Monday, October 27, 2008

Namenda Side Effects

I am currently on my third week "loading dose" of Namenda, (that's 15 mgs a day) and although I was hopeful there would be none of the side effects of the Aricept, it appears that now I am experiencing the famous "flu-like" symptoms so many of those commercials warn us about.

It began Friday afternoon when I noticed a "stitch" in the center of my back. Not there continuously, but there when I'd move a certain way or sneeze.

"Pleurisy", I thought to myself, and prepared to "ride it out" with some Tylenol (which I already take for my arthritis). Pleurisy is an inflammation of the lining of the lungs (the pleura) and it usually goes away in a few days. I get it often when the weather gets cooler.

Having to work this weekend, I just thought I'd take things easy and just "brace" myself when I had to move that certain way or sneeze.

Wrong.

I awakened Saturday afternoon with a stiff neck, a headache, and sore leg joints, and felt like I'd just run a marathon with no training.

It got worse on Sunday, and now, with about an hour left before I get off from work, all I wanna do is go home and go to bed and sleep for a week. No fever, no chills, just a very sore and stiff body and headache. Nothing to do but let it run its course and take some thera-flu.

Hope you're doing well, wherever you are.

Bill

Sunday, October 26, 2008

Alzheimer's and Dementia: What's The Difference?

Many people think they are one and the same, but in reality the two are very different.

I'll give you the "quickie" answer:

Dementia is defined as the inability to do things you were once able to do. Think of dementia as a symptom and Alzheimer's as a cause. In essence, then, Alzheimer's causes dementia. A stroke can cause dementia. Parkinson's Disease can cause dementia. This means that dementia without a cause is not really a diagnosis, and Alzheimer's is the cause of dementia.

As mentioned in the last blog entry, AD is the impairment of memory, language and behavior due to brain tissue abnormalities. I encourage you to inform yourself of "All Things Alzheimer's" by visiting sites such as http://www.alz.org/ and take the "Brain Tour" which is a very good way to learn about the brain and AD.
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In other news, it's my intent to describe some of my own symptoms as it occurs to me to do so, and maybe you can relate to some of these as well.

1. When carrying on a conversation, sometimes a word will "fail"me. This can be a common word or it can be a medical term (with which I deal almost daily). Very aggravating and embarrassing, especially when the person I am speaking with is another medical professional.

2. One of my favorite pastimes is reading, and I have a voracious appetite for novels. I can finish a Stuart Woods (lots of dialogue) in a day, and it isn't unusual for me to read 2-3 books a week - kinda like changing the channels on a tv.

Because I tend not to retain the material I read, I sometimes will buy the same book twice. VERY aggravating and expensive, but I have a deal with my bookstores where I just keep the receipt and I can then swap for another one of the same value or apply the cost to a more expensive one. It makes it doubly difficult because I have to travel a ways to get to my nearest bookstore. This has led to me making a "reading list" and carrying it with me when I go to buy books. This would not have been the case a couple of years ago.

In order to better retain what I read, I have become something of a "Beethoven Scholar". he has long been my favorite composer, and in order to stay focused, I am reading about his life, his compositions, and his own problems with dementia late in life. It really helps to be able to speak about one of my favorite subjects, although I think that the people who listen to me talk about LvB are doing so out of kindness. ;)

That's it for now. Have a great week and be safe.

Bill

Saturday, October 25, 2008

Inherited Alzheimers?

You may be carrying the gene for it, which means you got it from one of your parents. Yes, it is rare. The last study shows 5% of those with AD may have acquired it from a parent.

Both of mine had senile dementia before passing away in the 90's. Could it have been Alzheimer's? They were never diagnosed with it, but I suspect it was - although senile dementia and Alzheimer's are two very different diseases. More about that later.

Before I link you to a very important study concerning Inherited Alzheimer's, you may be interested to know that the disease was actually discovered over 100 years ago, by Alois Alzheimer, a Bavarian physician who examined the brain tissue of one of his patients who had exhibited progressive problems with memory, language and behavior. Neurofibrillary (pronounced NUR-o-FI-bri-lair-ee) tangles and neuritic (pronounced NUR-rit-tic) plaques are the technical descriptions of these changes.

