Making Arrangements

Since beginning my walk down this long, misty path and receiving an official diagnosis of LBD, my wife and I have basically assumed that I will be the first to go. After all, we’re still in our 50’s, theoretically we still have a lot of years, but with the average life expectancy after diagnosis of LBD being around 7 years (last good estimation I saw) the odds are I don’t.

But the past couple of springs have caused us to question our assumptions. My wife has rheumatoid arthritis and is taking some serious meds to control it. One of the major side effects of these meds is to cause the pt to be immuno compromised. Due to this immuno compromise, a normal infection, the flu one year and a rotavirus the next, put her in the hospital for over a week each time. With the flu, she eventually wound up in sepsis. She was lucky to survive that one.

So naturally, being the contemplative people that we are, it didn’t take us long to consider that the freak bug/virus could cause my wife to be the first to go so easily. Knowing that I have been given an expiration date so to speak, we have gotten our legal affairs in order and even bought burial plots. But we had not gotten around to the funeral planning. Just seemed like the last hurdle that kept eluding us. But the fragility of her situation made us understand we needed to correct this. It is not a burden we want to leave to the other or to our kids. Been there, done that. It’s horrible and I’m going spare those around me that hardship if at all possible.

So, a few days ago, we made an appointment and visited the preneeds department of our local funeral home. I won’t bore you or creep you out with the minutiae of that visit but suffice it to say that it wasn’t nearly as bad as I had been dreading and, in the end, it was actually a relief. We now have a tentative plan with several options. We need to give some serious consideration to those options and make final decisions but we are nearing the end of the process. And it feels good. That will be something we no longer have to worry about, it won’t be left for one of us to do for the other at the worst of times, nor will the kids have to make those unimaginable decisions at a time when your mind is numb. It’s the right thing to do.

Take care,



  1. Sorry to hear about your joint predicaments - 50's is no age. I followed you here from healthunlocked. I am not sure about your symptoms, but I was wondering if you had a look at some of the Parkinson's movement posts on there. Particularly interesting is those that are benefiting from high levels of Vitamin B1 and Mannitol. I was wondering whether you had tried either of these and what were the results. Also do you find that diet and exercise help you in any way.

    1. Greetings Alex; Randy has been busy with wood-working stuff, his hobby. I don't know anything about Mannitol but the B1 seems to be every neurologists go-to diagnosis (lack of B1) and act like it will fix everything. In fact I was put on B1 shots back before my real diagnosis and it actually made me worse, not better. But then again, it seems LBD folks have that problem, weird weird reactions to common drugs and things.

    2. Hi Alex, sorry to take so long getting back to you, I’ve been decently clear of late and trying to make hay while the sun’s shining.
      I’ve never tried the mannitol but I do take extra B1 daily, although for another reason, and I have yet to see any difference. As it does seem to be one of the “go-to” remedies now days, I have tried to be aware of any changes I might notice related to the extra B1. So far the results have been nada.
      Welcome to the site, we hope you return often and eventually feel comfortable enough to add your own voice to the debate.

    3. Yes Alex, to emphasize something Randy said, I hope in time you feel you can add your voice here too. There is nothing exclusive really about it, its just something Randy and I got a hair up our collective butts one day and decided to do. But being we are as we are, we know this will not be anything either of us will be concerned with let alone be able to run in a few years so the hope is in time someone else comes along to keep it going. We have a kind of short shelf-life and need to plan that way.


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