I got a lot of feedback from my last post about courage.....I like feedback. It causes me to keep thinking , sometimes along different lines...
The last couple of days my thoughts have turned towards the people who enable others to have courage. You might call these people encouragers......they empower people like me, my brother Eddie, my friend Dan ( who also has PD+MSA), my friend Ben, and my brother Larry...they empower us to have that courage, that hope, that spirit.
Don't get me wrong, a person has to be wired a certain way to begin with to have courage. There are lots of people , who in the face of illness or adversity just give up. They show no sign of hope, courage, spirit- zip, nada, none. However, as wonderful, courageous, spirited, determined as I made my oldest brother out to be in my last post, I now want to shine the light in another direction.
These people - I referred to earlier as "encouragers" are every day people who have risen or are rising to a challenge. A challenge which sometimes sweeps away everything in it's path with no regard for anything or anyone. Who are these people ?
CAREGIVERS
One simple word that encompasses a world of sacrifice, love , victories, losses, pain, and ultimately usually grief.
Caregivers usually find themselves thrust into situations they did not plan for such as having to go from home maker to bread winner or vice versa in the case of male cargivers caring for a disabled spouse or elderly parent, or disabled child. They have to learn new skills like giving injections, dealing with bed sores, keeping catheters clean, learning how to use a feeding tube or cope with physical demands like moving a person from bed to chair or car.
Their resources, life savings , homes can dry up and blow away like dust in the wind in the face of mounting medical costs and limited or no income. Other family members may disagree with decisions or actions by the caregiver without thinking about how their judgements might affect the caregiver or the patient.
And on top of all the obstacles, decisions, hardships and crisis situations the caregiver must deal with daily they almost always also sit and watch a loved one suffer, deteriorate , and die. No matter how much they do, how hard they try, how many prayers are said or tears are shed.....in the end the caregiver is left to wonder .....Did I do all I could ? What if I had done this....or that....Why did this happen to me ? To us ? Why can't I fix this ?
One caregiver I know commented that she was in awe of the way her husband handled himself in dealing with PD. Another caregiver has shared many painful stories about how they just can't cope. There is no paycheck. Friends and Family rarely understand the sacrifices that the caregiver may have to make in order to get the job done. I recently saw a TV documentary about parents caring for their children who were wounded in Iraq or Afghanistan and came home requiring constant care and assistance. The government usually provides a pension for that person, but who pays the caregiver who has to give up their life, their job , sometimes the rest of their family ?
There is another word for Caregivers that quite possibly suits them better.
HEROES
Yes, they are truly heroes. In every sense of the word.
My wonderful wife recently admitted that in a dark corner of her mind she sometimes wonders if she is up to the challenge of what is to come. I am sure every caregiver wonders about that at some point. Most just keep on getting up literally and figuratively for whatever challenge the next day brings.
So, the next time you meet someone who is disabled or has some type of disease that is going to affect them the rest of their life....try to see the big picture. They may have courage beyond compare , no doubt , just like both my brothers , my friends Dan and Ben...but ultimately their is someone standing close beside them, ready to help, always there , looking for the next challenge, enduring the pain of watching something happen to someone they love that is out of their control. Dealing with the world, family members, doctors, medicare, insurance companies and anyone or anything else that comes their way.
These are the forgotten heroes. These are OUR heroes. We will leave them behind to pick up the pieces, rebuild and recover if they can. When you see one...be sure to let them know that you see what they are doing and that it is important and appreciated. Be quick to praise and slow to judge. Tell them what a great job they are doing. They need that in order to do what they must do.
To all my blog friend caregivers, you know who you are, I appreciate you. You're doing wonderful , great things. You are all heroes.....
Shaaky
Wednesday, February 3, 2010
Friday, January 29, 2010
COURAGE
The other day I was visiting my older brother and his wife. Sitting on the sofa talking about whatever......very pleasant. Although none of us siblings stay in touch as much as we should, as we have gotten older, we have all realized that there is a time stamp if you will...and we now talk more than we ever used to.
Although all four of us boys are different, there are some things that we have ALL had an interest in at some point in time. Cars in general springs to mind....one of us has had three or four Starsky and Hutch Torino replicas, one of us fooled around with a Chevelle and a pretty cool Torino back in the day. I am the die hard lifelong drag race fanatic and my oldest brother with whom I was visiting shares my passion for NHRA drag racing.
I remember once when I was racing a 67 Camaro there was some welding to be done and I had never done any welding....so he gave it a try and got the job done- without using a welding helmet. Burned his eyes pretty good, spent days with raw potato slices over his eyes trying to fix his eyes. The old days.....
I learned a lot from him....how to make a square braid keychain.....how to rot a muffler from the inside so that it sounds cool without buying a performance muffler (give us a break - it was the 60's).....how to body surf and live to tell about it.....Of course he became a Dad first being the oldest and he was a great Dad as his kids grew up and I just watched and learned....
Being the oldest, I guess I always looked up to him. He was cool. Very popular with lots of friends and as I grew up I turned out a lot like him as far as career choices, personality, etc. We even worked for the same company for a few years. At one point, he ran the starting line and I did tech inspections and ran the staging lanes at the local drag strip on the weekends. Remember the jet cars ? He would hit the start button on the christmas tree, turn his back and go into a fetal crouch while two jet cars kicked the afterburners and roared off the starting line inches away on either side ! Courage !
