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Wednesday, August 31, 2011

Monday, August 29, 2011

Doin' The Horizontal Boogie (RLS- Restless Leg Syndrome)

This is 2 weeks running I haven't been able to sleep because my brain's telling my legs to do a 50-mile triathlon while flat on my back.

Yep, as if I needed one more symptom to add to my list of afflictions, I can now add restless leg syndrome. If you have it too, you'll know what I'm talking about: it's a neurological condition with no known definitive etiology (med-speak for "cause"), but in my case I'm wondering if the fact I'm on three kinds of anti-depressants is causing this.

It's right now 6:10 am and I've slept maybe 30 minutes tonight. For the week, maybe 3 hours, and I'm irritable as hell.

This is nocturnal, so I figure my autonomic nervous system needs a fine-tune with some chemical assistance. (I take so much medicine and supplements now, it's like eating a small meal!).

FAST FORWARD.....

The doctor told me Thursday I'm taking too many anti-depressants, so we cut back the Welbutrin to 150 mg just once a day. Indeed, taking too many anti-depressants can cause RLS, so for the next week, I'm cutting down and see if that stops it. I just hope it doesn't stop me from being a "Happy Boy", because the chemicals sure have helped with the mood swings.

The magic is keeping me occupied, and I am learning some effects I hope to present at our Christmas Alzheimer's banquet. The magicians at genii have been a huge help to me, sending me books and tricks to do, and I'm very grateful.

You know, I'm actually very fortunate to have all my activities at my disposal and it just pisses me off royally that I am so apathetic toward doing them sometimes. I feel like I really need the Namenda, but Thursday's visit did absolutely nothing in that regard, nor in any other. That's all I want to say at this point: it was an absolute waste of time. More on that later.
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I have said from the very outset, that I am going to write about my life as much as I am comfortable with. This would be, after all, my reason for writing it . The symptoms, the results of trying different meds, how I am feeling on any particular day; it is all a part of getting better and being pro active and not reactive. Opening a door into my life, so to speak.

I realize, however, that we are all different, with different degrees of how much they are they are willing to share, but for those who don't feel comfortable who don't want to publicly share it, would you be willing to talk about it anonymously or instruct the person who has your medical power of attorney to do so on your behalf?

Here's why I put this whole thing into italics: In one of the more recent entries I wrote of the NAPA (National Alzheimer's Project Act) bill just signed into law: "Sometimes when you want something and don't get it, it's because you didn't ask for it." I now want to add a word to that sentence. I want to add, "correctly" to the end of it.

A couple of weeks ago, we Alzheimer's Advocates held a meeting to discuss ways to use this law to our advantage. My suggestion was to use some of it to help our caregivers. Give them some time off or give them a little money in order to compensate them for expenses on our behalf.

How else can these funds be used? What? Huh? Sorry, I didn't get that, can you repeat that please?

See what I mean? You can't do anything because you didn't hear me ask.

So we need your voice to help make decisions, and if you get a questionnaire about this subject, please help our Board of Directors by filling it out and let them know what you want!
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For my Magician-Bros'.....


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I wish all of you a great work week coming up, and please help however you can, the victims of Hurricane Irene and please don't forget to click to feed and maybe set yourself a reminder in your calendar to do it every day, thanks.














The Animal Rescue Site

Thanks

Bill
do

Saturday, August 20, 2011

It Takes ALL OF US!!!!

T.S. Elliot wrote: "Footfalls echo in the memory
Down the passage we did not take"

What does that mean to you, my friend?

To me it speaks of regret. Regret for things we did not do, but wanted to. and perhaps not leaving something of yourself behind when it's "your time"?

We all need our "Bucket List". I have mine and have been fortunate enough to have been able to do almost all the things on it. I have no regrets now and will have none when I lose what's left of my mind or go where the dolphins went in the book "A Hitchhiker's Guide To The Galaxy" by Douglas Adams - whichever comes first. Although I do hope Mr. Reaper takes me before Dr. Alzheimer does, as I do not wish to be a burden to anyone, especially my sweet wife.