Most of you (as I was) are probably surprised that the disease was discovered that long ago, right? But researchers predict that global prevalence of Alzheimer’s will quadruple by 2050 to more than 100 million, at which time 1 in 85 persons worldwide will be living with the disease.

If you have early onset AD, here is the link for the study being conducted for Inherited AD: http://mednews.wustl.edu/news/page/normal/12060.html

If you are interested in participating, send an e-mail to : participate@dian-info.org

Thanks for reading and come on over to the AD Message Board at http://www.alz.org/index.asp for some support and TLC.

Choose the section called Living With Alzheimer's and scroll all the way down to the end of the drop-down menu.

See you next time

Bill

Bill

Times When I May Not Be So Lovable

Many of the sites I mentioned previously talk about the personality changes one undergoes with AD. Not everyone will understand and that is something I understand very well, especially recently. My family is supportive, but as far as a "significant other" (are they still calling them that?), there is not one, and I would have to think very hard about asking someone to be that for me given the fact that this is going on.

Would it be fair to her to put her through those changes?

This is something I hope to address by reading the AD message boards.

On another subject (and back to the subject of supplements), you may want to check out the benefit of taking Turmeric which has many healing properties. I take it combined with Bromelain and Boswellia in capsule form three times a day. It has been linked to helping with anxiety, mental derangement and a number of intestinal problems including flatulence (!) which is a common side effect of both Aricept and Namenda.

This isn't intended as a recommendation of Turmeric for you without checking with your doc first - just a suggestion to educate yourself as to its properties.

AD Links

Spinal tap is scheduled for November 7th. One thing I can say about my neuro guy - he is leaving no stone unturned, and he knows me well enough to know that I am conversant with what's going on and he speaks plainly and without soft-pedalling anything.

The weekend was uneventful as far as any symptoms or anything out of the norm. Only a few people know about this, which I do not think will always be the case. I don't talk about myself with that many people......

Here are some helpful places for more information on Alzheimer's.

Alzheimer's Association: http://www.alz.org/ 1-800-272-3900

Alzheimer's Disease Education and Referral Center: (ADEAR) http://www.alzheimers.org/ 1-800-438-4380

Alzheimer's Foundation of America (AFA): www. alzfdn.org 1-866-232-8484

Administration on Aging (AoA) (Department of Health and Human Services): http://www.aoa.gov/ 1-202 619-0724

The National Family Caregiver Association (NFCA): http://www.nfcacares.org/ 1-800-896-3650

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The last entry being the one for your caregiver to visit for support and AD education.

If you live alone (as I do) you may want to have someone check on you via the phone regularly. I have a brother who will do this for me, and he and I will work out a few questions he can ask to gauge my capacities.

Above all, one must remember that this isn't a reason for lying down and giving up. No, there's not a cure, but research is ongoing and there's a very good chance that the medication one is prescribed will be all that is needed to help with daily activities.

Counselling is a great way to get help if one needs a little extra.

In short, avail yourself of all support. You need not be alone in this.

Till next time.

Bill

Wednesday, October 22, 2008

Supplements?

Am there. Doin' that.

I take supplements for everything. You name the ailment, I got the supplement for ya'!

Arthritis? Glucosamine Chondroitin, Calcium.

Heart? 81 mg aspirin, and to support heart health and stamina, CO-Q10 50 mg, Fish Oil, Potassium

Prostate? Saw Palmetto

Do you get the idea? That's only a fraction of the vitamins and supplements I take 3 times a day! They are like a meal all on their own, there are so many! (for a complete list of EVERYTHING I take - supplement-wise - send me an e-mail)

"Yeah, but do they work, Bill?"

Who the frigg knows, Dude????

All I know is that I got to be 58 years old, have arthritis (rheumatoid and gouty), am depressed
(well, DUH!) , but am otherwise in the best of health.

Tell you what: I'll stop taking them and we'll see, okay????

NOT!

Even if they were all placebos, I'd still take them, because I believe they work, okay?

Which is why I am so pissed that my mind has decided to take a permanent leave of absence!

