First off, thanks for checking in. I’ll try to keep this as a weekly feature. I don’t expect to have anything earth shaking here but I would truly value your feedback on anything you see here.

This will be a combination of thoughts, observations, and reporting on what I see as a PALS (person with ALS) and as a plain old citizen.

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July 9, 2006

I hope everyone had a good 4th of July holiday. We had a good visit from my wife’s brother Michael and his family. In Wooster our fireworks are shot off on July 3rd. Michael and I stayed home with my dog, Gus. As predicted Gus went a bit bonkers during the fireworks but we were able to calm him down. The fireworks are only about ¼ mile from our house so they really rattle the windows. I used to really like those big boomers but now I can do without it. It was good to spend time with everyone, I look forward to seeing them all again . . .   

Some quick takes:

I saw the movie “The Sting” last night. It’s more than 30 years old but seems to get better with age. Newman and Redford did some great work together…

My daughter and I were watching the VH 1 show, I Love the 70’s (I think that’s the name). It’s a good show but they flash too many graphics and stuff at you in a staccato fashion. My eye balls were about to bug out. Then Jimmy Hendricks came on. Man, I forgot how well he could play. I would like to pick up a CD of him. Drugs ruined so many of the musicians from that era. What a shame . . .

I recently had to sell my Honda Reflex. Damn. I just couldn’t operate it safely anymore. You can see it in the picture section of this web site. That was a tough sell . . .
 
We’ve begun our relationship with Hospice of Wayne County. What a great organization. I highly recommend PALS and CALS look into this. And it doesn’t necessarily mean you’re about to cash in your chips. If you’re able to stay healthy you can sign in and out of the program quite easily. They offer so many helpful services . . .

I went to Cleveland Clinic, Wooster branch, to see my new pulmonologist. I was really worried going into this one. My last appointment yielded an FVC of 33. Yuk. That’s close to the range where they discuss “choices” with you. But at this latest appointment I clocked a 39 and my blood gasses were good. I won’t be taking up the trombone anytime soon but it was so neat to see the numbers go the other way for a change. This almost never happens. I prayed hard before the appointment and I really could feel God’s influence. If any of you are praying for me, please keep up the good work! . . .

Peace, healing, and love to you all . . . 

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June 25, 2006

We’ve had some wild weather lately. Big honkin’ thunderstorms that seem to roll in in waves. We got lucky and only lost power for a few minutes with each storm, but the rest of our fair city wasn’t as fortunate. Our downtown business district lost power for a couple of days. It can be a big deal to PALS due to our reliance on ventilators, bi-paps, and other equipment requiring electricity. If our house doesn’t have electricity Yours Truly would need to try to sleep sitting up draped over a chair so I could breathe. I had some experience doing this at Kent State back in the early 70’s, but I won’t get into that right now. I would like to talk to our electrician about installing a generator. There’s 2 ways to go on that, the $500 way and the $5,000 way. Yuk. I’ll keep you posted. . . 

We spent an enjoyable couple of days down at Mohican State Park. If you go to the picture section of this site you can see some pictures I’ve taken of the area at Clear Fork gorge. I’ll also post a couple of new pictures. My daughter and her good friend Tracy had a nice time. My wife Ellen and I did too as we explored some beautiful paved paths through the woods. My electric chair got quite a workout going up and down the hills. A good time was had by all. . .

My brother Tom, his wife Wendy, and our good friend C.G. King worked their tales off for a couple of days and built us a roll-in shower on our first floor. Thanks so much you guys, I can’t tell you how much I appreciate it.

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May 28, 2006

Did anyone see this news item in the Sunday paper?

Associated Press, Kim Gamel; Baghdad, Iraq:  “An Iraqi tennis coach and two of his players were shot to death last week in Baghdad because they were wearing shorts, authorities said Saturday, reporting the latest in a series of attacks attributed to Islamic extremists… Extremists had distributed leaflets warning people not to wear shorts…”  The pamphlet read, in part; “Wearing shorts by youth are prohibited because it violates the principles of Islamic religion when showing forbidden parts of the body. Also, women should wear the veil.”
This news story is disturbing to say the least. Several things strike me:

• I’m really hoping this is not what true Islam is all about.
• I’m hoping we hear from Islamic religious leaders who condemn such shootings.
• If the clash of cultures and ways of thinking between “us and them” is really that severe, we’ll end up being there for the next 500 years trying to “stabilize” the situation.
• My gut feel is that the rank and file Iraqi citizens are appalled by such shootings.
• I hope we get our people out of there as soon as possible…

As my body continues to replicate the wreck of the Edmund Fitzgerald my beautiful wife Ellen has had to do more and more each day to keep me afloat. She’s been helping me with all aspects of living from morning to night. She also works from our home as a free-lance writer, tends to the needs of our 16 year old daughter, keeps our home running and in the meantime tries to have a few minutes for a life of her own. She’s magnificent and I love her with all my heart…