Okay, enough of that. Are you having a good weekend so far? I am. I hear Dondra puttering around in the kitchen, and it is a sound I crave to hear, because when she's at work and I am here alone, it doesn't just get lonely, it gets confused and frustrated. I don't know what to do with myself. I go into the music room, pick up the guitar or sit behind my drums and then - nothing. The desire to play has left me within about a minute. No desire to read, watch tv, ride my bicycle, jog, you name it and I ain't doin' it.

And that's a sign of Stage 4.

I am, however, as I wrote in my last entry, getting back into doing some simple magic. I just need to shop for some props and then use D as my audience. (Tonight she'll see me levitate (a la David Blaine), so she can critique me. Ha-Ha!
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GOOD NEWS FOR VETERANS IN MY AREA!!!

Carroll County's new satellite Veterans' Clinic is under construction and will serve all surrounding counties! The story is here:

I included this because I think our veterans aren't getting what they were promised and I am wondering how many of us are suffering from Alzheimer's dementia. This is something I plan to research and will let you know as soon as I can.

Think about this though: How many of them are walking the streets homeless right now. In fact, how many homeless are walking the streets with dementia right now?

That is exactly why funding for a cure must not be cut by our government, and we need you to contact your local lawmakers and let them know this!

You know, sometimes you don't get what you want because you didn't ask for it, and that's what we need to do: en masse. Many of them will be running for re-election so pin them down and then hold them accountable by watching their votes. Here is how to track them: http://www.govtrack.us/ and here is how to contact your congressperson: http://www.usa.gov/Contact/Elected.shtml

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A Joke

Originally posted by Marvite from the Alzheimer's Association Message Board:

It was entertainment day at the Senior Center and the amazing Claude, the famed hypnotist was topping the bill. People came from miles around to see the famed hypnotist do his stuff.

As Claude went to the front of the meeting room, he announced, "Unlike most hypnotists who invite two or three people up here to be put into a trance, I intend to hypnotize each and every member of the audience."

The excitement was almost electric as Claude withdrew a beautiful antique pocket watch from his coat pocket. "I want you each to keep your eye on this antique watch. It's a very special watch. It's been in my family for six generations."

He began to swing the watch gently back and forth while quietly chanting.

"Watch the watch, watch the watch, watch the watch."

The crowd became mesmerized as the watch swayed back and forth, light gleaming off its polished surface.
Hundreds of pairs of eyes followed the swaying watch, until, suddenly, it slipped from the hypnotist's fingers and fell to the floor, breaking into a hundred pieces.

"SHIT", said the hypnotist.

It took three days to clean up the Senior Center.

The Message Board, in addition to being a wonderful support group, is a great place for resources, advice and comfort. I encourage anyone with Young Onset Dementia or a caregiver, to take advantage of it and sign up at www.alz.org
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Thanks for reading, as always. Enjoy the rest of your weekend and remember to support our Alzheimer's Association. You'd be surprised at how much they are able to do for us. We don't want to let them down.
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It's time to bring these valiant heroes home, y'all.
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I'd also like for you to remember the many, many people who care for our unwanted pets - both animal control persons and volunteer organizations. They have all had a rough summer and their work is far from over.

Help them out and click this link to help feed a shelter pet, thanks.

The Animal Rescue Site

Bis dann, (till next time)

Bill

Friday, August 19, 2011

Magic, Cycling and Politics: Another Potpourri Day

As a respiratory therapist in the ER, I used to do a little magic for my pediatric patients to help pass the time and allay their fears. I also did a little puppetry with my buddy "Dr. Bob".

Recently, I decided, as a memory booster to get back into it if I could and decided to see if there's a website for magicians. Luckily, I found one on the first try at genii. (Just click on the link above to take you there). I introduced myself, told them a little about me, and the next thing I know I'm being taken under their wing, with suggestions for books free books (thank you JordanB) and tricks I can learn easily. Richard Kaufman, who has written the book Magic Tricks and who runs the site, suggested the use of note cards as a help to me. So I'm going to try to put together a short show maybe for Christmas.