What - I didn't do enough Sudoku, didn't score higher than GENIUS on my IQ tests - didn't exercise my brain enough - and now said brain is going to say "bye-bye" and now I have to start shopping for Depends???

No! I will not go quietly.

Beethoven didn't, and neither will I!

Bill

Tuesday, October 21, 2008

World of Warcraft

At the suggestion of a friend, and to keep my memory sharp, I have begun playing WoW, a role playing game, and I am enjoying it immensely.

In addition to riding my bicycle, reading and playing guitar, I am staying busy and doing things I enjoy doing anyway, so I tend not to dwell on the AZ too much.

Also. recently I have begun spending time with my grandson Julian and am starting to teach him a few chords on the guitar. I find this very enjoyable as well. He's a very bright kid, and I find myself looking forward to his next visit with me.

I suppose what I am trying to convey is that keeping busy and occupying my mind creatively is a kind of self-help program, and in addition to the Namenda (10 mg a day), I hope to stay "ahead of the game".

The dysphagia hasn't reared its ugly head in the last few days, so I am hoping that this was a transient thing.

One thing I have noticed is that I am repeating myself either with questions or statements. Last week I told a joke to a friend I had told the week before. He was too polite to mention it, but I remembered it after the fact.

Also, I am hearing the phrase, "Don't you remember? I told you that.... blah.....blah....blah" a lot more often now. No problem remembering things that happened years ago, but if you told me something 30 minutes ago, there's a good chance I didn't retain it.

Monday, October 20, 2008

The Work Weekend

It's Monday morning and I am about to finish my third 12-hour shift, with the next four days off.

It is at work where I feel the most comfortable and least forgetful, because for the most part my work is routine, although I never know what may come through the ER.

By the time I get in at 7 am, I am too tired to do anything but sleep, so the AZ isn't as much a problem at those times.

It is while I have my days off that I must write things down and do them as listed, or else they won't get done.

I will add to this blog also during my days off and note those things which may be important.

Bill

Friday, October 17, 2008

"Where To, Bud?"

"Well, who wants to know?", I thought to myself as I pondered the name for this blog.

Could be a taxi driver or it could be Charon, the infamous ferryman of the mythical river Styx, waiting to take me and my soul across its dark waters.

Okay, a taxi is a familiar thing - it is a car and I have been in cars. I have also been on roads which usually have a finite beginning and ending: a destination, as it were.

I have also been on boats and on the water which carries them, but here there's a little more navigation involved - and much more danger, I think.

Never one to take the easy route, I decide on Charon and my answer to him is:

"The Elysian Fields, if you please, dark Dude. Hades if we must, but for now how about you just get me to the other side, and let's figure it out from there, okay?"


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So let's leave these two travelers (one of whom knows where they're going, the other one just hoping........) for a while.

I'm Bill, and a couple of months ago I was told I have Stage II (Early Onset) Alzheimer's. If you're not familiar with the stages, stage I is no symptoms at all and Stage II is described as very mild impairment, and so forth and so on. (Are you getting the feeling that I am not ready to tell you about the other stages? You may be right .)

So the testing begins - well the testing...... there is no definitive test for Alzheimer's yet, so we're all just stabbing in the dark hoping to catch it before it progresses to the point where we can say, "Oh yeah, definitely Alzheimer's. Can't you tell? I mean look at him all droolin' and stuff. Yup, it's the ol' AD, fer sure!"

Well if I am able to articulate at that point, I might say, "Well no shit, Sherlock!" So it's when when we finally get to a stage where it's too late that we finally get the "full-blown" diagnosis, and then there's no cure, just something to help the symptoms.

So to get back to the subject: the tests begin. First an MRI of the brain, then some cognitive tests to determine my mental status.

First the MRI: Normal. No evidence of a stroke or injury. Good, so we got that out of the way.

But I have some problems with the cognitive testing. Not the "I want you to remember these three things" part, but the drawing of the figures. I cannot get them right to save my life. Also I have trouble telling my neurologist where I had the MRI done, and it was just the week before.

