Growing up in a family of nine with only one income meant we were poor. Not the kind of poor where you struggle for food and shelter, but the kind that included wearing hand-me-down clothes as opposed to the newer, expensive clothes with labels, driving used vehicles instead of flashy new ones, and doing without all those little luxuries most people take for granted today. Cable t.v. was little more than wishful thinking, and it was almost 1990 before our family saw its first microwave and vcr. Purchasing our first vcr was momentous; the Sullivan's were actually stepping up in the world and would be able to watch something more than three fuzzy channels.
We purchased a refurbished four-head vcr from Circuit City. It cost a mint, but we didn't care. Complete with remote control, we stared at our new prize with a mixture of awe and excitement. This was, after all, the first time we had spent a lot of money on something we wanted instead of needed. On the way home we stopped at Video Vision and rented ten movies - cartoons, Disney classics, dramas we new our parents would never let us watch, and the token scary movie, The Exorcist. We arrived home, gingerly carried our beloved package into the house, then gathered around our humongous console television set and argued for the next three hours over how to install it correctly. When my parents were finally sure that everything was plugged in according to the instructions, and that the remote control batteries were, in fact, put in correctly (thank you very much!), and the vcr still would not function properly we came to one conclusion - our refurbished vcr was not so refurbished after all. In fact, the only movie the darn thing would play was The Exorcist. We tried movie after movie after movie and none of them would play. We fast-forwarded the movies and tried again. We blew heartily into the device trying to clean out any dust or debris that might have settled in. We tested each button on the front panel and the remote control. But nothing worked except The Exorcist. After all our anticipation of the big event, all our hard work, hair pulling, arguing and hopeful pleas to just try one more thing, all we could watch was the scariest movie of all time. The very next day my father took our refurbished vcr that was not so refurbished back to Circuit City and purchased a brand new one, a much newer model. We enjoyed many movies for many years on that newly bought vcr until the day came where it finally just stopped working.
As I sit here thinking about that refurbished vcr that was not so refurbished, I can't help but see the parallel between that story and the story Keith and I continue to write together. In many ways Keith is like that old vcr - he's seen better days for sure. He's run the gauntlet of life, having been through almost everything from the birth of loved ones to the loss of loved ones, relationship ups and downs, work success and layoffs. Our relationship has refurbished him, given him a new outlook and a fresh start in all matters of life, love and spirit. But like the refurbished vcr that was still mechanically broken and would only show us the scary movie, thanks to PD, Keith is mechanically broken and many times can only show the scary movie. PD has a way of rearing its scary head when you most anticipate the opposite. We can reconnect the wires, push all the buttons, try different movies, do everything that Doctor Instructions tell us to do and still, all we see is the scary movie.
I wish it was as simple as an improperly refurbished vcr. Though I would never trade him in, I do wish that I could return Keith to the specialist and say, "Something's wrong. He's not working. Fix him right this time!" I wish I could bring him home, pop in a new movie, then sit back and enjoy the show. When the picture gets a little fuzzy, I can adjust the tracking. Simple as that. Gosh, wouldn't it be nice to be able to rewind the scary movie called Parkinson's and send it right back where it came from! Of course, I would still keep the device that played it.
Sometimes I think about that old vcr and wonder what happened to it. I like to think that some dedicated employee took the time to really fix it - refurbish it the way it was originally intended. Maybe that employee put it back on the shelf for some other family to find. Maybe that family was as excited to bring it home as we were. Hopefully, that family was able to enjoy many, many movies over many, many years on that vcr. That is the same hope I have for Keith. I hope that one day science will be able to truly refurbish him. I hope that I can bring him home and with our family, enjoy many, many good movies together for many, many years to come.
Monday, January 19, 2009
Monday, January 12, 2009
Hope and Inspirations
Hope and Inspirations: The 2009 Parkinson's Disease Charity Ball has officially been scheduled.
November 28, 2009
Crystal Ballroom of The Hotel Roanoke and Conference Center, Roanoke Virginia
5 pm - 6 pm: Coctail hour (cash bar) and view/bid on the silent auction
6 pm - 7 pm: Dinner is served (Duet Plate - filet mignon and choice of seared salmon, grilled shrimp, crabcake, asiago chicken, plus salad, potato or rice, fresh vegetables, rolls and dessert)
7 pm - 10 pm - Dance, dance, dance!