Yep, I learned much more than what it is written here and today....I am still learning and he is still teaching. We are more alike than we ever dreamed....You see, he has Parkinsons too....except with a cruel twist. On top of the PD there is multiple system atrophy. He really can't speak now...or walk...or eat (feeding tube) ...we communicate with a letter board where spells out words and sentences by pointing. We still talk drag racing and discuss whats going on in the NHRA and I keep him posted on my progress with my 69 Camaro.
As I sat there with he and his wife he still has that light in his eyes and a shit eatin grin on his face when he is amused by the conversation around him. While I was there he decided to show me the physical therapy exercises he does to try and slow the muscle deterioration. As he slowly raised his legs with the ankle weights strapped on or pulled against the rubber stretch cords while his wife held the other end and counted his repititions I was struck by the courage and determination it must take from him each day. And yet, he still has a grin and a thumbs up for me whenever I stop in to visit.
This people, is real courage. I hope he knows how much I learned from him over the years and how much I am still learning even now. As I said we are a lot alike. I don't think there is anyone else who can teach me what you are teaching me now....so keep teaching. And I will keep trying to learn and hope that I can be like you and have that same spirit and courage !
Shaaky
Although all four of us boys are different, there are some things that we have ALL had an interest in at some point in time. Cars in general springs to mind....one of us has had three or four Starsky and Hutch Torino replicas, one of us fooled around with a Chevelle and a pretty cool Torino back in the day. I am the die hard lifelong drag race fanatic and my oldest brother with whom I was visiting shares my passion for NHRA drag racing.
I remember once when I was racing a 67 Camaro there was some welding to be done and I had never done any welding....so he gave it a try and got the job done- without using a welding helmet. Burned his eyes pretty good, spent days with raw potato slices over his eyes trying to fix his eyes. The old days.....
I learned a lot from him....how to make a square braid keychain.....how to rot a muffler from the inside so that it sounds cool without buying a performance muffler (give us a break - it was the 60's).....how to body surf and live to tell about it.....Of course he became a Dad first being the oldest and he was a great Dad as his kids grew up and I just watched and learned....
Being the oldest, I guess I always looked up to him. He was cool. Very popular with lots of friends and as I grew up I turned out a lot like him as far as career choices, personality, etc. We even worked for the same company for a few years. At one point, he ran the starting line and I did tech inspections and ran the staging lanes at the local drag strip on the weekends. Remember the jet cars ? He would hit the start button on the christmas tree, turn his back and go into a fetal crouch while two jet cars kicked the afterburners and roared off the starting line inches away on either side ! Courage !
Yep, I learned much more than what it is written here and today....I am still learning and he is still teaching. We are more alike than we ever dreamed....You see, he has Parkinsons too....except with a cruel twist. On top of the PD there is multiple system atrophy. He really can't speak now...or walk...or eat (feeding tube) ...we communicate with a letter board where spells out words and sentences by pointing. We still talk drag racing and discuss whats going on in the NHRA and I keep him posted on my progress with my 69 Camaro.
As I sat there with he and his wife he still has that light in his eyes and a shit eatin grin on his face when he is amused by the conversation around him. While I was there he decided to show me the physical therapy exercises he does to try and slow the muscle deterioration. As he slowly raised his legs with the ankle weights strapped on or pulled against the rubber stretch cords while his wife held the other end and counted his repititions I was struck by the courage and determination it must take from him each day. And yet, he still has a grin and a thumbs up for me whenever I stop in to visit.
This people, is real courage. I hope he knows how much I learned from him over the years and how much I am still learning even now. As I said we are a lot alike. I don't think there is anyone else who can teach me what you are teaching me now....so keep teaching. And I will keep trying to learn and hope that I can be like you and have that same spirit and courage !
Shaaky
Wednesday, January 20, 2010
A Glimpse into the mind.....
I recently reconnected with an old friend of mine via Facebook. Joel and I worked together about 8 or 9 years ago. We were both "bouncers" at one of the largest night clubs on the east coast. Joel was the head bouncer. Young, buff, cocky in a quiet confident way and experienced. Me ? Older, not buff, the inexperienced new guy. Not confident in any way about being a bouncer. I really didn't know what I was doing or what I was getting myself into....
I only knew -
1) I was newly single
2) I was bored and lonely
3) I wanted to do something fun and exciting instead moping around at home
And so it began.
White collar sales manager by day.....Patrick Swayze in Road House at night. Well, maybe not quite that bad but sometimes it got pretty wild. My.....the stories I could tell ...back to my point.
When Joel and I chatted on Facebook we were remembering our adventures as bouncers and as the chat continued, he told me that I was "bad assed" back in the day. Don't get me wrong, he wasn't saying I was mean, tough, or violent. He meant that I had "skills" as the teenagers like to say these days. When I humbly objected that I wasn't that good Joel made it clear that his compliment was sincere. Needless to say it was flattering and made me feel very good.
That exchange on Facebook started me thinking about confidence. How we gain it and also how we lose it.
When I was a young man I gained confidence in several areas. Working on cars, especially hot rods, driving race cars, outdoor skills as a boy scout and later competitive pistol shooting and building custom handguns. In the business world I developed my sales and project management skills. I found that if I put my mind to it and worked or practiced long enough I developed the skills which led to confidence in that area. I was and continue to be a very competitive person.
Confidence results when we work and practice at something until we know we are good at it. Right ?
One area that I lacked confidence was in physical confrontation. I wasn't a fighter. So, when I signed on as a bouncer it was with fear and anxiety. However, in Joel I had a great teacher and apparently I was a good student. So how does this relate to Parkinsons ?