(This may be a good time to mention that I did not self-diagnose. I have had short-term memory loss for three years and it was steadily getting to the point where I would forget ordinary words in the middle of speaking a sentence. It was then I took the "10 Symptoms" test, and determined I was in all of to some degree.)

After the MRI discussion, my neurologist put me on Aricept 10 mg once daily. This was some bad mojo, because after it got into my system it caused me to have "dry-mouth" so bad I woke up one night unable to swallow, and as I stumbled to the fridge for water, I was convinced I had had a stroke.

I think "Dry-Mouth is too weak a description for what happened to me that night.

Try "Scare The Shit Out Of You- Mouth", and you'd be closer to the mark and the way I felt that night. I went through 8 bottles of water before my dysphagia (the correct medical term) finally let up and I could swallow normally again. It was the only way I could keep my epiglottis open.

The next day I called my doctor and he told me to stop the Aricept. I resisted the urge to "Duh" him.

Next an EEG to test for seizure activity and Parkinsons. Although I do have mild tremors, we think they are related to some other meds and not due to Parkinson's Disease.

Next another scrip. This one for Namenda, a loading dose of 5 mg for the first week (now) and then 5 in the morning and 5 in the evening and so on.

Well, what do you think happened that very first day?

That's right: STSOOYM, and here we go again with the water and the almost-panic attacks from not being able to swallow.

I can see I am in for a very interesting time with this medication, but I am willing to give it a fair try. Working in the medical field as a respiratory therapist, I am well-acquainted with patients who are non-compliant with their medications, and since a very close friend (an ER physician)told me I had better be pro-active with this, I want to do everything I can to turn this around if I can.

Elizabeth K├╝bler-Ross is the physician who authored On Death and Dying and The Five Stages of Grief as the phases we go through faced with our own impending death.

I jokingly told a friend I believe I went through all 5 of them the day my neurologist gave me the news he thinks I have Stage II.

So how am I taking all of this?

Well of course I'd much rather be immortal, but then I would need all my other friends and loved ones to be immortal too and I don't think they'd have as much fun with that as I would! :)

I have decided to approach this with the curiosity of a child or an explorer, and see where it leads me. I don't even have a "game plan" other than just writing down my thoughts here. But I'm avoiding that question up there, aren't I?

"How are you taking all this, Bill???"

I'm scared. At 58 with a very healthy body, I am not ready to let it all go yet. I want to be a burden to my son and grand kids, I want the opportunity to be a dirty old man and pinch ladies' butts without getting in trouble for it, just being told , "Oh isn't he just the cutest thaaaang?"

I feel about this the way I felt when I did my first sky-dive. Scared to death - before the jump, but out in the sky, no longer afraid. "Well, you're out here. You can either scream or enjoy the ride down. If the chute opens - great, you walk away. But if it doesn't, wasn't it a great ride down?"

Well, I'm "out here".

Next thing to do is a spinal tap to check the fluid and see what funky things may be growing in my brain that are causing all of this short-term memory loss, if any.

Then we'll go from there I guess.

I want to end this first entry with two things. One is a theory and the other is asking a favor.

First the theory:

What if Alzheimer's is nature's way of taking us back? As infant-like as when we arrived?

Think about it: Weren't you just as happy as a pig in shit floating around in your Mama's warm amniotic fluid, and didn't you resent that doctor slapping you on the bottom to introduce you to that first breath?

Yeah, I'm joking, and that's another way of dealing with the stress of not knowing my future.

So is there some kinda gene that's just now evolving whose job it is to take us back to infancy, and is it just in its beginning stages and that's why we're trying to "cure" it - because we don't yet know that this is its purpose? We're messing with something rather than letting it evolve on its own?

Anyway, that 's my theory.

Now the favor:

If you know someone going through this and you are close enough to them to listen to their symptoms, don't say goofy shit like, "Oh I do that!!!!"

Just listen to him/her and be supportive and helpful. It really doesn't help to say that to someone who is taking what is happening very seriously and is scared out of their minds wondering when they may not know who you are.

That's it. 'Welcome To My Nightmare" and let me hear from you, pro or con. I'd like to know that I'm not in this alone.

Thanks

Bill
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