Ellen, Danya, and I are so thankful for the loving help of our friends and family. These people have helped us in so many ways from their ongoing spiritual support to walking the dog, going to the store, making us meals, giving rides, cutting the grass, making home modifications, cutting hair, putting together this web site, you name it. Without this support we’re sunk. Thank you all, you’re magnificent too…

Hey did anyone see the end of the Indy 500 today? Wow. I’m not really a racecar fan but that was like a movie or something. I was cheering for the 19 year old Andretti kid but he got beat by about 4 feet at the finish line. What an exciting finish. And with that I’m finished for this week. Please leave your comments by clicking the link below, and please sign the guest book…

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May 22, 2006

Sorry about the long gap between entries,  I’ve been in my cave licking my wounds...

I hope you’re all doing as well as can be. The weather is turning for the better and we can all get outside. Let’s get our wheel chairs and scooters out into the neighborhood and re-connect with our neighbors and do our neighborhood homeland security detail...

We just had a nice visit from my wife’s parents, then the following week from my side of the family. It was so good to see everyone from both sides. The last of the crew left today and I got all emotional. I’m getting too maudlin these days, but it’s probably ok ...

Our Cleveland Cavaliers gave the Detroit Pistons 7 games of holy hell before bowing out today. I’m so proud of those guys. We could really use a big, nasty defensive presence down in the paint. I hear Ben Wallace is a free agent after this season. Hmm ...

A tip for those having trouble falling asleep at night. I listen to the George Nory/ Art Bell “Coast to Coast A.M.” radio show. It starts around midnight and goes to 5am. A lot of interesting topics are discussed such as ghosts, flying saucers, and current events in the news. I usually last an hour or so before drifting off ...      

Courage and healing be with us all. Remember, intention is everything ...

 

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April 16, 2006

I hope you’re all doing as well as can be. Those of you reading this who have debilitating or “terminal” medical conditions are familiar with the despair that can come when we feel our bodies falling apart. Simple things I used to take for granted such as eating, swallowing, breathing, talking are no longer simple things. This is a weird time in our lives. It tends to be a lonely, frightening experience despite the support of loved ones. And thank the Lord for the support of loved ones. I would have sunk beneath the waves long before now without my families’ support, especially my wife Ellen. But this business of dying is a very unique thing among humans. It’s one of the few major events in life that we do singularly, one at a time. When these wacky cults get together and drink poison coolaid and all drop dead together we’re aghast. These people are sick and misguided to say the least. But dying like that might have some sort of twisted advantage over the way we all do it. Ok, ok I’ll dial it back on the weird scale a bit…

PALS, let’s support each other. Stay in touch with one another on the phone, if you’re still able to, or via email. We’re a small band of soldiers pinned down by one of the most powerful enemies in the world. Incoming rounds come screaming in around us on a daily basis. Let’s communicate and keep fighting until we’re totally out of bullets. We’re not in this alone. CALS, this goes for you too…

Courage and healing be with us all…

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April 9, 2006

President Mamoud Ahmadinejad. Have you ever heard of this guy? If not you’ll probably be hearing a lot about him soon. He’s the president of Iran and he’s loaded for bear. He recently made the incendiary statement that Israel should not exist, then followed it up by saying the Holocaust never happened. Yuk. This guy is not only a jabroni, he’s evil and very dangerous. The latest out of Iran, as most of you know, is that they’re thumbing their nose at the world and going forward with their weapons grade nuclear program. The film they released on this was right out of a Saturday Night Live skit. They had some maniac jumping up and down in front of the camera (literally) with what was allegedly a steel vial full of plutonium. For all anyone knows it may have been a vial of Alka-Seltzer. But the point is these folks are going off like a roman candle.
I don’t care how much Iranians dislike America or dislike Israel, they need to refocus on themselves and do something about this Mamoud fella. There are tens of thousands of college educated people in Iran. No matter what their beliefs or bad feelings are I’m hoping against hope that sometime soon they will stand up and say, “Hey, this guy is nuts”, or words to that effect.
I believe now more than ever that we blew it going in and putting all our resources into Iraq. We’re now being portrayed as the anti-Arab Darth Vader, which complicates situations like this.  
 The 64 billion dollar question: How can this be dealt with without the situation degenerating into another war?  (Let me put a plug in here asking for your feedback. Just click on the word “comment” at the end of this entry. Maybe collectively we can come up with something.) One thought that comes to mind is that a world wide response is probably needed. The more the U.S. attempts to “go this alone” the more crazy this is going to get. Currently the U.K. is distancing themselves from this mess but I think this is mainly due to the quagmire they got into with us in Iraq. The U.N. needs to put this on the front burner. I’m not a huge fan of the U.N. but right now it sure beats the alternative. Let me know what you think….