One of the first things I noticed after I was diagnosed three years ago was a keen lack of confidence. The reason this is important is simple. Most people can see the physical affects PD has on a person very easily. But few can "see" the emotional affects. My wife easily understands my physical limitations but she struggles at times to even know about the battles within my mind much less how those battles might affect me. This is a glimpse into the mind of a PD patient on a topic that I feel sure we all deal with....erosion of confidence.
When a PD patient is under stress and the adrenlin kicks in most of the time the result is tremors or shaking. Physically uncomfortable, very visible, but what about the mental cost?
Well, I can only relate my own experience.
For me, in the beginning, I started to wonder how people viewed my shaking. If I had to "write up" an employee or even terminate one, would they view my tremors as weakness ? Would they think I was intimadated ? What about my wife ? Every couple disagrees now and then. If we were nagging at each other and you know you are going to shake....will she think I am about to lose my temper and attack her ? Or would she think I was about to have a heart attack ? You wonder. And when you wonder ...you begin to doubt....can I still manage people effectively ?
This issue pops up all the time. A simple battery installation. Obviously my skill with hand tools is no longer what it used to be. Do I do it anyway and hope the customer will understand the extra time it will take me ? Do I delegate it to one of my employees ? Will that employee view me as a lazy boss ? Resent me ? Think maybe I am no longer able to do my job ? You wonder . You begin to doubt. You start to lose the edge, the confidence.
Driving a car is more of a challenge now than a passion. The other night I ran up against a curb by accident. Probably wouldn't have happened four years ago. My wife said nothing. But I know what she was thinking and it hurt and made me angry all at the same time. Again, you wonder...how long before I shouldn't drive ? And you doubt. And day by day, little by little your confidence slips away without anyone but you seeing or knowing. It drives you ...insane at times. And other times it drives you to push harder, like that chain link fence around my yard that Mary said I couldn't put up. Did I ? Hell yes with a little help I did it my damn self. Nearly killed me but I did it. In those moments, when you triumph in spite of the disease, you swell with pride and confidence, but only briefly. Those moments are fewer and fewer now. And the wonder, doubt and erosion of confidence (which leads to self worth issues) creep in more and more.
Mary claims my only approach to fighting my PD is to look it in the face and say " I won't let this stop me from living my life " and mostly that has been the case. And that it is very important to me. She can plainly see the physical battles fought daily.
However, only I am privy to the many, many conversations with myself about wonder, doubt and confidence. Only I know how many times doubt or lack of confidence stops me or slows me every single day.
On the bright side, after three years I have learned that I can indeed still do most anything but slower and more cautious now. Mary has been wonderful, encouraging me most of the time even as I am sure she questions in her own mind.
Bryan, my grown son is a constant source of encouragement and help. He reminds me that I am Keith Lewis and I can do anything I set my mind to.
And Joel. Who reminded me that I am bad assed, or was....I had skills.
Some skills are still there , others , not so much. You won't see me throwing anyone out the door of the bar....
In closing, I want to share some things I learned as a bouncer:
1) Vomit is the most slippery substance in the universe. Mobil 1 synthetic oil most certainly must be made from recycled puke.
2) I hate stupid drunks, have no use for them.
3) A full nelson hold is of no use on anyone taller than you are. It will land you in the floor.
4)Bored bouncers will stoop to almost anything to instigate a small riot so we can have fun too.
5) There is no worse sound than someone's fist smashing someone's face. Over and over.
6) Drunks can find confidence in a bottle. It's not the real thing. But it's often fun to watch.
7) Break Stuff recorded by Limp Biskit will nearly always guarantee some bouncer fun !
8) Two women fighting are harder to break up and throw out than ANY four guys.
9) You can get the phone numbers of lots of women , they like bouncers.
10) Watch out for the quiet ones. The loud talkers are just that ....loud talkers.
Hope you enjoyed this one and maybe it helps someone underestand the battles of the mind......
Shaaky
I only knew -
1) I was newly single
2) I was bored and lonely
3) I wanted to do something fun and exciting instead moping around at home
And so it began.
White collar sales manager by day.....Patrick Swayze in Road House at night. Well, maybe not quite that bad but sometimes it got pretty wild. My.....the stories I could tell ...back to my point.
When Joel and I chatted on Facebook we were remembering our adventures as bouncers and as the chat continued, he told me that I was "bad assed" back in the day. Don't get me wrong, he wasn't saying I was mean, tough, or violent. He meant that I had "skills" as the teenagers like to say these days. When I humbly objected that I wasn't that good Joel made it clear that his compliment was sincere. Needless to say it was flattering and made me feel very good.
That exchange on Facebook started me thinking about confidence. How we gain it and also how we lose it.
When I was a young man I gained confidence in several areas. Working on cars, especially hot rods, driving race cars, outdoor skills as a boy scout and later competitive pistol shooting and building custom handguns. In the business world I developed my sales and project management skills. I found that if I put my mind to it and worked or practiced long enough I developed the skills which led to confidence in that area. I was and continue to be a very competitive person.
Confidence results when we work and practice at something until we know we are good at it. Right ?
One area that I lacked confidence was in physical confrontation. I wasn't a fighter. So, when I signed on as a bouncer it was with fear and anxiety. However, in Joel I had a great teacher and apparently I was a good student. So how does this relate to Parkinsons ?
