The Trip Over
Notes on the road to Alzheimer's
The Trip Over

Testing... testing...

I'm slipping. I sit in front of my computer every day, reading mail and, occasionally, writing back. Before I know it, a week flashes by and I haven't checked my blog and, worse yet, I haven't written anything.

I just went through my psychometric testing again; a yearly event. It's 3 or 4 hours of memory and cognitive testing with word games, puzzles and stories. It's very humbling. They are trying to see if my mind is going. Of course it is but they want to measure it.

Oh well! Life is full of bench marks. This is just the latest.

Summer rushes in

We're in the home stretch for our grandson, Kevin's, wedding. Just a little over a week away. We're planning to drive up the coast to the Los Gatos area, south of San Francisco next Thursday.

Hard to imagine that we have a grandchild old enough to get married. Life flashes by when I'm not looking.

Played in a Rotary fund-raising golf tournament last Monday. It was a foursome, best ball and we had two good golfers in our group and won! It was fun but wore me out.


Practice makes perfect

Like every Thursday (almost) I got up early and went to play a round of golf at the nearby course. It's a very short course... mostly 3 par holes. I play with a bunch of old codgers like me, retired doctors, bankers and businessmen. There is only a couple of them in the group that can really hit the ball. The rest of us kinda' beat at it, tear up the grass and swear a lot.

Afterward, we go to LuAnn's, a nice little cafe' nearby. We hassle the waitress and eat too much but it's fun and Jane likes to get me out of the house.

I think I shot a 93 or so today. I keep trying to break 80 and have once or twice. I've decided golf is like most sports; if you don't learn them when you're young, you'll never get good at them.

Messy desk, messy mind

I'm sitting here starring at this blank screen, trying to get my motor running. I've been less than inspiring in my blog entries these past few weeks. I've lost all motivation.

It's not that I have nothing to do. I just found a copy of an email buried on my desk that reminded me of a talk I am to give Sept. 26. I have no Idea what I'll say.

My desk is a reflection of my mind; a mess. Every time I get a new ID and password from a web site I write it on a sticky note and  tack it to the wall in back of my desk. Now I have 30 or 40 in a mish-mash . . . no order and no design. Most of the time I can no longer find the one I want.

To make it worse, mixed amongst the sticky notes are appointment cards from the various doctors I see. In addition, I have a few pictures, scribbles notes and addresses. It's not a pretty sight.

I'm going to have to do something about this, one of these days.

Wishfull thinking

I've come to realize that I'm much less 'conversational' than I used to be. Jane will poke me and whisper, "say something." I'm following the flow of words OK but I just can't think of anything to say.

I've noticed how hard it is to remember names and facts and I've wondered if I'm trying to avoid the embarrassment of missing a beat in my conversation. I know I've had to stop and struggle with those kinds of things on many occasions; and they are getting more frequent.

I keep hoping that, maybe, the doctor's have made a mistake and I'm not going to fade into dementia. I know better but who can blame me?

The fickle hand of fate....

I started back to my volunteer work at the North Coast Ecumenical Center today. I'd stopped for my hip surgery but now that I'm walking ok I thought I could handle it.

The NCEC is an organization designed to distribute food, emergency funds, clothing, etc. for those out of work, homeless and such. Jane goes over once a week to distribute food and I do data input for statistics. Some of the food comes from the Federal Government and they need statistics.

I spent a couple of hours inputting names. The details of why they came in are on the work sheets I copied from. They were all just ordinary folks; some had made bad decisions and choices (drugs and crime) but otherwise, they were just like you and me.

When I see things like that, it makes me stop and wonder at how I got here... luck? accident? I imagine if I stood in their shoes for a day, I'd appreciate what I've got a lot more!

Rocking the ship...

Several months ago I was seeking to get into new drug studies for Alzheimer's Disease. I've since given up on that because I don't fulfill the criteria for the diagnosis. Anyway, in the middle of all that, I went to see Doctor Galasko, the head honcho in the neurology department at the University of California in San Diego. I have seen him several time since then and I didn't tell him I had seen Dr. Berkowitz.

I also had not told Dr. Berkowitz that I was seeing Dr. Galasko. Yesterday, I went to my regular appointment with Dr. G. Jane wanted to go with me so I told her that he did not know about Dr. B and didn't want her to mention him. She was uncomfortable with that and decided to stay home.

When I got back, I told her that Dr. G told me to stop my two Alzheimer's meds; Aricept and Namenda. This really made her nervous. This morning, I got a call from Dr. Berkowitz. Jane had called him and spilled the beans. He insisted I call Dr. G's office and ask him to call Dr. B. As you can imagine, I'm not very happy about all this. I feel like a child who has been caught with his hand in the cookie jar.