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April 2, 2006

Ok ladies and gents the weather has broken. PALS and CALS let’s recharge those batteries and start your engines on those electric wheelchairs and scooters. I’m looking forward to getting my 4-wheeled scooter back on the road (and off-road!). Speaking of the weather, it’s been so nice to roll out to the back porch and back yard and enjoy the air, especially at dusk. For some reason I’ve always loved that time of day. It seems like nature slows down as it gets ready for nightfall. Sounds and smells become more identifiable in some way. The other night I could clearly hear kids playing at the ball field up at the high school. Those sounds and the new smells of Spring brought back a flood of old memories from my childhood. It’s cool when the correct brain cells fire and we’re transported back to those magical places. It comes close to what Leo Buscaglia used to refer to as “rapture”. Man what a beautiful word….

Let’s make it a great week….

 

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March 26, 2006

I’ve been thinking a lot lately about all the unrest and violence in the world. The Middle East, Africa, etc., etc. It all seems so pointless. But even more disturbing to me is that in my 51 years I haven’t seen a solid trend toward peace. Quite the contrary. But why? What’s happening? Why can’t we get it together as human beings as far as avoiding war?
Part of the answer may lie in a book I read about 25 years ago. I’m having problems remembering the name of the book, but PBS did a multi-episode series on it at the time. The main premise of the whole thing was that human conflict is almost inevitable due to our pack-like instincts. The author’s theory is that we’re driven to join or to at least strongly identify ourselves with specific packs or groups of people, then circle the wagons and prepare for any potential conflict from any competing group. This frequently leads to conflict or war between the groups.
This can manifest itself in humorous examples such as Cleveland Browns fans being at odds with Pittsburgh Steelers fans. I’ve seen some of these beer induced arguments degenerate into actual fist fights over the years. This is laughable, but let’s look at more serious divisions that separate us from each other:

• “Conservatives” vs.  “Liberals” : This seems to be a really hot one, especially in the last 20 years or so. It’s a man-made division that people seem to revel in.
• Democrats vs. Republicans: This was the more common political division when I was young. It made for some good debate, but not the rancorous, mean-spirited stuff you hear now days.
• White people vs. People of color: This division has gone on for hundreds if not thousands of years. This is tragic on how much time and energy has been put into this one. Most of the blame lies with the white-folk who had the dominant position through most of this. But there’s enough responsibility to go around for the people on both sides of this divide who foster the continuance of the wall between us.
• Men vs. Women: How many books have been written on this? Yes there are probably some differences between the sexes, but that’s what makes life interesting. Men and women who dwell on the negative aspects of the differences seem to want to hide within their group at the expense of understanding between the two.
• Muslims vs. Western hemisphere “Infidels”: Wow, this one is dangerous. I’m not intelligent enough to sort this out. But this “holy war” could result in the destruction of the planet. This is middle ages stuff but it’s frightening how things seem to be regressing back to that earlier time period.
• Arab/Muslim people vs. Israeli people: Such a large gulf exists here. Again, I wish I had the answer. A lot of “experts” believe a Palestinian state will help. It will probably help but I doubt it will fix the problem.
• Sunni’s vs. Shiites vs. Kurds: I may not have spelled these correctly but this is making the Iraq situation next to impossible to deal with. This is a tribal situation that goes back how many hundreds of years.

There are a million other ways that people are divided; rich vs. poor,  Catholics vs. Protestants (Ireland), “jocks” vs. “geeks”, white collar vs. blue collar; and on and on.

To try to sum this up; I agree with the author I referred to at the beginning of this. That as human beings we are drawn, maybe instinctively, to affiliate ourselves with people of like kind or interest. We assemble together in our groups and find ways to strengthen the bonds within the group.
Groups offer people an enhanced sense of identity.  They also offer people pride in being a part of the group, as well as added protection. These are all good things.
Where things run amuck is when we don’t use our unique abilities as human beings to transcend the group when it becomes apparent that people are going to be slaughtered in armed conflict. Wolves and chimpanzees don’t have the ability to transcend the “group think” in this way but we do. We have to remind ourselves of this, especially now, and try to put some distance on the middle ages….

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March 19, 2006

Recently on cable an old movie has been making the rounds, “In the Heat of the Night”. I didn’t feel drawn to this since it was made almost 40 years ago (1967), I saw it in 1967 at the theater, and I don’t much like watching movies on TV because of the commercials. But I started watching it anyway and was totally drawn in by it. It stars Sidney Poitier and Rod Steiger. It takes place in a quiet little southern town where a murder takes place. Poitier (Virgil Tibbs), an African-American, who is a Philadelphia homicide detective happens to be down there visiting his mother. Steiger is the tough “red neck” police chief of the town. The two men don’t like each other but end up collaborating on finding the killer. That’s a gross over simplification of the story line, but it’s a compelling movie. What makes it compelling has nothing to do with car chases or sex scenes or guys jumping out of the closet wielding axes. What makes it compelling is great acting and a well crafted story line with excellent dialog. Some of today’s movies could take a cue from this. I did some poking around on the internet to see what else came out in 1967. Here’s a partial list; “Wait Until Dark”, “Cool Hand Luke”, “In Cold Blood”, “The Graduate”, “Guess Who’s Coming to Dinner”, “Barefoot in the Park”. Those of you who are movie buffs know that these are quality films. And that is just a small snap shot from one year, 1967. I think a good tip for PALS and CALS and anyone who enjoys a good movie is, take a look at some older films when at the video store or library. There’s a treasure trove of quality that is just collecting dust....