One of the first things I noticed after I was diagnosed three years ago was a keen lack of confidence. The reason this is important is simple. Most people can see the physical affects PD has on a person very easily. But few can "see" the emotional affects. My wife easily understands my physical limitations but she struggles at times to even know about the battles within my mind much less how those battles might affect me. This is a glimpse into the mind of a PD patient on a topic that I feel sure we all deal with....erosion of confidence.
When a PD patient is under stress and the adrenlin kicks in most of the time the result is tremors or shaking. Physically uncomfortable, very visible, but what about the mental cost?
Well, I can only relate my own experience.
For me, in the beginning, I started to wonder how people viewed my shaking. If I had to "write up" an employee or even terminate one, would they view my tremors as weakness ? Would they think I was intimadated ? What about my wife ? Every couple disagrees now and then. If we were nagging at each other and you know you are going to shake....will she think I am about to lose my temper and attack her ? Or would she think I was about to have a heart attack ? You wonder. And when you wonder ...you begin to doubt....can I still manage people effectively ?
This issue pops up all the time. A simple battery installation. Obviously my skill with hand tools is no longer what it used to be. Do I do it anyway and hope the customer will understand the extra time it will take me ? Do I delegate it to one of my employees ? Will that employee view me as a lazy boss ? Resent me ? Think maybe I am no longer able to do my job ? You wonder . You begin to doubt. You start to lose the edge, the confidence.
Driving a car is more of a challenge now than a passion. The other night I ran up against a curb by accident. Probably wouldn't have happened four years ago. My wife said nothing. But I know what she was thinking and it hurt and made me angry all at the same time. Again, you wonder...how long before I shouldn't drive ? And you doubt. And day by day, little by little your confidence slips away without anyone but you seeing or knowing. It drives you ...insane at times. And other times it drives you to push harder, like that chain link fence around my yard that Mary said I couldn't put up. Did I ? Hell yes with a little help I did it my damn self. Nearly killed me but I did it. In those moments, when you triumph in spite of the disease, you swell with pride and confidence, but only briefly. Those moments are fewer and fewer now. And the wonder, doubt and erosion of confidence (which leads to self worth issues) creep in more and more.
Mary claims my only approach to fighting my PD is to look it in the face and say " I won't let this stop me from living my life " and mostly that has been the case. And that it is very important to me. She can plainly see the physical battles fought daily.
However, only I am privy to the many, many conversations with myself about wonder, doubt and confidence. Only I know how many times doubt or lack of confidence stops me or slows me every single day.
On the bright side, after three years I have learned that I can indeed still do most anything but slower and more cautious now. Mary has been wonderful, encouraging me most of the time even as I am sure she questions in her own mind.
Bryan, my grown son is a constant source of encouragement and help. He reminds me that I am Keith Lewis and I can do anything I set my mind to.
And Joel. Who reminded me that I am bad assed, or was....I had skills.
Some skills are still there , others , not so much. You won't see me throwing anyone out the door of the bar....
In closing, I want to share some things I learned as a bouncer:
1) Vomit is the most slippery substance in the universe. Mobil 1 synthetic oil most certainly must be made from recycled puke.
2) I hate stupid drunks, have no use for them.
3) A full nelson hold is of no use on anyone taller than you are. It will land you in the floor.
4)Bored bouncers will stoop to almost anything to instigate a small riot so we can have fun too.
5) There is no worse sound than someone's fist smashing someone's face. Over and over.
6) Drunks can find confidence in a bottle. It's not the real thing. But it's often fun to watch.
7) Break Stuff recorded by Limp Biskit will nearly always guarantee some bouncer fun !
8) Two women fighting are harder to break up and throw out than ANY four guys.
9) You can get the phone numbers of lots of women , they like bouncers.
10) Watch out for the quiet ones. The loud talkers are just that ....loud talkers.
Hope you enjoyed this one and maybe it helps someone underestand the battles of the mind......
Shaaky
Saturday, January 9, 2010
INEVITABLITY
In previous posts I have spent some time exploring the certainty of dying and acceptance of that forgone conclusion. The subject is explained best in Mitch Albom's book, Tuesdays with Morrie and oddly accepting your own death actually frees you to live the rest of your days with a much better outlook on life in general. Don't worry, I'm not going to get on that soap box again. I bring this up as an introduction to another self realization....
If you follow my wife's blog, Life with Shaky, you may know that over the last year we have sturggled with a decision about keeping or selling our home. The initial question arose because Mary felt we should be moving toward planning for the time when I cannot work or take care of the day to day duties of maintaining a home due to PD. A scuffle ensued so to speak....me standing firmly against acceptance of the thought of selling our home which would mean me losing my shop where I love to play with hot rods. After all, I'm not dead yet, I am still a successful general manager for an auto parts retailer, I am in the middle of building a pro street 1969 Camaro.....and so it goes.
Mary on the other hand was likely seeing things more clearly than I would like to admit but in the end I prevailed. More like I won the battle only to lose the war.
Now, 12-18 months later the subject is back on the table again albeit for other reasons.
Things change. Always there is change and just when you think you have most everything under control you wake up one day and the things you were prepared to deal with are not the same things that you actually have to deal with because things changed. Sometimes change happens slowly , other times almost over night.
In the last 18 months.....Who Knew?
- that Mary and I would agree to have one more child which would mean we would lose her income for some time.
- that the company I work for would change the bonus structure essentially eliminating about $5000 from my income.
- the economy would tank in the worst way since the depression resulting in catastrophic business failures, bank bailouts, run away inflation . plummeting home values, and on and on...
And one day you wake up and realize that it's true what they say....the only constant is death and taxes so to speak. And taxes is where our story springs from....