If you hear of a retired doctor arrested for beating his wife, you'll know who it is.

Plugging along

I tried to play a round of golf today, the first since my hip surgery. I made it through nine holes and was so beat I had to come home. But, it was fun and I didn't hurt, I was just tired. 

I'm a little surprised. Jane and I have been going to the gym rather regularly or walking a mile or two. You'd think I could make 18 holes, no problem.

I love my new computer but still getting used to it. It is lightening fast compared to my old one. Has lots of bells and whistles which I don't know how to work... yet.

A tribute to Frank Webber

I got up this morning and Jane informed me that Frank, my dear friend who had advanced Alzheimer's, died last night. I regularly took him on an outing every Thursday morning but had not been able to since my surgery in February. Two weeks ago he became quite ill with a kidney infection and was hospitalized. They released him to a nursing home just a few days ago.

I'll miss his stories, all related to his life before WW II when he had been sent to school in Germany and events when he was in the army in England. He idolized his father who, due to his Alzheimer's, he came to believe had just died and told me so, the first thing every week.

I'll miss Frank. We had a lot of good times riding around north San Diego County and sitting over lunch or a cup of coffee. I knew all his stories; I'll miss them too.

HBO Special on Alzheimer's

You might remember my writing about the HBO special series on Alzheimer's. Jane and I had been filmed for one of the segments but they developed too much material and had to cut us out. Anyway, it is now being shown and you can view it, even if you don't have cable access to HBO.

Get on the internet with your computer and go to www.HBO.com.  At that site you will see an option to click on 'Documentaries' or a flag titled 'Alzheimer's Project.' There will be a list of four programs. You can watch them in sequence. Each are an hour (+ or -) long. 

They are wonderfully put together and will teach, inspire and move you in many ways. I urge you to take the time to watch them all.

Walking on eggs to retirement

Hey Jan! The water's fine. Jump on in.

I know you've been sticking your toe in the retirement pool for quite a while but now it's time. A bit scary. But you can do it. I did and I've never regretted it.

We observed Mother's day today. I took Jane out to lunch with other members of our church. I ate too much but it was fun.

It's Been a While

It has been a bit of time since my last posting here.  Life has been a bit more hectic here than I might like as I advance, unswervingly, toward retirement. 

As I catch up with Don and Jane's life there, it is good the 'ol Bro is moving pretty well once again, has the wheels back, I think, and a new laptop... life is good.  We are well into Spring here in the plains, tornadoes, rain, the usual spring stuff which we just live through week to week.  I am in my last month doing this clergy thing, and that feels really good. 

I'm looking forward to new adventures, maybe a bit more time to do some writing - mostly for my own enjoyment.  It is intriguing the number of stories which I have stored in my skull, little vignettes of life which have a bit of an edge to them.  I can't help but think my daughters, sons-in-law, grandkids, even my spouse, Connie, will find them the most exciting reading of their lives!! 

It also has been a trip to do all this pre-retirement paper work to line up pensions, ponder how many bucks we'll have - will it be enough?  Also the actuarial  reality that the statistics say I'll live 20 more years - a bit like having your future laying out before with an actual end being seen.  Those graphs they send you show the life curve moving to 85 and then charging downward into the dumper!  Good grief!  It does get one's attention!  It's one of those profound moments when you hope you beat the odds. 

And, since Don mentioned the Padres.  Hey, everyone, the KC Royals actually are playing decent baseball.  As I write this, I have to confess they are in Anaheim getting kicked around by the Angels.  Up to now it's been good.  Enough.  'Til next time. Jan in Kansas. 

Losing weight... Ain't it Great!

Dieting is a pain. Jane and I have been on the Nutrisystem diet for over 3 months now. I've lost 15 pounds and Jane even more. I'm happy with the results but I'm sure tired of the effort.

Really, I shouldn't complain. I've been on more boring diets, but still................  This one provides all the food in packages to heat and serve. There are some things that aren't provided, like veggies for salads and fresh fruits. Everyone says I'm looking pretty good, so I'm going to stick with it.

Jane and I are going to a Padre baseball game this evening. It's an outing sponsored by the Alzheimer's Association. They are playing Colorado. Go Padre's!!!

I don't miss the footlights

If you follow this blog, you might remember the entry several months ago about an HBO crew who came and filmed a segment for a series on Alzheimer's they were going to air this summer. Well, we've found out that we can see a preview of the show next week in San Diego. The down side is, they notified us that they had to edit out our part and it is lying on the cutting room floor.

So it goes. I think they probably found that others they interviewed had a more compelling story to tell.