Saint Patrick’s Day was a couple of days ago. I’m half-Irish and have some good memories of that day over the years. My grandmother, my dad’s mother, was born in County Mayo. She had a tough life and didn’t seem to have a lot of sentiment for the old days. But I remember a Saint Pat’s day when I was about 8 years old when she got a bit maudlin and let her Irish show. She was babysitting me and we had the radio on. They were playing the old Irish songs and she was humming along. I asked her if she remembered any of the words to these songs. She seemed a bit taken aback but then said, “why of course I do” in her Irish brogue. She then commenced to sing along with the music, tapping her foot to the beat. They were beautiful songs and she got all choked up singing one of the ballads. I felt terrible and didn’t know what to say. I finally stammered out something like, “I’m sorry Grandma”. I’ll never forget her response. She waved it off, smiled and said, “Sometimes tears are good”. Now that’s Irish! :-) .....

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March 12, 2006

Ladies and gentlemen, the Guest Book is now operational. Our web-master Mike installed the premium version of this without all the pop-ups. Thanks to Mike and his wife Gina Marie for helping me get this web site constructed. They are real pros and I’m asking Mike to put up a link of some kind on my cover page so that anyone can access their services. They work with individuals, businesses, rock bands, politicians, you name it. But please take a minute to sign the guest book....

I had an absolute shocker the other night. Our monthly card game happened to fall on my birthday. The night before my wife was closing up the house and I’m in the spare bedroom on the computer. It was about 11pm and Ellen says, “Hey I brought you an early birthday present”. In walks my oldest brother, Tom, who lives 750 miles away in the U.P. of Michigan. I had included him in my card game email reminder. He jumped in his car and hauled ass for 15 hours to be at the game. I about passed out when he walked in. The next night at the card game he won about 100 bucks. Who invited that s.o.b. anyway?....

Speaking of the game.... We had 12 guys playing so each pot was a monster. Money was changing hands like it was the federal reserve bank. I ended up losing about 20 bucks but I had a great time. It was a blast to see my brother and all the guys. It’s a good excuse to get together and socialize and have a few laughs. I think women are better at getting together like this than guys. But guys do well when they make an effort to set aside the time to do this. As I mentioned in another entry I wish I could bottle good times like this....

Whether we’re ill or healthy, all we have is this 24 hours we’re living in. Let’s try to make the best of it....

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March 5, 2006

Three of my former co-workers; Ida, Mary Lynn, and Cindy, came to visit me today. It was so good to see them and catch up on what’s been happening in the big city. My wife and I had a nice brunch with them here at the house. During such visits I don’t remember or feel that I’m disabled in any way. It’s just old friends and co-workers sitting around talking and enjoying each others company. It’s like being in a time capsule back before my run-in with Darth Vader back in the summer of ‘04. Man I wish I could bottle that nice, protected, “normal” feeling. But it’s good to know I still have access to it. I’m so blessed to have a loving family and friends like this. Darth Vader, take a seat over there and cool it for awhile....

March 8, 1971. 35 years ago. Man where did that time go. I was in high school then and a sports junkie. Even more hard core than that I was a boxing fan. I know that is offensive to many readers due to the violent nature of the sport. I understand and have no reasonable defense for boxing. My interest in it was parallel to Ernest Hemingway’s references to it. That it is a very basic form of competition that requires a human being to summon up levels of courage and strength sometimes hidden deep within. There are no teammates to hide behind, no protective equipment, no bats, no tennis racquets, no nothing. Just two people with their two hands and no place to hide. Hemingway believed it revealed truth in some way. He was a bit nuts but I think my fellow hockey players and other participants of contact sports have some understanding of this. That’s a bit of a journey but brings us back to March 8, 1971. If you know anyone who lived or worked in New York City in those days they will tell you the whole city nearly stopped on that night for “The Fight of the Century”, in Madison Square Garden. Two undefeated heavyweight champions met that night to see who was best. Muhammad Ali vs. Joe Frazier. The quality level of these two fighters was off the charts. It’s hard to relate to today, boxing has sunk to such a dismal level. That night anyone who was anybody was at “The Fight”. United States senators, the mayor of New York, movie actors, entertainers, writers, you name it. My father had died a few months before this night. We used to watch the fights together. But as I sat there listening on my a.m. radio I had the strong sense that he was there listening with me. It’s all history now but my guy, Ali, lost. The Fight lived up to its hype though. Both guys gave it all they had and it went the distance. That’s probably all anyone can ask....