The other day I was doing some pre work on our tax return and Mary and I were talking about when she was a single mom how she could claim the earned income credit which is a government credit that was introduced in the mid 70's to encourage people to work even if the only job they could get did not provide enough income for their needs. At the end of the year , to reward you for not sitting on your butt and living on welfare and food stamps, the government recognized that you hold a job albeit one that won't pay all the bills, and so they give you a big tax credit to offset your shortfall so to speak.
I used to be so envious of that whopped tax refund she would get....
Anyway, on a whim, I checked to see if we now qualified for the EIC and WE DID ....
With my reduced salary due to bonus structure and a freeze on merit raises for two years and little Cecila now in the picture, it is now official, even the US government recognizes that WE are in tough times.
Who Knew ?
Well, at least I am working , at a good job with good benefits. Many people aren't. And the fact that we are doing as well as we are ? Well, not long ago, I was talking to a friend about his business and I asked him to what did he attribute the continued growth of his business to in these trying economic times ? He said two words which really have stuck with me....
God's Blessing.
And if you ask me, that about says it for Mary and I too.
Who knew ? I asked earlier. Certainly , we did not anticipate all I outlined above.
But, how can I explain what drove us over the last five years to pay off nearly every single credit debt we had between us ? We started with Mary's car, then mine, and any car since then has been paid for up front. Then we knocked out all but one small credit card, and last year a whopper bank line of credit. If we hadn't done all those things we would really be in a pickle now let me tell you. Well, we're still in a pickle but it could be so much worse :-)
The fact that everything is as it is right now is two words....
God's Blessing.
So, add one more constant to the list.
Death
Taxes
GOD's Blessing !
Inevitability.
Things will change it is inevitable. How you deal with it , view it, react to it, now that is a choice each of us has to make on our own.
And no matter your choice it is all too often life defining.
In the midst of all life throws at us each day, don't forget God's Blessing.
If you follow my wife's blog, Life with Shaky, you may know that over the last year we have sturggled with a decision about keeping or selling our home. The initial question arose because Mary felt we should be moving toward planning for the time when I cannot work or take care of the day to day duties of maintaining a home due to PD. A scuffle ensued so to speak....me standing firmly against acceptance of the thought of selling our home which would mean me losing my shop where I love to play with hot rods. After all, I'm not dead yet, I am still a successful general manager for an auto parts retailer, I am in the middle of building a pro street 1969 Camaro.....and so it goes.
Mary on the other hand was likely seeing things more clearly than I would like to admit but in the end I prevailed. More like I won the battle only to lose the war.
Now, 12-18 months later the subject is back on the table again albeit for other reasons.
Things change. Always there is change and just when you think you have most everything under control you wake up one day and the things you were prepared to deal with are not the same things that you actually have to deal with because things changed. Sometimes change happens slowly , other times almost over night.
In the last 18 months.....Who Knew?
- that Mary and I would agree to have one more child which would mean we would lose her income for some time.
- that the company I work for would change the bonus structure essentially eliminating about $5000 from my income.
- the economy would tank in the worst way since the depression resulting in catastrophic business failures, bank bailouts, run away inflation . plummeting home values, and on and on...
And one day you wake up and realize that it's true what they say....the only constant is death and taxes so to speak. And taxes is where our story springs from....
The other day I was doing some pre work on our tax return and Mary and I were talking about when she was a single mom how she could claim the earned income credit which is a government credit that was introduced in the mid 70's to encourage people to work even if the only job they could get did not provide enough income for their needs. At the end of the year , to reward you for not sitting on your butt and living on welfare and food stamps, the government recognized that you hold a job albeit one that won't pay all the bills, and so they give you a big tax credit to offset your shortfall so to speak.
I used to be so envious of that whopped tax refund she would get....
Anyway, on a whim, I checked to see if we now qualified for the EIC and WE DID ....
With my reduced salary due to bonus structure and a freeze on merit raises for two years and little Cecila now in the picture, it is now official, even the US government recognizes that WE are in tough times.
Who Knew ?
Well, at least I am working , at a good job with good benefits. Many people aren't. And the fact that we are doing as well as we are ? Well, not long ago, I was talking to a friend about his business and I asked him to what did he attribute the continued growth of his business to in these trying economic times ? He said two words which really have stuck with me....
God's Blessing.
And if you ask me, that about says it for Mary and I too.
Who knew ? I asked earlier. Certainly , we did not anticipate all I outlined above.
But, how can I explain what drove us over the last five years to pay off nearly every single credit debt we had between us ? We started with Mary's car, then mine, and any car since then has been paid for up front. Then we knocked out all but one small credit card, and last year a whopper bank line of credit. If we hadn't done all those things we would really be in a pickle now let me tell you. Well, we're still in a pickle but it could be so much worse :-)
The fact that everything is as it is right now is two words....
God's Blessing.
So, add one more constant to the list.
Death
Taxes
GOD's Blessing !
Inevitability.
Things will change it is inevitable. How you deal with it , view it, react to it, now that is a choice each of us has to make on our own.
And no matter your choice it is all too often life defining.
In the midst of all life throws at us each day, don't forget God's Blessing.
Saturday, December 12, 2009
SEX, MONEY,KIDS
Catchy title huh ? Thought it might get your attention.....
It IS the subject of this post actually. The three things couples argue about most generally speaking. Often leading to divorce I might add....been there , done that.
But I digress....