$100 a plate
Black tie/formal wear
The cash bar and silent auction will be open throughout the evening. Tickets go on sale later this week. Rooms have been reserved at the Hotel Roanoke at a discounted price for out-of-towners. There are a very limited number of free tickets for PWP wishing to attend but can't afford to. These are on a first come, first serve basis. All proceeds will go to various PD organizations, including the APDA and the Parkinson's Foundation.
At this time, we can not accept credit card orders. We apologize for any inconvenience. Checks should be made out to The Parkinson's Fundraising Committee with PD Charity Ball in the memo slot of the check. Once payment is received, we will send you the numbered ticket with a separate receipt.
For more information, please email or call -
keithandmary_3@yahoo.com
434-237-0358
November 28, 2009
Crystal Ballroom of The Hotel Roanoke and Conference Center, Roanoke Virginia
5 pm - 6 pm: Coctail hour (cash bar) and view/bid on the silent auction
6 pm - 7 pm: Dinner is served (Duet Plate - filet mignon and choice of seared salmon, grilled shrimp, crabcake, asiago chicken, plus salad, potato or rice, fresh vegetables, rolls and dessert)
7 pm - 10 pm - Dance, dance, dance!
$100 a plate
Black tie/formal wear
The cash bar and silent auction will be open throughout the evening. Tickets go on sale later this week. Rooms have been reserved at the Hotel Roanoke at a discounted price for out-of-towners. There are a very limited number of free tickets for PWP wishing to attend but can't afford to. These are on a first come, first serve basis. All proceeds will go to various PD organizations, including the APDA and the Parkinson's Foundation.
At this time, we can not accept credit card orders. We apologize for any inconvenience. Checks should be made out to The Parkinson's Fundraising Committee with PD Charity Ball in the memo slot of the check. Once payment is received, we will send you the numbered ticket with a separate receipt.
For more information, please email or call -
keithandmary_3@yahoo.com
434-237-0358
Parkinson's vs. Clueless Husband
Confusion, confusion, confusion . . . . . oh where do I begin?
I don't normally write about the negative aspects of my marriage, mainly because there aren't any. Keith and I have been blissfully sailing along in our lives together, seemingly on a never-ending honeymoon. We are very much in love, rarely fight and have always had great communication. But recently, Big Boy Shaky has been in the dog house. This has put me in a perpetual state of "what the hell am I doing?" Am I really justified in putting him in the dog house for being a clueless husband, or am I overreacting to his PD limitation? Let's take a look at a few of these instances and judge whether Keith was a clueless husband, or struggling with PD:
1. Keith and I have a "mixed marriage." I am Catholic, he is not. Two years ago when we had our daughter baptized, I asked for the paperwork that would give Keith an annulment from his ex-wife. This needs to be done so that the Church will recognise our marriage. I wanted to renew our vows in a small ceremony at my church on our five year anniversary. Now, I know that this is one of the Catholic rules most Protestants don't understand or agree with, and Keith is no exception. But he did promise me that he would get it done. So here we are, two years later with our five year anniversary fast approaching, and the annulment has not been completed. He hasn't even filled out all the paperwork. I have often wondered if maybe the stress of all the red tape involved was affecting his PD. I thought that maybe the act of sitting still long enough to do the paperwork would be too difficult for him. But no, that's not it at all. His only excuse for not getting the annulment is that because he's not Catholic, he doesn't really understand what the big deal is. Needless to say, I'm a little bummed. A far more accurate statement would be that I'm very hurt and deeply disappointed. This clearly falls into the Clueless Husband category.
2. This incident occurred just last night - Keith decided at 10:30 pm that he wanted to fry up some oysters. While I never grudge anyone their choice of late night snack, I did have a moment or two of "oh no!" when he broke out the frying pan. I had a feeling I would be stuck with all those dirty dishes, and I was right. When I woke up this morning there was a pile of dirty dishes in the sink, stinky leftovers in the trash and bits of food left on the stove. I was mad. My initial reaction was, "What the hell is wrong with him?! Why does he have to make such a huge meal that late and leave me the mess to clean up? **BLEEP, BLEEP, BLEEP** But I changed my tune once I thought about it a little more. After all, he did wash the dishes for me a few hours earlier in the evening. And fried oysters do take some time to make, which means Keith was standing in one spot cooking for a good twenty minutes. At one point I asked if I could help him, but when he said "yeah, you can cook these for me," I just laughed and walked away. I walked away, sat down and propped my feet up on the sofa, and watched t.v. So although my first reaction to this was Clueless Husband, I have to face reality and put this into the Struggling with PD file. (And I think I plunged head-first into the selfish wife category on this one).