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February 26, 2006

A good man, a friend of mine and fellow PALS, passed away this week. Chris O’Brien was only 42 years old but touched many people’s lives while on this earth. He comes from a wonderful family and had a wonderful family of his own including a wonderful wife and 3 young children. Chris and I were only friends for a short time but I admired his courage, his sense of humor, and his gift of being a real gentleman. He was a devout Catholic and I’m sure took the express lane to heaven. I’m having trouble dealing with the unfairness of a young family man being taken away so early. I understand that “life is unfair”, but if I hear that expression one more time I’m going to be sick. The world has lost a good man. Trust me, this guy was the real deal....

Let’s remember to all pray for each other. Life can be such a rocky journey. In the end all we have is each other, the material stuff is b.s......

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February 19, 2006

My good friend Gary gave me an excellent book recently that I highly recommend, “The Teammates, A Portrait of Friendship”. It’s written by David Halberstam, the Pulitzer Prize winning author for the work he did during the war in Vietnam. It’s about the life-long friendship of four old Boston Red Sox teammates; Bobby Doerr, Dom Dimaggio, Johnny Pesky, and Ted Williams. It takes place as Williams is nearing the end of his life down in Florida and the boys take a car trip down there to be with their old friend. I think the book speaks to the magic of friendship and the bond that human beings have with each other. It’s nostalgic and a little sappy but I love it....

Peace and healing be with you all......

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February 12, 2006

I went to my clinic day at the Cleveland Clinic on Wednesday. This is the interdisciplinary team approach that happens every 6 months. It’s an excellent team staffed by caring people. But man I layed an egg at this one. What I mean by that is my functioning level has gone down quite a bit in the last 6 to 8 months. That ticks me off for the obvious reason of wanting to hang in there on this earth as long as possible. But also for other reasons that I thought were dormant for quite some time: Pride in who I am as a physical being, and a competitiveness while doing the usual tests/exercises the team puts you through. While doing these things and answering the team’s questions about my level of functionality I could feel as if I was losing a hockey game by the score of 12 to 1. I felt I was getting smoked by a team we used to beat easily. And that pissed me off. I know that sounds weird but in my gut I feel this reaction is healthy for me. We might be losing 12 to 1 but the game ain’t over yet and I still have a few tricks up my sleeve.....

We had our monthly poker game last evening. It was so great to see the guys. Amidst the cards were a lot of laughs and great conversation. I started the night losing the first 10 or 12 hands. But after we changed decks (thanks Rich) things started to happen. I went from a low of $6 to my ending balance of $72. I don’t usually talk about the results of poker games but this was the best run I’ve ever had. Hmmm, now if I could just do that with my health we’d have something here......

Peace...

Love......

Courage......

Hope...........

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February 5, 2006

Many of you saw the episode of ER on NBC this past week. I think it was a good effort and it looked like James Woods did his homework. If I were writing that episode I might have narrowed the scope a bit. It’s so hard to boil down a disease like this into a one hour show. But I’m thankful they took a shot at it. I think it helps to “raise awareness”. I never really understood what that phrase meant until I got this wacky disease. But now I understand that the more people know about a situation the more likely it is they will try to help financially and otherwise. This translates into more intensive research and ultimately a cure. So bravo to NBC and the ER gang. The final scene of the episode really got to me. I used to be a hockey player and when they showed that ice rink it hit me pretty hard.....

Has anyone been keeping up with this wacky Sadam Husein trial? I wasn’t in agreement with us committing our troops to that war but now that we’re there this guy needs to be prosecuted. He stands up every day waving his arms around and shouting at the judge. In our country the minimum that would happen is the defendant would be cuffed and led from the court room. Why they let him do whatever he wants is beyond me.....

With the assistance of Northeast Ohio ALSA I got my first wheelchair the other day. Talk about mixed emotions. I’m glad I’m safer now and don’t have to worry about taking nasty falls. But to think I need the thing in the first place is a downer for sure. I’m going to keep using my legs as best as I can. But when I’m out and about I’ll use the chair to keep my face off the tarmac.....

Let’s all keep praying for each other. Peace and healing be with us all.....