These three subjects, like it or not, generate plenty of arguments amongst couples and for good reason. All three tend to generate strong feelings in any given human being. Another generaliztion would be that it is often not enough of the first two , sometimes helped along by too many of the third one ! We have all likely been there at one time or another. However, for PWP's these three little gems are often even trickier to navigate. The reason I say this is simple. Side effects.
That's right, side effects from one or more of the drugs used to treat PD can escalate these issues into the stratosphere and beyond. Mirapex , a dopamine agonist is especially interesting. You don't even have to read about the side effects, the TV commercials for this drug plainly state that Mirapex has been known to cause uncontrollable sexual urges or gambling urges. If you read about Mirepex online, you will find that some people using this drug have gambled away fortunes or spent small fortunes on sex or sexually related material. Kind of incredible and sensational but proven true.
When I was first diagnosed three years ago the only drug I took was Mirapex. A year later, Levodopa was added and by this year the dosage of both had been increased several times. Let me stop here to say that I considered Mirapex a wonder drug when it comes to sleeping at night. Without it, my legs ache, jerk, spasm, my toes curl and in general sleep is impossible and that is not an exagerration, I have gone days without sleep once when I could not get my Mirapex refilled on time. However, I am happy to say I have not had to deal with any other of the severe side effects noted above !
Unfortunately, there are lesser side effects, not commonly discussed or as prominent but no less dangerous and these apparently were nearly my undoing. As my dosage was increased, I myself did not notice the small changes occurring in my daily life. But my wife noticed.......
Mirapex causes impulse control issues on any number of levels not just when it comes to sex or money matters. For instance, I might leave going to the store for a pack of smokes and not return for two hours leaving Mary to wonder if I was dead in a ditch , broke down or being abducted by aliens. Or worse....is Keith having an affair ?
Unbeknownst to me, all the while oblivious, Mary was left to wonder where I might be when I disappeared. Maybe I started home from work but decided to stop and see a friend......or three. When my cell phone would ring I would be irritated. There she goes, checking up, nagging me to get on home. I'm a grown man, can't I stop somewhere if I want to ?
After months of this, it got worse. She would call and with obvious irritation say " Just wondering where you are at ?" (long sigh from her end of the phone, obviously pissed). This would set me off instantly. By the time I got home, we would hardly speak until finally it generally erupted into the same old argument....
Her - Where the hell have you been ? You got off at five ! ( It is now 7 ...)
Me - Can't I stop for just a minute or two if I choose ? I am SO tired of you tracking me down ...I feel like you have to know where I am every second !!! ( door slams, I go out to smoke and brood).
Another issue was my lack of patience on just about any level. I could pop a head gasket over the simplest of issues and usually did. If Mary tried to discuss something with me I would jump down her throat and accuse her of trying to start a fight intentionally.
If a thought crossed my mind , it usually came out of my mouth no matter where we might be or who might be around. It was often embarrassing or awkward once my mouth opened and then I would get that look ......and I would say "What ? What'd I do ?
If you are paying attention, you might have put together by now that ALL of these issues in some form or another are IMPULSE CONTROL issues. That's right, the same type of problem noted in the beginning of this post , just not sexual in nature or related to gambling. More subtle perhaps, less sensational, but still dangerous and very irritating. Certainly stress producing and not stress reducing.
Over time, Mary began to solve the puzzle that was my behavior. As usual , she researched, read, pondered, watched and evaluated. When the dosage was increased this last time she was able to identify increases in those impulse control issues. She had suspected the cause for a long time and even tried to talk to me about it many times only to be met with a stone wall from me. After all, I am the one on the meds, wouldn't I notice any side effects? Perhaps.....if they were big enough. The fact is I didn't notice or was unwilling to admit that I saw any change. And I was scared ....how would I sleep without Mirapex ?
Earlier I had switched from Mirapex to Requip during the day because Mirapex also causes sleep attacks. I could be driving no more than an hour trip and have to stop and take a nap along the way or risk falling asleep at the wheel. The switch to requip during the day helped that issue greatly but I was still taking Mirapex at night and even in reduced amounts it affected me.
One day, after another bitter confrontation about being gone longer or stopping multiple times before coming home, Mary made it clear that something had to change. She was at the end of her rope. So I agreed to wean off Mirapex. It wasn't easy. Sleepless, miserable nights wandering the house while everyone else slept. Juggling , playing with dosages on the other meds to find the combination that worked. After about three days, Mary said she could see a difference. I was more patient, more willing to listen with an open mind. A week into it, I started sleeping again and had stopped "wandering off the grid" for hours without warning.
I still don't rest as well as I did with Mirapex but I can get 5 good hours in before my legs get me up.
If there is a moral to this story it is simple. PWP's or others with a disease requiring meds on a daily basis MUST keep an open mind about side effects and above all trust your partner or caregiver when they see a problem. It is much easier for them to see these type of things looking from the outside in than for the patient to see themselves.
Sex, Money and Kids. Sure , we've had those arguments too......but in the end, we both know that nothing is stronger than us together. We are trying to enjoy whatever time God gives us before the bad times come and who can say if or when ? It isn't up to us after all.....
Another time, another subject, until then....
Shaaky
It IS the subject of this post actually. The three things couples argue about most generally speaking. Often leading to divorce I might add....been there , done that.
But I digress....
These three subjects, like it or not, generate plenty of arguments amongst couples and for good reason. All three tend to generate strong feelings in any given human being. Another generaliztion would be that it is often not enough of the first two , sometimes helped along by too many of the third one ! We have all likely been there at one time or another. However, for PWP's these three little gems are often even trickier to navigate. The reason I say this is simple. Side effects.