In fact, now that I think about it, it must have been a year ago. They followed us over to our tax accountant and filmed our session there. That was over a year ago.

Last year I did one or two interviews like that every month. I don't get many of those kinds of 'gigs' any more, now that I'm not on the national Early Stage Alzheimer's Advisory Group. It's OK. I had my shot.

A time to whine...


Boy! Time flashes by when you're not looking. I just realized that I've missed writing an entry for a week!

I have no excuses. I've been doing absolutely nothing. My physical therapy sessions for my hip are ended. I can now walk without a cane or limp (almost). I've been sitting around staring at the walls. Not very motivated. I think I'm a bit depressed. What's new?

Depression is always there, lurking in the shadows. A change of medication often helps but not for long. I try to ignore it. That doesn't work very well. I guess I'll have to talk to the doctor again. I'm running out of antidepressant options.

The problem with depression for me is the lack of motivation. I can't make myself write or socialize or exercise. I just sit and mold. At the end of the day I look back and see nothing accomplished... ugh!



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This and that

It can't decide if it wants to be winter or summer. This week started out with record breaking heat and now it's cool and breezy. Oh well, variety is the spice of life.

I've been enjoying my new computer. It's so fast I can't believe it. It has a lot of bells and whistles. I've looking forward to watching some dvd's on it. It has a big screen so it should be fun. 

I'm back to driving a car again. I've really missed the freedom that provides. In fact, I've got to go get a haircut so I'm going to cut this short. Bye.

There is a spook on the web

I've been checking my blog statistics... the number of 'hits' per day or week... and something weird is happening. For 6 days I get 100+ visitors. On the seventh day it jumps to 350. Why is that?

I've had spells over the years where I'd get a thousand or two hits a day for short periods after my name had come up in the news for something. Nothing like that has happened lately. This strange, weekly bump  is something I can't explain.

I'm typing this entry on a brand new laptop computer. Brought it home yesterday and just got on-line. Couldn't figure out the  password for the router. Finally had to call the "Geek Squad" at Best Buy who installed our wireless setup 2 years ago. They had it in their records.

Got my right eye lasered today. I've been having trouble reading fine print and my ophthalmologist thinks I've built up a membrane over the surface. It's the eye I had operated for cataract a couple of years back. Anyway, I had to sit still while he zapped my eye about 40 times. Didn't hurt but wasn't pleasant.

Just news

Jan expressed his doubts that he could have made it through med school. There's no doubt in my mind that if I could do it, anyone could. But I have to admit, you have to be willing to pay the price. I know one thing, having done it once, I'd never do it again. 

We're in serious need of rain in S. California. It seems to happen every 10 or 15 years. And, as our population increases, the drought becomes more critical. We're about to face water rationing. Politicians have dragged their feet in converting sea water to potable water. That is the only available source that is plentiful. All kind of ecological issues, however, and it is expensive. 

My computer is on the blink. It keeps turning itself off after being on for a half hour or so. I think this happened to me in the past. As I remember, it's a sign the fan to cool the computer is wearing out. Better get it fixed before it blows and ruins my data.

 

Coming to KC

Don mentions his KU Med School reunion which I believe will happen here in KC this Fall.  It will be a chance for little bro to visit a moment or two with big bro and Jane and that is always nice. 

I vividly remember Don and Jane's years at KU Med.  A great school and teaching hospital here in KC, Kansas.  In fact I was just over there yesterday visiting a parishioner who is receiving care in the hospital side of things.  It has grown into a huge institution.  

It was a big deal when our Mom and Dad and little Jan could come to KC and visit.  Don and Jane always had some neat thing we could do for an outing.  Like the old Kansas City Athletics (who eventually escaped to the warm confines of CA, Oakland (!)) As a small town kid who loved baseball, I was able to see the old Yankees ... Mickey, Yogi, and all the rest ... and Ted Williams as well with the Red Sox, all on the same weekend.  Don got us tickets.  It was a high point of my young life .                                                                       

There was also a Thanksgiving when we all came to KC, with Jane's folks who lived in Parsons, KS.  D & J lived on Wyoming Street in an apartment, not far from the Med Center I believe.  About mid-afternoon it started to snow.  By the time we got on the road, it was a raging blizzard.  We made it home about 11 pm.  This was before interstates, highways out here in the plains were two lane deals, up and down hills.  It was quite an adventure.  We were on the farm by then, and had to get the old cows milked after we made it home.  Finished well after mid-night as I recall.  The Good Old Days. 