Here's One I showed Suzette when she came for her weekly visit this past Tuesday: The Magic Coloring Book which is one I did for the kids.

.

I'm trying my best to keep busy with different things to help my memory, but it's getting really easy to lose focus.

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Seems like the weather is cooling off a little and time to get the bike ready and do a little cycling on The Silver Comet Trail. I like to ride on the Trail because it keeps me out of traffic and since I had that three-car accident back in April, I'd rather ride where I won't encounter any cars. Another reason is that I was almost killed when I rode the bike from Carrollton, TX to Carrollton, GA last year.

Carrollton and Carroll County really do not have anything to keep a cyclist out of traffic, so I don't mind the trip to Paulding County.

I ride alone because it appears that no one can ride as slowly as me (top speed on flats 16 mph) and so that I can appreciate the trees on either side of it. If you didn't click on the link, the trail is abandoned railroad track which runs from just outside Atlanta into Alabama.

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Now for the politics: We advocates of the Alzheimer's Association are concerned about the national debt and how it may affect the amount of funds allotted for research. We dodged a bullet recently when Congress and the President finally reached an agreement that would leave Social Security and Medicare alone, but we're possibly facing another battle, because Pres. Obama has now appointed twelve members of Congress and tasked them to cut 1.5 trillion dollars off the national debt. Here's the news from my advocate page on the Alzheimer's Association website.

I know I have readers all over the US, so I'd appreciate it if you'd take a few minutes of your time and contact your local lawmakers and tell them not to mess with our funds, thanks.

That's it for this time. I appreciate y'all reading and please remember the animals and click to feed by clicking the button below. Here's an appropriate tune for this entry:



Thanks,

Bill
The Animal Rescue Site

Tuesday, August 16, 2011

Improv Theater For Young Onset Patients!

The poet William Stafford (1914-1993) wrote: "Let the bucket of memory down into the well, bring it up. Cool, cool minutes. No one stirring, no plans. Just being there."

To me, that means "take the pressure off yourself, relax and let those old memories come if they want to." I reminisce a lot these days, and often I have found that the old memories trigger the most recent ones. It doesn't happen a lot, but it does happen. Kinda like trying to think of that actor or actress you like so much, and that name being "just out of reach", and suddenly, when you're not even trying to think of that name, there it is.

We have Young Onset Alzheimer's, NOT death, and these are the days for working our brains and sharpening our cognitive memories. There are all kinds of "brain games" online and advice at your local Alzheimer's chapter to help you get started. If you happen to have a Kindle, there's a game called "Every Word" which I play, where you try to make as many words out of a bunch of letters as you can for a high score. It's free to download, and Dondra and I play against each other all the time now.

In the last installment I mentioned that one of the items of discussion was a support group for those of us with Young Onset Dementia and that this will be on the agenda of those responsible for making that happen.

However, I was pleasantly surprised Monday morning to hear a "Your Health" report on NPR about just that. Please click on the link, and while you're there, please also take a listen to the tape of one of those "Improv" sessions.

It's good to know that the private sector (in this case a theater group) is getting involved in making life a little better for those of us with Young Onset. If you're reading this as a member of a local chapter, why not contact Looking Glass Theater and find out the particulars on how to do this in your community?

More and more of us are being diagnosed with Young Onset, and while some may still be able to work, many cannot and maybe you know of someone who can't and has tried several times to be approved for SSDI (Social Security Disability Income or "disability"). If so, you may not know about the Compassionate Allowance Initiative recently initiated by The Social Security Administration, which will expedite your claim under certain conditions. Click the link to see the list.

If you've already applied and are "in the system" and waiting, waiting, waiting, please don't give up!!!! It took me almost 3 years to get approved (lean years indeed), but it finally happened for me. The link you just visited contains a menu which will lead you to an Alzheimer's bulletin board and I encourage you to check it out, become a member, ask questions and most importantly, keep your morale up and keep you thinking positively.