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January 29, 2006

I’ve always enjoyed studying history, in fact I’m a bit of a hack-historian. What I mean by that is I never was a great history student in school but I’ve always enjoyed researching historical things that have some importance to me. The way history was presented to me in school was a real turn off. It usually involved memorizing dates and people’s names or wars associated with those dates. It seemed so compartmentalized and sterile. Nothing seemed to connect on a human level. My kind of history, to give a specific example, is when I was walking through Thomas Edison’s home in Milan, Ohio many years ago. On the wall was a photograph of Edison camping in the woods of northern Michigan with two other gentlemen. One of the two I recognized as Henry Ford. I found this fascinating. I asked the tour guide about it and who the third person was in the picture. She indicated that yes Edison was good friends with Henry Ford and also with the third person in the picture, Harvey Firestone. No one in our group seemed to be interested in the picture and the guide wouldn’t have pointed it out unless I had asked about it. But to me this represented real history. Can you imagine those 3 guys sitting around the campfire at night talking? Some of the ideas they kicked around probably ended up giving some shape to the future of our country. But my point is why don’t they teach history like this? I had no idea these guys even knew each other, let alone had some influence on each other’s ideas.....

On a related subject; if you recall a few years ago Ford SUV’s were having these roll over accidents on the highway. If a driver made too severe of an evasive maneuver the SUV would flip over and roll onto its roof. The fall guy, in large part and probably unfairly, ended up being the tires. You guessed it, Firestone tires. Through all of those decades Ford Motor Company continued using Firestone tires on their new cars and trucks. There were even hearings in Congress dedicated to this problem. I remember the Ford executive, I’m almost certain it was William Clay Ford, testifying that Ford was now reluctantly severing their ties with Firestone. He spoke of the long and loyal history the two companies had with each other and actually got a bit choked up. Unless I had seen that picture in Edison’s home so many years before I wouldn’t have understood that moment fully, and probably would have laughed at a Ford executive getting so choked up about a “business” decision....

I hope you’re all living each day well. Peace.....

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January 22, 2006

If you haven’t noticed the website is starting to really take shape. Thanks to my web experts Mike and Gina Marie this site, this dream, is really becoming a reality. I really hope you all use the features here. For instance I would love to hear from you the readers. You can do this by just clicking on “Comment”. You can then leave an entry or reaction to anything you read here, or anything you would like to add. “Trackback” is a method by which you can attach an article or reference to anything you read. I really want this thing to be interactive so I encourage all of you to give me your comments and observations....

The “warm” January weather continues. Three cheers for global warming. Just kidding. But January and February in this part of the country can be pretty brutal for folks with disabilities. We’ve been breaking into the 40's and even the 50's on a regular basis so far. Here’s hoping we don’t get wolloped in February.....

My typing ability sure “ain’t what it used to be”. I’m sure you PALS out there can relate to this. I’m thinking of exploring an assistive program like Dragon Dictate. I’ll explore this at my next Clinic appointment Feb. 8 th. My voice is still good so this might be an option....

My Cleveland Cavaliers (NBA basketball team) have taken it on the nose recently. Here’s hoping they can get this thing turned around. They lost one of their best players, Larry Hughes, to injury. He’ll be back in about 6 weeks but they need to make some adjustments till then....

Be well......

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January 15, 2006

Well, I’m getting closer to getting my first wheelchair. Yuk. It’s a “yuk” type thing, but not as yucky as you might think. I’ve been taking a few falls and have zero confidence in going out to our van, or going out anywhere for that matter. So it looks like the first chair we get will be a very light manual chair we can throw in the van. At some point I would like to look at a power chair. In fact I’m already taking a look on the internet. I’ll continue to use my legs as much as possible, but when things look dangerous I’ll use the chair. More on this as we go forward....

I’ll be at the Cleveland Clinic on Wednesday to see my pulmonologist. They’ll check my fvc rating and we’ll talk.... Another “yuk”......

Good playoff football this weekend. I predicted the outcome of both games, almost. I knew Pittsburgh would give the Colts holy hell, but I thought the Colts would find a way to pull it out. I predicted that Carolina would beat Chicago and they did. I think both Carolina and Pittsburgh are tough teams manned by tough guys. Not a lot of finesse but they know how to grind.....

I hope winter is being good to you all. Wear enough clothes and keep the home fires burning...

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January 8, 2006

I hope you’re all weathering early January ok. This time of year is particularly tough on people who live in the north and are disabled in any way. Here in northern Ohio we’ve been blessed the last couple of weeks with temperatures that have reached the lower 40's. I know this doesn’t sound too good to those of you who live in warmer climates but to us it makes a world of difference. The main thing is it melts the ice and snow from walkways and driveways so we can make safe transfers getting in and out of vehicles and buildings. January and February are usually the toughest weather months in the north so we’ve got a long way to go. But we’re off to a good start....

I’ve been fighting off a bit of a virus lately. I’ve been laying low trying to get healthier. I seem to be more susceptible to this kind of thing than before. The old immune system sure “ain’t what it used to be”....

Our Cleveland Browns ended up the season at 6 - 10. Not exactly the 1967 Green Bay Packers but to us die-hard Browns fans it was a significant improvement over last year’s 4 - 12 team. They competed very well in 15 out of the 16 games and could have easily won 2 or 3 more games. They need to keep the positive momentum going....