3. One of the many things I have done to ensure that we all survive each day with our busy schedules is to assign chores. These are very specific chores that I need done around the house on certain days each week. It's nothing too difficult, mainly just a bit of dusting and wiping down the bathrooms. I was very picky when deciding upon Keith's chores because I wanted to make sure he could do them with ease. Monday, Wednesday and Friday he is to wipe down the bathroom with disinfectant wipes. Just go over the sink and the toilet - no big scrubbing or anything. On Tuesday dust the living room, and on Thursday vacuum the living room. All chores that can easily be accomplished in fifteen minutes or less, even with PD. After months of nothing getting done and feeling like a total jerk for even giving him chores to do, I finally asked what the problem was. "Why can't you at least dust? Everything is chest level, no lifting or bending, and the Swiffer has an extended handle to help you reach everything. What's the problem?" I asked. I got a blank stare. "I don't know how to dust," he said. WHAT?!?!? You walk around the room and wipe stuff down with a frilly, fluffy pad stuck to the end of a stick. How difficult can it possibly be? This, CLEARLY, is a Clueless Husband issue.
So you see, it isn't always easy to judge whether or not I'm dealing with Clueless Husband or Struggling with PD Husband. It's beginning to take a toll on me. I don't want to believe that Keith would use PD as an excuse to get out of housework, nor do I want to believe that simple, daily activities are becoming too difficult for him to handle. I have no idea how to respond either way. I feel guilty for asking him to help. If I don't ask for help, I feel like an unappreciated housewife. Where is the middle ground? Perhaps there is no middle ground. Maybe, due to the nature of the disease and its progression, life for us will always be a constant ebb and flow; a push and pull of inconsistencies, good intentions, wrong perceptions and failed attempts. The important thing is to remember that we are in this together and we are both learning as we go. Somewhere along the way we have learned to cut each other some slack, pick up where the other left off, and to forgive a life with PD.
I don't normally write about the negative aspects of my marriage, mainly because there aren't any. Keith and I have been blissfully sailing along in our lives together, seemingly on a never-ending honeymoon. We are very much in love, rarely fight and have always had great communication. But recently, Big Boy Shaky has been in the dog house. This has put me in a perpetual state of "what the hell am I doing?" Am I really justified in putting him in the dog house for being a clueless husband, or am I overreacting to his PD limitation? Let's take a look at a few of these instances and judge whether Keith was a clueless husband, or struggling with PD:
1. Keith and I have a "mixed marriage." I am Catholic, he is not. Two years ago when we had our daughter baptized, I asked for the paperwork that would give Keith an annulment from his ex-wife. This needs to be done so that the Church will recognise our marriage. I wanted to renew our vows in a small ceremony at my church on our five year anniversary. Now, I know that this is one of the Catholic rules most Protestants don't understand or agree with, and Keith is no exception. But he did promise me that he would get it done. So here we are, two years later with our five year anniversary fast approaching, and the annulment has not been completed. He hasn't even filled out all the paperwork. I have often wondered if maybe the stress of all the red tape involved was affecting his PD. I thought that maybe the act of sitting still long enough to do the paperwork would be too difficult for him. But no, that's not it at all. His only excuse for not getting the annulment is that because he's not Catholic, he doesn't really understand what the big deal is. Needless to say, I'm a little bummed. A far more accurate statement would be that I'm very hurt and deeply disappointed. This clearly falls into the Clueless Husband category.
