and trust me, it is not all that hard, you may be blessed with a couple of goo years to enjoy with your spouse and family.  These years have been wonderful for us.

I am sure there are other good things that come from an early diagnosis.  And there are some negative things also.  For instance the stress, on you and your spouse, of having a degenerative mental and physical disease.

I have read blogs and postings on the LBDA website from caregivers who had lover ones die very quickly from LBD. and an equal number of posts from caregivers that had their loved one live for 7, 10 even 15 years.  Now, all of those years were not good ones.  And that alone causes stress and worry.  But, LBD is an unpredictable, roller coaster ride for the patient and the caregiver.

My diagnosis came early and I retired when I could no longer do my job.  Getting away from the stress of my career has actually helped me physically and mentally.  But, the disease has progressed, slower than some, faster than others, in a very unpredictable manner.  I never know one day to the next, where I will be on the LBD journey.  For instance, my insomnia of the early years has returned!  My walking has slowed and became more unstable, and my long term memory has begun to suffer.  Yet, I still do very well, in my own way.  I enjoy life as I can, even away from my friends in Virginia.   Te bed part is being with my Wife.  Even when I am having issues, her company and love are a besting and better than any meds I take.

Early diagnosis is the key to successful, effective, treatment of LBD.  There is no cure.  But the is management of the disease in the early stages that serves to extend these early stages and thus, your quality of life.

LBD is a journey.  The long good bye.  An early diagnosis make this journey as easy as it can be.

1 comment:

  1. U r so right on. My husband passed 6 mos ago from LBD. We were able to maintain a relatively good life up until 6mos prior to his death following open heart surgery. Urinary tract infections and subsequent renal failure were what actually caused his death in the end. We had moved to a condo that I could manage easier and all of his financial affairs were in order. This meant I did not have to deal with anything except my own emotions following his death. And that is no easy task! I do appreciate your blog. Please keep writing. Your words are a blessing.

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