The unwanted homeless pet overpopulation continues nationwide. If you can, please visit your local shelter and adopt a new friend. If you can't, then please go here
The Animal Rescue Site
and click to feed. There are many pet food companies who contribute food for both dogs and cats and it costs nothing to click the button to help provide for them. Do it! It will make you feel good!

Thanks

Bill

Saturday, August 13, 2011

NAPA Town Hall Meeting 8.13.2011

Just got in the door from this meeting and wanted to tell you about it before it all fades away. First, I'll tell you what we discussed and then I'm going to throw out some "Did You Know's".

Represented at today's meeting were the chapters in Atlanta, and via Skype, those in Columbus, Macon, Augusta, Dalton, Savannah and Tifton. Before things got underway, Kris Bakowski (previous blog interview here) talked to us. Kris is a member of the Atlanta Regional Board, and is on the steering committee of the Northeast GA walk in Athens. There was also a short address via tape by President Obama, during which he spoke of his signing of the National Alzheimer's Project Act (NAPA) this past January and also pledged his continued support in finding a cure. In short, the President acknowledged that NAPA is a good start, but there is much work yet to be done.



Today's session was moderated by Cory Thompson, Secretary of the Georgia Chapter and our format was that each one of us who wanted to address the gathering had 2 minutes to speak.

I know when I mention the major topics discussed by everyone who spoke, I'll be "preaching to the choir" with some of you, but for the rest, my hopes are once you see these subjects, that you not only use them as information, but also to become involved in your local chapter if you aren't already. This is an exciting time for all of us, and since we now have NAPA up and running, we need to discuss how to use it to our advantage. In other words, the foot's in the door, but we need to open that door further in order to follow through if we are to improve health outcomes and lower costs for all impacted by Alzheimer's Disease.

Here are the major topics discussed at today's meeting.

1. Caregivers: in 2010, there were half a million cargegivers nationwide, and you can bet that number has increased in 2011. That half million provided 5.5 million hours of care at an economic valued cost of 6.5 billion dollars - unpaid. Meaning they bore all the expense taking care of their loved one. One of the goals of NAPA is to provide funds to recompense/assist those cargegivers and take some of the financial burden off them. It bears mentioning that many of these folks are unemployed which creates even more of a hardship.


Under the heading of Caregivers, respite was discussed. Many caregivers don't get a break and are not only exhausted and depressed, but in poor health themselves - either already or as a result of being "spread too thin', especially if they happen to have a family which depends on them as well.

2. Education of the public and, most importantly, physicians. Much of the public still does not understand that Alzheimer's Disease is only one form of dementia and tend to group them all together and call it Alzheimer's. The truth is that each form of dementia is treated differently with different methods and medications.

In the case of physicians, many of them misdiagnose or fail to diagnose Alzheimer's at all. Those who do tend to send the patient home and tell them to come back in a year. Although this is slowly improving and AD is correctly diagnosed more than 90% of the time, as many as half of the 5.4 million Americans with Alzheimer's have never received a formal diagnosis.

3. Support Groups for those of us with Early Onset Alzheimer's: There currently is no organized support group, but this will be one of the priorities of our Atlanta chapter. There currently is an in-home counselling program which has been funded by a grant to our chapter. These are the visits you've read about here with my counsellor Suzette. And that's me with Suzette below.




4. Revamping of the Medicare system which currently requires a 2 year wait for anyone with a first-time diagnosis of dementia. This leaves those of us with Early Onset "out in the cold" if we happen not to be able to work.

There were more concerns discussed, but these were the ones which I considered major.

So you see we all have our work cut out for us, but there is light over the horizon if we all continue our efforts as advocates, caregivers and patients. With NAPA being signed we now have a voice, but it needs to be used. We could use you on the team. All you need to do is contact your local chapter and tel them you want to help. Even if you aren't impacted by dementia now, chances are you will be in the future.

Did You Know?
1. Up to now, we've been telling you Alzheimer's is diagnosed every 71 seconds. That just changed. It is now every 69 seconds. That may not be such a big change, but in 2050, it jumps to every 33 seconds.