2. This incident occurred just last night - Keith decided at 10:30 pm that he wanted to fry up some oysters. While I never grudge anyone their choice of late night snack, I did have a moment or two of "oh no!" when he broke out the frying pan. I had a feeling I would be stuck with all those dirty dishes, and I was right. When I woke up this morning there was a pile of dirty dishes in the sink, stinky leftovers in the trash and bits of food left on the stove. I was mad. My initial reaction was, "What the hell is wrong with him?! Why does he have to make such a huge meal that late and leave me the mess to clean up? **BLEEP, BLEEP, BLEEP** But I changed my tune once I thought about it a little more. After all, he did wash the dishes for me a few hours earlier in the evening. And fried oysters do take some time to make, which means Keith was standing in one spot cooking for a good twenty minutes. At one point I asked if I could help him, but when he said "yeah, you can cook these for me," I just laughed and walked away. I walked away, sat down and propped my feet up on the sofa, and watched t.v. So although my first reaction to this was Clueless Husband, I have to face reality and put this into the Struggling with PD file. (And I think I plunged head-first into the selfish wife category on this one).
3. One of the many things I have done to ensure that we all survive each day with our busy schedules is to assign chores. These are very specific chores that I need done around the house on certain days each week. It's nothing too difficult, mainly just a bit of dusting and wiping down the bathrooms. I was very picky when deciding upon Keith's chores because I wanted to make sure he could do them with ease. Monday, Wednesday and Friday he is to wipe down the bathroom with disinfectant wipes. Just go over the sink and the toilet - no big scrubbing or anything. On Tuesday dust the living room, and on Thursday vacuum the living room. All chores that can easily be accomplished in fifteen minutes or less, even with PD. After months of nothing getting done and feeling like a total jerk for even giving him chores to do, I finally asked what the problem was. "Why can't you at least dust? Everything is chest level, no lifting or bending, and the Swiffer has an extended handle to help you reach everything. What's the problem?" I asked. I got a blank stare. "I don't know how to dust," he said. WHAT?!?!? You walk around the room and wipe stuff down with a frilly, fluffy pad stuck to the end of a stick. How difficult can it possibly be? This, CLEARLY, is a Clueless Husband issue.
So you see, it isn't always easy to judge whether or not I'm dealing with Clueless Husband or Struggling with PD Husband. It's beginning to take a toll on me. I don't want to believe that Keith would use PD as an excuse to get out of housework, nor do I want to believe that simple, daily activities are becoming too difficult for him to handle. I have no idea how to respond either way. I feel guilty for asking him to help. If I don't ask for help, I feel like an unappreciated housewife. Where is the middle ground? Perhaps there is no middle ground. Maybe, due to the nature of the disease and its progression, life for us will always be a constant ebb and flow; a push and pull of inconsistencies, good intentions, wrong perceptions and failed attempts. The important thing is to remember that we are in this together and we are both learning as we go. Somewhere along the way we have learned to cut each other some slack, pick up where the other left off, and to forgive a life with PD.
Tuesday, December 30, 2008
It's All In How You Look At It
I realize it's not appropriate to post from a private support group onto a public blog, so I'll just post my own response.
A lady posted on an online support group about entering into a relationship with a man several years her senior who had been recently diagnosed with PD. There were some supportive replies and a lot of not-so-supportive replies. Here is mine, copied and pasted:
I know all too well the apprehension and trepidation of entering into a relationship with a man who has PD. My dh is 23 years my senior. We each have a child from previous marriages, and have decide to start a family of our own. We have a two year old and are trying for another. The nay'sayers and flame-throwers are limitless. You have to develop a thick skin to be in our shoes.
I have to agree with pretty much everything ---- said. I couldn't have said it better myself. The best advice I can give at this point is to base your decision on what you DO know, not on what you DON'T know.What you DON'T know is regarding what ---- addressed - children.
1. Yes, your innocent children may be afflicted with PD. It is no secret that PD can be and in many cases IS, inherited. But so can a slew of other illnesses. No one wants to risk passing on such a horrible disease to their children. And it is a huge risk, no doubt. But you don't know that you will pass it on. If we based our decision to have children on what we could potentially pass on to them, no one would have kids. Alcoholism, mental illness, cancer, diabetes, alzheimers, down's syndrome - the list goes on and on. You could try to adopt, yes, but that could prove to be very challenging. There are not many agencies out there willing to give a child to a family with PD. The decision to have children with this man will be a hard one to make, but base it on what you know will happen, not what 'could' happen.