I also had designs on becoming a doctor.  Following in big brother's footsteps, so to speak.  Problem was, I didn't have it in me, not even close.  Organic Chem at KU spelled my doom.  That and too much party-time, too many nights!  It all worked out I think.  Often wonder if I could have made the grade if I had just studied, a little bit!!  I doubt it!  From Kansas.  Jan

A 50th reunion

Last week I received an invite to my 50th med-school reunion. (Yes, I graduated from med-school in 1959!) I'm determined to get there to see all those old men and women who, like me, were shinny eyed idealist back in the 'day.'

You'd think that memories of medical school would become idealized in glossy pastels. In truth, it was a period of endless stress and sleeplessness. Medical students were one step below the janitors in respect and were never supposed to complain. The theory was, the harder the road to an M.D. degree, the better. The diploma came with mental and physical scars.

A reunion with that kind of background is much like a military unit reunion. You have to suppress the memory of the blood and guts of battle to make it a happy occasion.

There goes Peter Cotton-tail, hopping down the bunny trail...

The rush of Easter is past and I can begin to settle back into my old routine again. I continue to sing in the church choir and we were having two rehearsals a week in preparation for the services on Palm Sunday, Maundy Thursday and Easter. Jane was busy at the piano as well, making her own beautiful music and accompanying the singers as well. So, that is over.

Now we have all kinds of doctor's appointments lined up over the next month. Time flies when you're having fun.

Actually, I make it sound like we're out the door and driving somewhere every moment. That's not true. It is just that we're doing more than we want. Like Forrest Gump said, "Life is like a box of chocolates. You can't tell what you're gonna' get until you take a bite out of it.".

To 'twitter' is to 'tweet'

I've been trying to twitter but it's a bit complicated. First you have to make entries with 140 key strokes or less so they have to be concise.

4/7/09 2:36 PM
I started this blog 5 days ago and got distracted. I'll try again.

Anyway, I guess I'm supposed to hook onto other twitters so they will hook onto to me. It's all on the basic assumption of answering the question; "What am I doing?" Now, if I answer that question truthfully, it would be so boring, no one would want to read it.

But, it's very popular. Politicians, celebrities, professionals from all walks of life are tweeting. Go figure!

Checking in from Kansas

It does sound to us back here in the Plains that Don is making sterling progress toward total mobility.  We are thankful for the wonders of medical science that give us new joints and prolong our ability to move around freely and without pain.  As I have said to you all before this new joint business is kept in business by us Hayen boys.  We have done our part.

Spring is trying mightily to arrive here in Kansas.  Snow one day, and 70 degrees the next is a normal pattern of disfunctional weather behavior back here.  I'm ready for warm and dry for a while. 

I received a call from Don the other night.  He'd heard through his son Chris that I'm retiring as of July 1.  I'm going to strike out in some new directions.  Plan to stock shelves or do some non-human contact kind of work to supplement retirement funds.  Then between stocking sessions do some writing, mostly for myself.  I have a full load of family stories which need to be told before I lose the strength to tell them.  Looking forward to the change. 

Chris and Laurie's son Kevin is getting married later this year.  Chris had called to ask me to be the clergy of record.  I had to tell him "No", and then preceded to pontificate on all the reasons why I'm not going to do weddings, funerals, or other functions of the office any longer!  I'm sure Chris was convinced 'ol Unk had gone down the river of those who are burned out to a crust!  Maybe I have.  Just ain't goin' to do any of that preacher stuff anymore (at least for now).  Don called to commiserate - and I have to say I appreciated his support of my rigid stance!  Until later.  From Kansas. 

Nurses notes

I'm still using a cane but my hip is getting stronger every day. I should be off the cane shortly and driving can't be far behind. Ahhh! Freedom!

My short-term memory is certainly going south but it's still not gotten in the way much. Of course Jane might have a different take on that comment. I lose stuff, forget activities and generally behave like a senile old man (which I am!)

I've also become very impatient. I bark at Jane over the slightest drivel, even when she is reminding me of doing what the doctors have told me. She puts up with a lot of crap.

Just so you'll know, I thought I lost this entry 4 days ago when my computer turned itself off. I gave up and just now coming back. My computer has been doing that a lot lately. I've tried to extend its run time before sleep but it doesn't seem to work. Last time this happened the fan went bad and heat made to computer stop.

A bit of heaven

We had a brief shower yesterday, the first 'rain' in over a month. We are way behind this year and it looks like Southern Californian's will have to ration water soon.

In anticipation of that, we had our gardener dig up the old drip system and install a new one. The old one leaked and lost water unnecessarily. The new one should save a lot of water.

We have a itty-bitty garden. A three feet wide strip runs down the side yard and across the back. The front 10 X 10 feet patch is planted in palms and wire grass. Jane has fixed up the strips of garden behind our gate with low maintenance flowering bushes, bantam lemon trees, roses, vines and garden sculptures. It is very quiet and pretty.