2. It isn't always the younger family member taking care of the older one. Sometimes it's the other way around. In our group today, we met an 81 year old gentleman who takes care of his 56 year old daughter who was diagnosed when she was 52!!! Do you think he could use a little help, a little respite?

3. Between the years 2000 and 2008, the number of Americans who died from Alzheimer's increased 66%! This makes it the 6th leading cause of death, yet it receives the least amount of funding for research.

You've read about my lovely wife Dondra, but some of you have never "met" her, so here's she is with Suzette and me at today's meeting:

I'd like to end today's blog with a quote by Jim Williams, one of our senior advocates:

"Alzheimer's is the only disease which causes the death of your loved one twice. Once while they're still alive."

Please don't forget the homeless and unwanted animals and click to feed below the video:



Thanks,
The Animal Rescue Site
Bill





Monday, August 8, 2011

Not A Real Good Week Last Week

The forgetting words is getting worse. It used to happen just very sporadically, but now about 80% when I speak and about 30% of the time when I write. "What do you call this thing?", Dondra answers that "it's the thermostat, Bill". Stuff like that.

It's very unsettling and frustrating, especially when I forget the names of my grandchildren. In that instance, I compensate and call Julian, "the little one", and Amber "the 19 year old".

Dreaming of not knowing where I am, and asking myself if this is a signal that things are about to get much worse?

Not being motivated enough to play my musical instruments, play Warcraft or read.

Not sleeping well.

Today, Dondra used some new terminology with me: "I wish you'd let go of that!", meaning I saw some stuff in the freezer in bowls, and asked her if this was some food for her widowed brother that he could heat up?

Apparently, I had asked that same question numerous times this past weekend.

Last Saturday night we went to a birthday party, and as sometimes happens now, I was talking to someone and lost my train of thought and stopped. Dondra had to "cue" me what to say. Sometimes when that happens, folks will think I'm finished and walk away. Guess they weren't listening in the first place.

Going home from that same party, I wanted to use the car charger on my wireless, but couldn't fit the plug into its slot. Dondra hadn't yet learned where the interior lights were on her new car, so she took the cord from me with one hand while driving with the other.

I thought she was going to try to do it herself so I flipped out and yelled at her to "Drive dammit! Don't mess with this! I'll wait till I get home!"
She yelled back at me that she had no intentions of doing that, and so for one of the very few times we ever do this, we had "words".

Suzette came by the house today for our weekly counselling session, and I told her about it, and she says I'm still having some PTSD ("post-traumatic stress disorder") from the three car wreck I caused 3 months ago.

Yea, I suppose that's true, but I have to fight not to be a front seat driver and sometimes Dondra scares me so bad driving my sphincter locks up and my colon pops right out of my ass. So we'll be working on that.

I have also gotten myself a monthly planner calendar in which I will write at least one planned activity daily, such as "guitar for 15 minutes, drums for 15 minutes", etc. The goal being to work up the motivation by using baby steps.

So all in all, not a good week for me and I'm looking forward to a better one this week.

Today, another one of my counsellors, Kathy, who also serves as Advocacy Manager sent me a reminder about Saturday's Alzheimer's town hall meeting. It isn't too late to register, and I hope to see you there.

This is Bobby Long, whom D saw recently on television. I like his music a lot and he is being hailed as the "new" Bob Dylan. See what you think. He definitely has that "folksy" sound, IMO.



Please don't forget the animals and to click to feed them:

The Animal Rescue Site

Thanks,

Bill

Thursday, August 4, 2011

35 Days Till Medicare, Dammit!

That's right, I'm not particularly pleased about that, just as I wasn't pleased when I got that first letter from AARP.

I. AM. NOT. OLD!!!!!!

I know what you must be thinking to yourselves, "You oughta be glad you're getting it, Bill! It'll make things much easier for you, medically."

Yeah, okay. It will make things much easier for me, but I wish with all my heart that I didn't have to be on it, and I wish with all my heart that I didn't have to use it. But I do. I know there are folks less fortunate than me that need it and must be fighting to get it and here I sit, trapped inside this body with a batshit mind which isn't of any use to anyone, especially my patients whom I miss so much!

