An Alzheimer's Update

Miscellaneous and Personal Stuff I Must Share
1

For those of you not following the blog, but who may be concerned, here’s what’s going on with me these days as far as the EOAD:

  1. No longer driving
  2. No longer cycling due to balance problems and the early-stage Parkinson’s
  3. Still have cognitive abilities, although I am still having memory problems (in another post, I mentioned cutting up the wrong debit/credit card, but that’s just one of many instances)

I am seeing a psychiatrist, because my neuro-guy feels like I need some therapy in addition to the meds.

Apropo meds: I have now been prescribed Lamictal, which is a “mood stabilizer”, not an anti-depressive, and this should make the mods happy, because it means no more “Quasi-Rage”. It’s going to take about a month to kick in, but everyone on my alz.org support group thinks it’s a great med. The pharmacy had to order it, and I will start taking it Monday.

Other than that, you still can’t tell by looking at me that I have this shitty disease, and I guess that’s a good thing, right?

A sleep study is in the works and there is still that damn Neuro-Psych testing I have to get done. I have been having insurance problems and so that slowed things down.

Anyway, that’s what’s new with me.

Thanks

Bill

2

Thanks for checking in. Are you still going overseas?

3

I’m really sorry you have this shitty disease.

Is it wrong of me to be fascinated by it’s progression, shown in you posts? I don’t mean that in a bad way, I swear.

And truly, I haven’t noticed (in my limited access to the boards) any progression.

My best of luck to you, and yours - for this is certainly a sucky disease.

4

NinetyWt: That’s been put on hold for now, because of money concerns.

As a matter of fact, I am looking at bankruptcy, and that just makes me sick at my stomach to think about, but since I can no longer work as an RT, I have filed for disability, but as you know, that’s a very long process.

Right now I get a small pension (starting in June), but other than D’s income (also an RT) that’s all there is right now. I am selling a couple of my beloved guitars and my Yamati 200hxp scooter, just to have some kind of a “cushion”.

Dolores: Please don’t worry about that, okay? The aim of my blog is to educate as much as it is a diary of sorts, so if you’re “fascinated”, then you are also “interested” and that’s great.

Thanks

Bill

5

Bill, how are your emotions affected? My dad is in the early stages and is giving my mom a hard time right now. For example, he wants her with him all of the time and gets stressed out when she goes out. His emotions are all over the place lately. What can we do to help? My sister and I are visiting more often and encouraging my brothers to do the same, but he really just wants his wife. How can we get him to back off a little and quit being so clingy/angry?

I know you probably have some insights about the emotional aspect, and any advice would be truly helpful. If you don’t want to talk about this, that’s OK too.

6

Wow! I answered this 2 hours ago and it still jas =not posted, Sorry** PH**.

I believe what I wrote earlier was something like: could your Mom give your Dad something to do that would last till she got home, or is his concentration not intensive enough.

I’m fixin to be on a mood stabilizer to keep me from being so emotional. It is called Lamictal, but there are many other brands. This may help him as well.

I know about “emotional”, because I am going through this now when D. leaves for work or shopping. Sometimes I go along, but mostly I stay home and clean house.

I have problems with crying, sometimes too, so that is why i’m looking forward to the new meds.

Do you know about www.alz.org? It’s a wonderful support site and you and your siblings and Mom should take a look. The message board portion has a section for Caregivers (that’s y’all) and they address situations just like you describe.

Good luck, PH and please let me know if I can help again.

Bill

7

You’re a good man, Quasi. I love reading your updates and hearing from you, because I don’t really read the blog too often, I just like getting my news in my bits and pieces.

8

Do you keep “on track” in conversations with friends and family - as well in writing threads? Is it an effort?

And when you are alone and just thinking - where does your mind wander - the old days, new thoughts or the here and now?

9

I had missed the announcement that you were no longer working; last I heard you were still doing so. I hope you have no problems with getting disablity started!!! Will the disability be through work, or through Social Security?

Good luck with the Lamictal!! I had heard of it, as it’s an anti-epileptic as well as other uses, though I don’t know much about it except how to spell it.

10

I can still carry on a conversation, DMark, with the exception of forgetting a word every now and then, and stammering/stuttering sometimes. Writing threads/posts is an effort, especially with the Parkinson’s, because my fingers are very likely to hit the wrong key or two at once. Here, I have spell check, but on Bike Journal I don’t, so I get D. to edit for me before posting - same with the blog…

DMark, my life is in such financial turmoil right now, that I am constantly focusing on how to get out of that, and I worry - so I guess you could say “the here and now”, because it is that which keeps me from sleeping without some kind of mild sleep-aid.

New thoughts? Well, not as ofte n anymore. I have reams and reams of paper where I have started writing something, but then got writer’s block.

New ideas , is closer to the mark :), I think, but those ideas relate back to getting myself out of the mess I’m in, so there we go back to the “here and now”.

The old days? I remember things from then, but I am trying so hard to focus on not screwing up in the here and now, that I don’t go there much anymore - although I do plan to start my memoirs.

I like to come here and participate, because it makes me pay attention and respond appropriately, although some of the mods can tell you there have been times when I did not. :slight_smile:

Same reason I like to play World of Warcraft: it keeps me focused and my reflexes tuned.

I have Early Onset Alzheimer’s, and that means I still have much of my cognitive ability. It’s just my memory that sucks. That and the Parkinson’s.

And to sum it all up, I have become somewhat of a recluse, because when I do go out in public and if per chance I meet a former patient (I used to work as a respiratory therapist before all of this), they’re likely to ask me where I’ve been, and that opens up a can of worms I’d rather avoid.

It’s a lot to deal with, DMark, especially since I am physically very healthy, and that’s why I get angry sometimes. When I tell people I have EOAD, their first response is to laugh, because the Bill they used to know was such a joker. It’s like they’re waiting for the punchline, but there isn’t one. Wish there were.

This is probably TMI, isn’t it, but I thank you for being interested enough to pose those questions, DMark. It’s nice to know I have friends who care enough to ask, and I wish more people would ask! Believe me, you cannot offend me with questions about my EOAD! I am an advocate with my local AD chapter, and part of my job is to educate.

In keeping with that thought, I think I’ll start a thread called 'Ask the guy with Easrly Onset Alzheimer’s" and say that you inspired it. :wink:

Once again, thanks so much for posting, and please continue to ask. It’s “therapy” for me - so you really are helpng me.

Bill

PS: Sory about the length! :wink:

11

Just popping back in to say that I know someone who takes Lamactil and she thinks that it works well.

12

Thanks, NinetyWt! Maybe it will do the same for me. Just hate waiting for a month for it to get into my system.

Since I am no longer working, I am paying COBRA premiums month to month until my disability starts (whenever THAT is! :(). With the COBRA the med costs 50.00. Without it, 280.00, and that’s just for a 30 day supply.

I am planning on seeing if the drug manufacturer can cut me a break on the cost…

Mama Zappa: My disability is coming through Social Security, and I have those Binder & Binder guys on deck to represent me once I get my first denial. I will have to go see one of SS’s docs to be evaluated, and that’s a bit worrisome because that doc is going to pay more attention to his contract with Social Security than to me and my symptoms.

I know. I’m in for a looong haul, huh? :slight_smile:

Thanks

Bill