March Madness

Because they are not the team they were last year (they had only one starter return to the team this year), I'll have to make excuses for the Kansas Jayhawks before the NCAA tournament starts.. But, they are in and, as defending champs, I'll be glued to the tv for the rest of the month.

As you all know, I'm a devoted Jayhawk. I graduated from KU med school 50 years ago. We're going back to Kansas City for the celebration this coming fall. May get over to Lawrence to see a football game. Ought to be fun.

I don't keep in touch with any of my classmates. Funny; we spent the most stressful 4 years of our life together and then all went our own way. I often think about them. I had two or three who I consider best friends.  Yet we never write.

Life ain't for sissies

I'm almost back to walking without a limp. I'll soon be using a cane instead of a walker, I hope. This recovery has certainly been easier than my knee surgery last year;

Marching on

It's been over a month since my surgery and I'm doing very well. Still using a walker but should graduate to a cane very soon. Doing lots of rehab exercises daily and they seem to be getting me stronger.

The recovery from a hip replacement is certainly easier than a knee replacement. Of course, I had both my knees done at the same time so that made a difference. But this surgery has been a 'piece of cake.'

I'm sure Jane is ready for me to get self-sufficient. She's tired of doing all the chores and stuff.

Jenni update

Jenni came by today and took me for an outing to Poway where she had to get a blood test. Her bad leg seems to have healed and her Reflex Sympathetic Dystrophy is subsiding. But it is a strange condition and very unpredictable, so the doctors are continuing to treat her.

She hasn't been able to work for 4 months. She's getting workman's comp but that will stop as soon as they declare her well. The recession is really doing a number on her and John, her significant other. His work has been cut back so they are just scraping by. That is hard to do in San Diego where the cheapest apartment rents for $1500.

But it is not going to get easier. I think we're in for a long downturn. What a drag.

Patience 'ol Bro

Dr. Don sounds as if he needs a good dose of patience as he is Jane's patient!  I hadn't read the blog for a few days, and as my wife Connie read to me Don's latest entries I couldn't help but note how he and I respond to these various incapacitations of life in such similar ways these days.  It made me chuckle.  How else can he or I manage to survive such moments of "trapped-ness" without considerable growning and gnashing of teeth.  And we might as well laugh about this getting old business!   Patience is not one of our virtues, I can report.  Our genetic coding missed out on that trait.  Our beloved wives both muster whatever patience is needed to get us through our various trials and tribulations!  If you don't believe we're short on patience, take a ride with either of us driving in traffic some day.  Our older siblings (the guys) were even worse!  Right, Don?

I am with the old doc in his conclusion that future surgeries must be avoided if at all possible.  I have decided I can tolerate much pain and anguish with this aging body before surgery becomes any part of a list of options.  I also must say on this threshold of the madness known as March, that Don's spirits will rise to new heights if his KU Jayhawks make it far into the coming basketball tournament.  An elixir for what ails the 'ol doc it would be!  From Kansas.  jan

Every man needs a 'Jane'

I'm beginning to get 'stir crazy' like a prisoner in solitary confinement. It was just four weeks ago I had my surgery but it seems like 4 months. I'm feeling good and the rehab has been much easier than with my knees last year.

But, I'm still using a walker and I'm restricted on what I can do. But the biggest complication is, frankly, my bladder. I'm like an infant. I have no control. The same thing happened last year and it takes a long time to settle down. It's an old man thing.

When Jane has to leave me alone she gathers around me all my tools; a reacher to pick things up off the floor, a bottle of water, my urinal, my walker and a stern lecture that I'm not to get out of my chair. She fears I will fall while she's gone. She's a good nurse.

The last word on joint replacement

The occupational therapist was by today. She's teaching me how to take a shower without killing myself. We've rigged our guest bathroom tub/shower with a slide-in stool and a hand-held shower head. Pretty handy but it's embarrassing to have to undress and dress in front of this young woman.

Although I'm recovering more quickly from my hip replacement surgery than a year ago when I had both knees replaced, the 'do's' and 'don'ts' seem more important and restrictive. Apparently a new hip joint is prone to dislocate if you move the wrong way so I can't cross my legs, rotate the leg out or in or bend the hip beyond a right angle.  All this really limit's what I can do, even though I feel fine.


I've made up my mind; this is the last joint replacement for me. If my left hip gets painful (the x-rays show it is just as arthritic as the right was) I'm going to go to my grave with it. I'm not trying to make out that the surgery was horrible but the whole thing is such a hassle. Who needs it?