I saw an interesting show on the National Geographic channel about the 9-1-1 tragedy last night. I think 9-1-1 was one of those events like the Kennedy assassination where you can remember exactly where you were and what you were doing on that day. I was at work that day with my co-worker (and friend) Kate. Kate found a TV and we watched in horror as the tragedy unfurled. We both knew at that moment that our country and the world would never be quite the same again. We also knew the importance of trying to understand what just happened before our country “hit back”. In my opinion I don’t think we did a good enough job at this. Maybe we can get into this in a later entry. The night of 9-1-1 I got on my motorcycle and took a brief ride around the outskirts of Cleveland. Talk about spooky. There was almost no traffic as I made my way out to the airport. I rode by the airport in total silence, no cars on the road and no planes going in or out. Only the runway lights stood there glowing quietly. I then rode down to the Metro Parks and went for several miles. No cars, total darkness. I parked briefly at a turn out and saw the running lights of a plane. As it got closer I could tell it was a fighter jet. It then made a sharp U-turn over my head, probably at an altitude of about 15,000 feet. Man what an eerie night.....

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January 1, 2006

Happy New Year to all. Wow what a year it’s been. From the ridiculous to the sublime, from the happy to the tragic this year has seen it all. One of the things that stands out for me is the horrible tsunami. Man, thousands of people wiped out in such a short time by a freak wave. It makes you wonder about a lot of things. I believe firmly in the existence of God but sometimes I can’t quite figure out how it all works. Maybe it’s not for us to figure out.... We’re well into winter now here in the mid west. Thank goodness it’s been mild the last week or so. Cold weather isn’t a friend to people with neurological problems. It’s hard to negotiate slippery sidewalks using wheelchairs or walkers, and your muscles freeze up on you and loose strength. If I get sent back here for a next life I’m going to live in southern California or maybe the Carolinas. The way my luck has been running I’ll probably show up in Afghanistan.... :) My daughter Danya is learning how to drive and she’s doing well. She has a good feel for the dynamics of a vehicle in motion. She knows how to be attentive to it without being uptight. I think she also has a healthy respect for what can happen if you don’t give it your full attention. I’m proud of her for this. I always considered myself a good driver and always had a good feel for operating machinery including cars, motorcycles, snow mobiles, and even a jet ski once. You either have a good feel for machinery or you don’t, and I think she does... Speaking of my daughter, she got me a good book for Christmas, “Dean and Me”. It’s written by Jerry Lewis about his life on the road with his partner Dean Martin. It’s a real page turner and has some really good stories about the old days. They were both broke and trying to make it in New York when they first met. They went from that to making $250,000 per week in 1950. That was a lot of dough in 1950. But they worked for it too. A week working at a club in those days meant doing 4 to 7 shows a day for 7 days. They were exhausted but they knew they were catching fire so they kept pushing. To make it in New York in those days you had to be able to sing or dance or make people laugh or a combination of all three, which was what they did. There weren’t many media creations back then. If Brittany Spears came to New York in the 40's she probably would have ended up in the crapper...

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December 26, 2005

I hope that everyone is having a good holiday. I think what makes it good is the people in our lives. Most of you who have made your way to this web site already understand that it’s people, not stuff, that makes life worth living. May God bless us all and be generous with his blessings...

I think more now about the “old days”. Drifting off to sleep on Christmas eve my mind took me back to my childhood and Christmases from my childhood. The late 50's and early 60's was a great time to be a kid. It still had some innocense, I think, whatever that is. While lying there the other night I thought I could still hear the sounds of my childhood home, smell the smells from my Mom cooking in the kitchen. To be young (and healthy!) and to have your whole life still out ahead of you made those days even more magical...

I was a fairly decent hockey player as a kid. Not as good as my older brothers but still pretty decent. When you’re young you can be blissfully consumed by such pursuits. We lived on the edge of a small lake that we all skated and played hockey on. This gave us a leg up when we went to play organized hockey and eventually high school hockey. But those early days were the best. My favorite team back then was the Chicago Black Hawks. Bobby Hull, Stan Mikita, and the rest of the boys. Years later when I was on the Freshman team in college, and playing center (I was a defenseman up to that point) my coach said that my style of play reminded him of Stan Mikita! Wow. Talk about a head rush...

Have a great holiday season. And maybe, just maybe, we can still capture some of that old magic...

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December 19, 2005

Well, winter has set in around here for sure. It’s been a blustery December so far. Usually this type of weather doesn’t take hold until January, but that’s life in the mid west. The thing I don’t like is that I can’t get outside very much. I’m still able to get around with a cane and/or a walker, but I’m no match for patches of snow and ice. I took a dive recently in our driveway early on the morning of my Cleveland Clinic visit. My walker shot out from under me and I went down like a sack of potatoes. I kissed the tarmac pretty hard which set off a chain reaction in my small intestine that rivaled the a-bomb at Hiroshima. Is this how the Manhattan Project was inspired? I hope not. Needless to say I didn’t make it to the Cleveland Clinic that morning...