That's right, side effects from one or more of the drugs used to treat PD can escalate these issues into the stratosphere and beyond. Mirapex , a dopamine agonist is especially interesting. You don't even have to read about the side effects, the TV commercials for this drug plainly state that Mirapex has been known to cause uncontrollable sexual urges or gambling urges. If you read about Mirepex online, you will find that some people using this drug have gambled away fortunes or spent small fortunes on sex or sexually related material. Kind of incredible and sensational but proven true.
When I was first diagnosed three years ago the only drug I took was Mirapex. A year later, Levodopa was added and by this year the dosage of both had been increased several times. Let me stop here to say that I considered Mirapex a wonder drug when it comes to sleeping at night. Without it, my legs ache, jerk, spasm, my toes curl and in general sleep is impossible and that is not an exagerration, I have gone days without sleep once when I could not get my Mirapex refilled on time. However, I am happy to say I have not had to deal with any other of the severe side effects noted above !
Unfortunately, there are lesser side effects, not commonly discussed or as prominent but no less dangerous and these apparently were nearly my undoing. As my dosage was increased, I myself did not notice the small changes occurring in my daily life. But my wife noticed.......
Mirapex causes impulse control issues on any number of levels not just when it comes to sex or money matters. For instance, I might leave going to the store for a pack of smokes and not return for two hours leaving Mary to wonder if I was dead in a ditch , broke down or being abducted by aliens. Or worse....is Keith having an affair ?
Unbeknownst to me, all the while oblivious, Mary was left to wonder where I might be when I disappeared. Maybe I started home from work but decided to stop and see a friend......or three. When my cell phone would ring I would be irritated. There she goes, checking up, nagging me to get on home. I'm a grown man, can't I stop somewhere if I want to ?
After months of this, it got worse. She would call and with obvious irritation say " Just wondering where you are at ?" (long sigh from her end of the phone, obviously pissed). This would set me off instantly. By the time I got home, we would hardly speak until finally it generally erupted into the same old argument....
Her - Where the hell have you been ? You got off at five ! ( It is now 7 ...)
Me - Can't I stop for just a minute or two if I choose ? I am SO tired of you tracking me down ...I feel like you have to know where I am every second !!! ( door slams, I go out to smoke and brood).
Another issue was my lack of patience on just about any level. I could pop a head gasket over the simplest of issues and usually did. If Mary tried to discuss something with me I would jump down her throat and accuse her of trying to start a fight intentionally.
If a thought crossed my mind , it usually came out of my mouth no matter where we might be or who might be around. It was often embarrassing or awkward once my mouth opened and then I would get that look ......and I would say "What ? What'd I do ?
If you are paying attention, you might have put together by now that ALL of these issues in some form or another are IMPULSE CONTROL issues. That's right, the same type of problem noted in the beginning of this post , just not sexual in nature or related to gambling. More subtle perhaps, less sensational, but still dangerous and very irritating. Certainly stress producing and not stress reducing.
Over time, Mary began to solve the puzzle that was my behavior. As usual , she researched, read, pondered, watched and evaluated. When the dosage was increased this last time she was able to identify increases in those impulse control issues. She had suspected the cause for a long time and even tried to talk to me about it many times only to be met with a stone wall from me. After all, I am the one on the meds, wouldn't I notice any side effects? Perhaps.....if they were big enough. The fact is I didn't notice or was unwilling to admit that I saw any change. And I was scared ....how would I sleep without Mirapex ?
Earlier I had switched from Mirapex to Requip during the day because Mirapex also causes sleep attacks. I could be driving no more than an hour trip and have to stop and take a nap along the way or risk falling asleep at the wheel. The switch to requip during the day helped that issue greatly but I was still taking Mirapex at night and even in reduced amounts it affected me.
One day, after another bitter confrontation about being gone longer or stopping multiple times before coming home, Mary made it clear that something had to change. She was at the end of her rope. So I agreed to wean off Mirapex. It wasn't easy. Sleepless, miserable nights wandering the house while everyone else slept. Juggling , playing with dosages on the other meds to find the combination that worked. After about three days, Mary said she could see a difference. I was more patient, more willing to listen with an open mind. A week into it, I started sleeping again and had stopped "wandering off the grid" for hours without warning.
I still don't rest as well as I did with Mirapex but I can get 5 good hours in before my legs get me up.
If there is a moral to this story it is simple. PWP's or others with a disease requiring meds on a daily basis MUST keep an open mind about side effects and above all trust your partner or caregiver when they see a problem. It is much easier for them to see these type of things looking from the outside in than for the patient to see themselves.
Sex, Money and Kids. Sure , we've had those arguments too......but in the end, we both know that nothing is stronger than us together. We are trying to enjoy whatever time God gives us before the bad times come and who can say if or when ? It isn't up to us after all.....
Another time, another subject, until then....
Shaaky
Tuesday, December 8, 2009
HELLO OLD FRIENDS - AND NEW ONES TOO !
After almost exactly a year since my last blog entry, it feels good to be back. Lot's to share, plenty to question and hoping people will come back to read.
A high speed cable modem helps things !
A quick update before I consider my next serious post.....
Since Dec. 08....
Mary got pregnant again.
Keith increased his meds.
Mary noticed some changes associated in those increased meds.
Mary insisted Keith stop taking mirapex.
Baby Cecilia Mae is born and baby Rielly-Anne turns 3 !