A day in California

I just received a reminder that the Alzheimer's annual lobbying meeting in Washington, DC is next month. I went last year with my two new knees and hobbled around without killing myself. I'd love to go this year but I'm not sure I could handle it.

I'm very unsteady. It's a combination of new joints (3) and Alzheimer's and old age. I tend to lose my balance very easy. The physical therapist has insisted that Jenni come over when Jane has to go out.

I rode out to Camp Pendleton today with Jane. She had to pick up some pills and a few things at the commissary. It was a nice outing and a beautiful day; 65 degrees and sunny.

I had to counter this!

I had to respond to older brother's vivid memory of my early days as his sibling.  "Chubby and drooling a lot" really gives us a cute picture of my arrival and Don's clear impression of the hight points of my humanity in those early days.  Don was a great older brother, though I know I taxed his patience mightily from time to time. On second thought, in some almost prophetic sense we do come full circle do we not?  I find myself "chubby" and on certain days "drooling a lot", with the prospect of both chubbiness and the propensity to drool both increasing as I move on into these later years!  Anyway, it was nice for Don to remember my birthday.  Take care 'ol brother, as you gain strength and steadiness.  From Kansas.  Jan

An urgent plea

URGENT PLEA FROM ALZHEIMER'S ASSOCIATION CEO Print E-mail
Friday, 13 February 2009

It is possible that there has never been a moment in America with so much potential to either advance or diminish Alzheimer's research and care. Our nation faces unprecedented times and, with that, comes an unprecedented opportunity to seize this moment and insist our leaders make a greater investment in finding ways to effectively treat, cure, and prevent Alzheimer's disease.


There are an estimated 5 million people who already have Alzheimer's. As many as ten million people care for them. The disease has risen to the 6th leading cause of death in the U.S. Millions more will experience the devastating effects if we don't stop Alzheimer's now. Components of the stimulus package and health care reform could benefit them.


From March 23-25, the Alzheimer's Association will take its fight to Capitol Hill for its annual Public Policy Forum.

It is critical to our mission, to the people we serve, and to society at large to make this Public Policy Forum louder than ever. We need advocates from every state and from every congressional district. We need people with the disease, their caregivers, health care professionals, business leaders, and scientists to raise their voices and educate our policy makers so they know that an investment in Alzheimer's is an investment in the economic health of the nation and the personal health of millions.


The volunteers and staff of the Alzheimer’s Association are working hard to make as much noise as possible about key Alzheimer's issues and to make it as easy as possible for people to attend the Forum. Early-bird discounts and group discounts are available.


Please seize this moment and take an extra step this year by attending the Alzheimer's Association Public Policy Forum in Washington, DC, March 23 - 25. Our elected leaders need to hear your voice.


Never before has so much been at stake nor has time to help families and advance science been more precious. We need to demonstrate both in numbers and in facts why Alzheimer's matters. I look forward to seeing you, and all the others you'll recruit, in Washington.


Harry Johns
President and CEO
Alzheimer's Association

Please contact the Alzheimer's Association at info@alz.org This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Labels: Alzheimer's Association, Alzheimer's Disease, capital, capitol hill, change, D.C., Public Policy Forum, Washington

Chopping wood

Recovering from joint replacement is a lot like cutting wood; it's the same thing over and over again. I'm supposed to be exercising every hour while awake but I must admit I'm not getting it done. I suspect the physical therapist says to do it that often in order to assure that I'll, at least, exercise 3 or 4 times a day.

I've had a strange spell of pain in the evening the past two days. That is not that unusual except that I've had virtually no pain since the surgery. This is a moderate pain like a tooth ache. It subsides with a pain tablet. I haven't yet figured out what is causing it.

Jane and Jenni went to the store today and picked up a shower chair and other stuff so I can shower in our extra bathroom. Our big bathroom has a very small shower stall and they were afraid I will slip and fall. (So am I)

Today is my 14th day post-op. It's hard to believe. It seems like 4 or 5 weeks ago. Time flies when you're having fun.

Happy Birthday, Jan

Forgot to tell everyone that Jan's birthday was last Friday. 65 years ago, he was born in Marion, Kansas on the 13th day of February. I was 10 years old and, up to that day, was the 'baby' of the family. I don't recall that I had any big problem with him taking my place.

I do remember he was a cute, chubby little kid that drooled all over himself. Since all of our brothers (5) and one sister were older that us, Jan and I were kinda' a second family to our parents. We got along pretty well, for siblings.

Fortunately he was too small and young to get involved in all the foolishness of my misspent youth. I'm sure my parents were happy about that too. If you'd like to see what I mean by 'misspent' pick up a copy of my novel Moonshine Harvest at Amazon.com.