The above incident reminded me of something else I’ve been thinking about for a while. Medical people always say that a person with ALS loses their sense of balance eventually. As a former athlete I view this differently. I think we all still have our sense of balance but all those little stabilizer muscles in our ankles and legs go to heck and we can’t self correct like we used to. I think my sense of balance is as good as it ever was. I have a keen sense of when my center of gravity is starting to list to starboard or port but my stabilizers don’t kick in so I have to grab something or hit the deck...

My beloved Cleveland Browns finally won their 5th game of the year. They beat the Oakland Raiders in Oakland, 9 - 7. Not exactly an offensive slugfest, but we’ll take it. Even though their record is awful (5-9) they’ve been in every game till the end. The Bengals beat us last week 23-20 on a last second field goal. I think we need about 2 more “difference makers” on both sides of the ball...

I’ve always had a love of history, especially local history wherever I’ve lived. I know it sounds weird but I think there’s karma or spiritual residue left over from the people who lived in a certain area but who have since departed. Since my diagnosis with this ALS business I feel even a stronger bond with the people who have come before us. I’d like to talk more about this in coming updates...

Until next week, courage, hope and faith to us all...

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December 11, 2005

As my universe of things to do shrinks with this wacky disease I am now doing more sedentary activities than I used to. I’m definitely watching more TV than ever before. The good news is I’m also reading more than before. But let’s stay with this TV topic for a minute. In certain ways I think TV gets a bad rap. Yes, for the most part the content during any given TV day is pretty abysmal, but there’s also some real gems if you dig for them. I’ve found some great stuff on the History Channel. Also we now get the National Geographic channel on our basic cable. I’ve seen some really good shows on that. One of them that’s currently running is a 2 hour documentary on Grand Central Station in New York. I know that sounds pretty boring to most of you but give this one 15 minutes of your time and see if you don’t get sucked into it…

Speaking of watching TV I’ve been tending to watch things that allow me to get away from thinking about my physical condition. It’s weird the things that remind me of it. I can’t watch golf for instance because it reminds me of something I used to be able to do but can’t now. But I can watch football, and basketball because in my young and healthy days I wasn’t that good at either of these. But let me know what you folks are watching and give us a small blurb as to why you like it. Include any movies or DVD’s you’ve seen lately and enjoyed…

Quite a bit has been going on in the research world. The Robert Packard Center at Johns Hopkins has just celebrated their 5 year anniversary. You should be able to access their annual report at www.alscenter.org. It’s a good report because it gives a nice summary of everything they’re working on. Things are looking up but I share the frustration of our community in how long it takes to get the human trials going…

My wife Ellen and I had the privilege of meeting with the Director of the Packard Center, Dr. Jeffrey Rothstein, about a year ago at Johns Hopkins (he still sees patients). He said that research is finally gaining some positive momentum but that much money and more bright, young researchers are needed to really drive this thing forward. Let’s all advocate for and pray that this happens…

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December 5, 2005

The ALS community lost a great friend, leader, and fellow-PALS this week with the passing of Matthew Dowd of Massachusetts. Matt shared a wealth of information on his web site, as well as being a regular contributor on the Massachusetts General Brain Talk chat board. This is a tremendous loss for our community. Matt was only 36 years old but left a rich legacy behind. Thank you so much for your leadership Matt...

The ALS Association is launching their new initiative TREAT ALS (Translational Research Advancing Therapy for ALS). This one looks like a biggy. I could try to explain this but it would be far better to read the whole story at www.alsa.org. The main focus is a more coordinated (and quicker) effort at moving compounds from the research lab to clinical trials. Those of us who are already diagnosed with this yucky disease will wish this happened 10 years ago, but I applaud progress in whatever form it takes and whenever it takes place. Now on behalf of us PALS, get in those labs and go for it! As George Allen, the old football coach, used to say, “The future is now.”...

I’m very interested in hearing what you PALS and CALS are doing for recreation. I know our options are limited from what they used to be prior to our diagnosis, but it’s surprising what people are doing. Something I’m doing that may sound minor (but to me is major) is a monthly poker game held at my house. It’s a great way to get us together for a night of good times...

Did anyone watch that USC / UCLA game? Yikes...

Here’s a thought for those of you sports fans out there of which I am one (did I say that right?). Modern sports stadiums and arenas built in the last 15 years or so are remarkably user friendly to us disabled folk. Not only is the facility user friendly but the organization’s management usually is as well. Typically there are special seating areas for our wheelchairs/scooters. Also, the person you came to the event with you can sit next to you to assist you. Additionally there’s usually at least one usher who is assigned to our small sections. Call ahead to the organizations’ customer service people to get the details on how to secure these special seating areas, where to park, etc.

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