Lately, I've been getting tons of mail from the Medicare folks advising me on what plan(s) to choose, what it will pay and what it won't.

I've just told Dondra to take a look and choose the best plan for me. Your input is appreciated as always, of course!

I want to remind those of you who are advocates and caregivers of an Alzheimer's Town Hall Meeting which is coming up soon in your area.
Ours will be held on August 13th and here's the scoop on this one:

So please attend if you can. We need to give some input to Congress on what we want, because if we don't they're likely to forget about us, like they forgot about all those FAA folks and left on vacation!

Kathy Simpson, one of my counsellors has asked if I'd speak to any news media present that day, but I think I'll leave that to Kris Bakowski, who has more experience with that than I do.

Another tune from my favorite new goup, 3 Bottles Of Wine:

This is a cute song that features some "back and forth" between Marco and Julia. It's called "Barenaked". I am still hoping to bring them to Atlanta to play. Y'all know I have to have a project going, or I'll spontaneously combust! HAHA!

Remember to click to feed our four-footed homeless:

The Animal Rescue Site



Thanks

Bill

Wednesday, August 3, 2011

A Fellow Young Onset Alzheimer's Patient Speaks

As I did way back yonder, from time to time, I like to feature a guest and this time it's someone who was diagnosed in her 40's. Her name is Kris Bakowski, and if you're a patient or caregiver, I invite you to read her blog as well as this one.

Additionally, if you as a patient or caregiver, want to take a shot at these questions, please feel free. It's all information and that's what this blog's about.

There was one other person I wanted to feature, but after I left a message, I haven't heard back, so if you're out there, please get in touch, thanks.

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Since being diagnosed, what has been the most difficult of your symptoms to deal with and have you begun experiencing different/additional ones since then?


Answer: I have several symptoms that bother me a great deal. The most obvious one to me is the problem with noise. I have a very hard time concentrating in a noisy environment. Restaurants, airports and places like Wal-Mart have way too much stimulus for me. I wear earplugs pretty regularly. My husband is retired and he likes to have the tv set or radio on all the time. He resorts to wearing headphones much of the time because he knows how the noise bothers me. Another problem I have is making change in a store. I get so frustrated. I usually just hand them my credit card rather than dealing with the humiliation it brings me to not be able to make simple change. Symptoms come up all the time, but you have to deal with them the best you can.



Have you noticed a change in your gait, for instance?


Answer: I have issues with balance. Being a rather athletic person this has bothered me since I have a problem playing tennis which I used to love to do. My depth perception has also been affected and makes it difficult for me to drive at night and sometimes stairs can be an issue for me.



Are you still active as a journalist, as a consultant, maybe?


I try to stay active writing buy many times it is difficult for me to write what I’m thinking. I know exactly what I want to say, I just can’t get the words from my brain to the paper. It’s very frustrating. I also have found that words that sound the same but are spelled differently give me a problem (i.e. meat and meet). I know that sometimes I write them, and I know I’m not using the correct word, but I can’t figure out the correct word. I know I have left my husband notes asking him to take the “meet” out of the freezer for dinner. I knew it was wrong but couldn’t find the correct word. Some days when I write on my blog, I have to ask someone to proof read it before publishing it.



Have you taken part in any drug trials?


No drug trials. I tried a couple of times, but was turned down because of my age. I am told that there are not enough younger on-set people to put in trials to make them work I am hoping that with more and more people getting diagnosed earlier this will change.



Out of all the experimental drug studies being done, which one(s) do you consider the most promising?


There are so many things out there being worked on I would be hard pressed to come up with any one. Obviously, I am looking for ones that actually treat the disease to slow it or stop it, than ones that treat the symptoms. But, anything is better than nothing. It seems like there is much more being done in Europe as the approval process is faster there, but I think I may just hear more about what is being done overseas than here.



Describe a day in your life.