Great to be home

Well, I'm home. Got here yesterday and doing fine. Had a little incident yesterday. Slipped on the kitchen floor and nearly fell. My hip hurt a bit but that has passed. I reported the incident to my doctor and apparently I didn't do anything bad.

I'm getting around pretty well on a walker. Walk quite a bit every day and the physical therapist comes by 2 times a week. The occupational therapist was here today and gave us a lot of good pointers of avoiding falls and such in the home. I guess I've proven I need that.

A Second Update

As promised, I did talk to the 'ol Doc yesterday, late afternoon, CA time.  He sounded strong and is looking forward to going home soon.  His rehab is going well.  Jane was able to connect with him by phone.  She is still working on the bronchitis thing, but must be making some progress.  I told Don I would post this brief update for all of you.  Spring is here today in Kansas.  Upper sixties.  Snow is coming in another 48 hours!  Such is Kansas weather.  I know you all notice I talk about the weather - much!  It is a "Kansas Thing".  We have such unusual variety at such short notice.  Some of you cynics would say, "what else is there to talk about when it comes to Kansas?"  Maybe so.  I'm sure I'll keep giving you regular weather updates, whatever the truth of the reason may be!  From Kansas.  Jan

update on Don

I'm sorry I haven't given you an earlier progress report on Don.  I talked with Jane today, Monday.  She is sick as heck with bronchitis, and hasn't been able to see Don for a couple of days.  He is now in rehab where he will be for a bit as he gets his legs back and then is ready to go home.  I tried to call him this Monday morning, California time, he didn't pick up the phone.  I'm guessing he was in a rehab session, most likely.  I'll catch up with him today sometime and get the whole scoop from the patient himself.  Keep thinking about Jane and Don as they get through their respective ailments.
From Kansas.  Jan

Into the Breach

Brother Don's "Final Hours" entry reminded me I need to drop something into this discussion as he will be out of commission for a while.  I hear from other's who have had a hip replaced, that it is not as bad as a knee.  So we will hear from the old Doctor if that is true.  Just do your PT faithfully, brother!

Apprehension before surgery is normal for us I think.  Don's last entry title struck me as a reminder of how honest Don is with his feelings.  He truly may be feeling some sense of "final" in this.  My guess is that with the joint disease we both possess, he may have a few more "final" replacements before it is all said and done.  His larger than expected apprehension level may just be a product of too many surgeries in too short a time span.  Or it could be a side affect of this AD business.  Or it could be just how we Hayen boys are put together.  Every time I have a colonoscopy (every 2 years or so) I freak out thinking about this "final" moment I'm about to experience.  And the worst is always the "prep".  It should be a course in Med School that every doc in training would have to drink a gallon of "Go Lightly".  If you don't know what that is count yourself lucky.

Kansas is beautiful here in late winter/early spring - we never know for sure until May which it is here.  Lot's of sun today and warmer (70's) by the weekend.  Keep Don and Jane in your prayers on this day, and in the time ahead.  From Kansas.  jan


The final hours

I'm sitting here with a list of do's and don't's I'm supposed to follow for the next 18 hours before surgery. You know... what not to eat, when not to eat, how to prep the skin at the site of surgery, etc.

I have to admit, I'm a bit apprehensive. I don't know why. I went through this exactly one year ago. I guess it's just the thought of being out of control and vulnerable. It wasn't even very painful. The rehab was a drag but only because it was like work...boring and unpleasant.

Anyway, at this time tomorrow, I'll be awakening from anesthesia and probably completely out of it. I'm not likely to get another blog entry in this week and maybe even next. I'll do my best.

Surgery over the horizon

We returned from San Diego for the last time, this afternoon. We went back for the last day and to see 'Boomers', a musical review celebrating the baby boomers born in the 50's and early 60's. We are certainly not of that generation but we loved the music. It was fun.

After that we went to see the movie 'Vicky Cristina Barcelona.' I wasn't too impressed but Jane liked it.

I'm on the countdown for my right hip surgery on Wednesday. I'm a bit apprehensive but I know it will go well. One nice thing is I won't have any obligations or chores for 3 or 4 weeks. Aren't I lazy?

Update

We're busy getting ready to dash home for 24 hours. We have choir practice tonight. We'll come back to the time share tomorrow morning.

Saw a stage production of 'Doubt' last night. It was good  The theater was just a block away so we walked there and back.

We've had a nice week down here. It's a great way to "vacation" without all the hassle of travel.

I'm watching the news on tv while I write this. What terrible weather they are having in the mid-west and east. Just to rub it in, it is sunny and 72 degrees here. We just had a cold snap. 49 degrees at night time.