Keith participates in a clinical study on reaction time and PD Meds.
Somewhere in there is a serious blog post-stay tuned !
Shaaky
A high speed cable modem helps things !
A quick update before I consider my next serious post.....
Since Dec. 08....
Mary got pregnant again.
Keith increased his meds.
Mary noticed some changes associated in those increased meds.
Mary insisted Keith stop taking mirapex.
Baby Cecilia Mae is born and baby Rielly-Anne turns 3 !
Keith participates in a clinical study on reaction time and PD Meds.
Somewhere in there is a serious blog post-stay tuned !
Shaaky
Friday, December 12, 2008
DON'T LOOK DOWN !
OR BACK FOR THAT MATTER.......
As the old saying goes, if you are way up high in a scary place, doing your best to maintain your balance, don't look down. It can only get worse if you look down. Looking back is almost as bad. If I had been looking back last night and seen that car getting ready to crash into my car .....well, lets just say I preferred the surprise over the fear. Car- totaled, Keith - shaken but not stirred.
We live in a scary world these days. Economic crisis, terrorists, war, recession, soaring unemployment, global warming....if you even glance down you could lose your balance. Blink once and down you go. Dealing with PD itself is a great challenge. Dealing with the other things that come with it may be an even greater challenge. Recently, Mary and I have been tossing around some options for our future and decisions have been made or will be made that some will find to be not so poplular while others will completely "get it" and understand.
For instance, we have pretty much decided to sell our home , pay off what little debt is left after the mortgage , then take the equity and pay for a nice mobile home in a quiet park leaving us in the blissful state of debt free. Why ? Because sooner or later I won't be able to work and we would rather plan on that now than have to scramble or risk financial burden on Mary later. It makes perfect sense to some and others think we are mad. When we bought this place neither of us planned to ever leave. Of course we had not planned on PD and we did not plan to have a child either. So our cozy, 2 BR , rustic cottage was perfect. Now, it's cramped, too small, harder for me to maintain and deal with steps...you get the picture. It is a VERY painful decision for both of us but one we need to face squarely.
For me, realizing and accepting that I won't be able to provide the kind of home I want to was hard. Giving up my hot rod garage where my grown son and I have spent countless, wonderful hours sharing a passion for cars will be heart wrenching to put it mildly.
Another polarizing landmark decision was to have another child. Actually , I think what I agreed to was to take no precautions and see what develops. Again, madness to some and inspiring to others. Mary and I got together late in my life and our age difference alone (22 years) marks us as "different". Had we both been young we would have had more than one child so we joke that we may as well continue marching to the beat of our own hearts instead of conforming to some preconceived mold dictated by society at large. At the end of the day, we are choosing to live all we can while we can.
A visit to the neurologist at UVA brought news as well. As I predicted, I am now starting Sinimet. Doc says I will feel better. Also switched from Mirapex to Requip....seem to have more energy but anyone who can tell me what I can expect from going on Sinimet , please leave me a comment....
So, how am I doing overall ?
I'M SHAKIN' A LEG !
And as long as I can do that and look forward , never looking back, I got it knocked baby......
As the old saying goes, if you are way up high in a scary place, doing your best to maintain your balance, don't look down. It can only get worse if you look down. Looking back is almost as bad. If I had been looking back last night and seen that car getting ready to crash into my car .....well, lets just say I preferred the surprise over the fear. Car- totaled, Keith - shaken but not stirred.
We live in a scary world these days. Economic crisis, terrorists, war, recession, soaring unemployment, global warming....if you even glance down you could lose your balance. Blink once and down you go. Dealing with PD itself is a great challenge. Dealing with the other things that come with it may be an even greater challenge. Recently, Mary and I have been tossing around some options for our future and decisions have been made or will be made that some will find to be not so poplular while others will completely "get it" and understand.
For instance, we have pretty much decided to sell our home , pay off what little debt is left after the mortgage , then take the equity and pay for a nice mobile home in a quiet park leaving us in the blissful state of debt free. Why ? Because sooner or later I won't be able to work and we would rather plan on that now than have to scramble or risk financial burden on Mary later. It makes perfect sense to some and others think we are mad. When we bought this place neither of us planned to ever leave. Of course we had not planned on PD and we did not plan to have a child either. So our cozy, 2 BR , rustic cottage was perfect. Now, it's cramped, too small, harder for me to maintain and deal with steps...you get the picture. It is a VERY painful decision for both of us but one we need to face squarely.
For me, realizing and accepting that I won't be able to provide the kind of home I want to was hard. Giving up my hot rod garage where my grown son and I have spent countless, wonderful hours sharing a passion for cars will be heart wrenching to put it mildly.
Another polarizing landmark decision was to have another child. Actually , I think what I agreed to was to take no precautions and see what develops. Again, madness to some and inspiring to others. Mary and I got together late in my life and our age difference alone (22 years) marks us as "different". Had we both been young we would have had more than one child so we joke that we may as well continue marching to the beat of our own hearts instead of conforming to some preconceived mold dictated by society at large. At the end of the day, we are choosing to live all we can while we can.
A visit to the neurologist at UVA brought news as well. As I predicted, I am now starting Sinimet. Doc says I will feel better. Also switched from Mirapex to Requip....seem to have more energy but anyone who can tell me what I can expect from going on Sinimet , please leave me a comment....
So, how am I doing overall ?
I'M SHAKIN' A LEG !
And as long as I can do that and look forward , never looking back, I got it knocked baby......
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