My day has to be pretty structured. I try starting out each day by going to the gym or getting some type of physical activity. I play golf once a week although my low concentration levels hurt my game – but it is exercise. Early in the morning is the time for me to run errands if need be since morning is my best time of the day. It is because I am rested at that point. If I go to late in the day to run errands or do things outside of the house, it is difficult because of the increased number of people in the stores and on the roads which plays into my noise problem (as well as concentration). Late morning and afternoon I try to do things around the house and then I rest. I try to nap most days or at least have a quiet time. My friends say this give me an opportunity to “create mornings” since once I’m rested I do better. I usually prepare dinner but if I haven’t rested it is much more difficult for me to do. Evenings are extremely quiet in our house. I very seldom watch television as it is difficult to follow the plot. I try reading simple things such as magazines and try to work some simple puzzles.

I read in your blog that you’re a very athletic person. Has that changed through the years.


Yes, this certainly has changed in what I do. I still try to work out or walk every day – they say what is good for your heart is good for your brain. And, I must say that when I exercise that I do feel better “mind wise” if that makes sense. I recently had my knee replaced and was not doing the types of exercises I was used to and I really noticed a difference in my mental health. I can’t play tennis as I mentioned before. I love to ice skate and even though we live in the south I do get to skate occasionally. So, I try to stay active. I enjoy watching sports as well and will try to go to as many events as I feel comfortable doing.



What’s on your bucket list?


I have lots of things on my “bucket list” but most of them deal with experiences with my friends and family. Hopefully, they will be able to remember these experiences long after I will. One of my dreams all my life has been to go to Australia and it looks as if I will be doing that this fall.



From reading your blog, it sounds like you have a lot of energy. For me, it’s a case of “I don’t know how much “good” time I have left, so I’d better get busy!” How about you?


I probably feel the same way about this. However, I have always been a very busy person and if you ask my friends and family if I am as active as I used to be the answer is definitely no. I like to stay busy but I get so tired (more mentally tired than physically) that it just gets to be too hard. I really have to pace myself. If I have a busy day one day, I know that the next day I need to relax a little. Relaxing was never a word in my vocabulary before so it is something I am having to get used to. Knowing your limits is a good thing.



Do you play any brain games? Which ones?


I’ve recently started doing logic puzzles. I never used to be able to do them but wanted to give my brain a challenge. I still have a hard time doing them, but I try. I do other puzzles and play games online. However, I could never play the types of games that you play on line because they are much too complicated for my brain to wrap around! After I was first diagnosed I got a gameboy and will still play games on that occasionally for something different. But I just can’t play those other complicated on-line games.



Do you “compensate”?

I compensate for my Alzheimer’s every day. I didn’t realize how much I did it until a friend of mine started asking me some questions regarding my every day life. I realize that a lot of my “changes” have taken place gradually and they are now “normal” to me so they don’t seem like I’m compensating any longer. When I find I can’t do something I’ve come to accept it or come up with another way. For example, I can’t go to the grocery store after about 10:00 a.m. because of the noise. So, I either go early, ask my husband to go or ask him to come with me. I adjust all day long. I realize that I have a problem crossing the street by myself. When you think about it, nowadays, you really don’t cross the street that much unless you live in a big city. You usually drive to the grocery store’s parking lot, or pull right in front of a store. But, when I do have the occasion to cross the street, I try to have someone with me. I don’t necessarily trust those walking along side me (if I don’t know them) because they may walk at the wrong time and I wouldn’t have enough time to get across My problem crossing the street comes from too many visual signs at the same time. I see the crosswalk sign and the street light at the same time. When one is green I get confused as to whether that is for me or the cars. It all becomes very confusing. Simple things can become the hardest things to do sometimes. Some days I’m just not having a “good day” so I may have to cancel plans with friends or just take a rest and do something tomorrow instead of today. “ Normal ” has a new meaning every day.
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Thanks, Kris, for that very candid interview, I'd also like to add that Kris is one of our very outspoken advocates and was with us at the Advocates Forum in Washington DC. She never misses an opportunity to speak on behalf of all of us and is always the first in line to help. Dondra and I are proud to know and work with her.



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