Hitting the big time

Just got an e-mail from one of my contacts at the Alzheimer's Association National Headquarters in Chicago. She had received notice that one of the actresses who attended our panel last week had a note about us on her blog. Her name is Diana Lansleen and her blog address is http://www.dianalansleen.com/blog/.

It is no big deal but she did sound kinda' positive about our message. I hope it helped.

Still in San Diego. Tonight we are going to the live theater to see a production of 'Doubt' which is out on film now. We've heard it is very good.

Life in paradise

Tried to make this entry this morning and the web site choked and my entry got lost in cyberspace. Oh well.

We're on 'vacation' in San Diego. Real nice timeshare in the Gaslamp section. Saw 'Benjamin Button' last night. What a wonderful movie!

Tonight we went to the opera, Tosca. It was my first and I must say it won't be my last. Jane's been trying to get me to go but I've been resistant. I guess it's a hold over from my childhood. My father used to listen to opera every Sunday afternoon on the radio. I couldn't stand it.

We're here another 4 nights and have plans for every one. Even the daytime is busy. We took a ferry over to Coronado today and had lunch. Really great.

Counting down to surgery

Well, despite what the song says it's raining, again, in Southern California. That means that, for you living in the east, you'll be seeing ice and snow in about 5 days.

I was out with Frank today; my friend who has advanced Alzheimer's. He's getting worse by the week. He can hardly tell me his old stories anymore. He gets so mixed up he just stops. I try to jump-start him with a question or two but it doesn't help much.

Since it was raining we went down and dragged the mall. To him, it was all new and he had a great time. We ate a Philly cheese steak sandwich for lunch.

This was my last Friday with him for a while. We will be gone next week to our time share in San Diego and the next week (on the 4th) I have my hip surgery.

I spent an hour this morning before going over to pick up Frank at the hospital, signing paper work and getting instructions. A year ago next week, I was in the hospital getting new knees. Won't be long that I'll be totally bionic.

Spreading the word...

Jane and I were taken by limousine to Los Angeles yesterday afternoon for our panel presentation before members of the American Federation of Radio and Television Artist. The other two panelist were a neurologist specializing in dementia from UC Irvine and David Hyde Pierce, the actor who played Frazier's younger brother on TV.

We spent two hours discussing the unique signs of Alzheimer's and how they might be portrayed in screen plays or on stage. It was a lively discussion and I enjoyed it. I had many opportunities to tell jokes and to pitch the need to display the early signs of dementia to take the mystery and fear out of the word Alzheimer's.

By the way, David Hyde Pierce was very friendly and down-to-earth. Celebrity has not seemed to affect him. He even hugged Jane and I on departing. I was  very impressed with him.

A death in the Hayen clan

We Hayen's began our sojourn in Kansas on a 160 acre patch of ground purchased by our Great grandfather from the Santa Fe Railroad sometime in the late 1880's or early '90's.  It is still owned by family members, sons and daughters of Don's and Jan's Uncle Walt Hayen. 

Until Tuesday morning, January 20, the Keeper of the Land for the family was an older bachelor cousin of ours, son of Walt, John Hayen.  That morning, he was killed in a truck accident, while helping a neighbor move some stuff on a farm a mile or so south of the Home Place. 

John was a bit of an eccentric character all of his life.  He never married, stayed on the farm, and for most of his adult life took care of his mother, our Aunt Dorothy, Walt's widow.  He was a character who could have walked out of some book or other, a perfect stereotype of what many of you non-Kansans would picture a Kansas farmer to be.  Kind of wooly, more than a bit opinionated, with a not-so-large world view informing some of those opinions. 

I'm going to miss 'ol John when the larger family gathers in those increasingly infrequent reunion times.  Mostly we gather at funerals these days.  At those times, John always had some goofy theory going for some issue or other, which always got me going.  We'd debate, drink coffee, laugh a little, and agree we'd never agree. 

The Family will gather on Saturday, January 24, at the family church in our home town of Marion to pay respects, tell stories, remember John's life, and bury him out at Grant Cemetary, just a couple of miles from the farm, right next to Walt, Dorothy, and all the rest.  From Kansas. 

A historic event

With all the craziness in this world, we must stop and reflect on the need for sanity and tranquility during the inauguration tomorrow. Let's pray that some radical doesn't see it as an opportunity to get their 15 minutes of fame.

I saw on TV news that they will put up a glass shield to protect President Obama. But with the variety of weapons available today, it is still a bit scary.

Isn't it sad that we have to consider the a possibility of an attempted assassination, particularly with a black president. We've come a long way but we're dragging a big load.