2. You will essentially have to be a single mom at some point. Because you don't know how the disease will progress, you don't know when that time will come. Hopefully, not until the children are grown, or at least up in size. But you do need to be prepared for the possibility that you will be the sole provider, financially, emotionally, physically. Having said that, again I have to say that you don't know what will happen. Your loved one may be perfectly capable of helping you with the kids. It's not an all or nothing thing either. If you are able to think outside the box and be a little creative, you should be able to work around many of the PD issues. Example - I make sure to purchase clothing and shoes my dh can put on my daughter. Elastic waists, loose tops, lots of dresses, velcro shoes. And we co-sleep, which gives him a ton of close, physical bonding time with her each day that he would otherwise not be able to do. Also, because PD affects his voice and facial expressions, singing and reading to our daughter with great expression and exaggerated emphasis is a good way to incorporate voice exercises into a normal play routine. So you see, there are many creative ways to work around these issues.
3. Yes, children need both parents. No one is going to argue that. But a disabled parent is not an absent parent. Yes, all children would prefer to have both parents healthy, and yes there are a million ways to teach compassion, empathy, kindness and understanding without imposing this situation on them. BUT, each child's reaction to PD has much more to do with their own personality than anything else. How else to you account for the parents who raise their kids to be persons of strong character, yet the child ends up in jail? Or the parents who are total losers and abuse the kids, but one grows up to be president? You can only raise your child in the best way you know how - the rest is up to them. That is true whether you have PD in the family or not. Yes, this does present a special challenge to children. I see it everyday in my own home. I am not blind to the fact that PD affects children. But the fact is, kids grow up to be angry, resentful and pissed off for a lot of other reasons besides having a father with PD.
As I said, base your decision on what you DO know. You DO know that PD is a progessive, degenerative, neurological disorder. You do know the symptoms and how they can affect your loved one. Get as much information as possible. Join online support communities, as you have done here. Network, network, network - join local support groups, make friends with PD patients and their carepartners. Surround yourself with a group of individuals who truly understands your situation. These are the people you will need to be able to fall back on to help you through, whether it be emotional support for you, helping you take care of your spouse and/or the kids, or helping you get some housework done. You will find that there are many people out there willing to help if you open up and let them in.
If you venture into this relationship, keep in mind that most people are not going to be supportive, at least in the beginning. You may feel very much alone at times. But if you truly love him, then go for it. We all want someone to love us, even those with PD. And loving a man with PD is no cakewalk for sure. But you need to be able to find the good in it somehow. Take what is good, hold it close and run with it. Don't let PD dictate how you live your life.
Prepare for the worst but hope for the best. If you need to make financial arrangements, then do so. You may need to move to a house more handicapped accessible, or downsize to a one-story. You may need to give up the extra vehicle to pay for extra insurance. Like most of us, I am sure you are not rich, so you will need to prepare for the future. But that doesn't mean you have to live your life as if you can't make a single move because of PD. PD can rob you of so much, so live your life to the fullest while you still can.
My dh worries all the time about not being able to provide me with the kind of life that he feels I deserve. I think that is inevitable of anyone with PD - most feel at some point as if they are a burden. You will need to give him a ton of encouragement and support. What you say to him matters much more than you may realize. This is where you will need to get creative and think outside the box. If he is worried about not contributing equally, especially if you have kids, then this is the time to show him how he can contribute in ways that he may be unaccustomed to, things that may be unconventional. Go out of your way to prove to him that what he is able to do is very important to you and very helpful.
Most of all, tell him every single day how much you love him, and why.
Good luck in all you do! My prayers are with you and yours!
A lady posted on an online support group about entering into a relationship with a man several years her senior who had been recently diagnosed with PD. There were some supportive replies and a lot of not-so-supportive replies. Here is mine, copied and pasted:
I know all too well the apprehension and trepidation of entering into a relationship with a man who has PD. My dh is 23 years my senior. We each have a child from previous marriages, and have decide to start a family of our own. We have a two year old and are trying for another. The nay'sayers and flame-throwers are limitless. You have to develop a thick skin to be in our shoes.
I have to agree with pretty much everything ---- said. I couldn't have said it better myself. The best advice I can give at this point is to base your decision on what you DO know, not on what you DON'T know.What you DON'T know is regarding what ---- addressed - children.
1. Yes, your innocent children may be afflicted with PD. It is no secret that PD can be and in many cases IS, inherited. But so can a slew of other illnesses. No one wants to risk passing on such a horrible disease to their children. And it is a huge risk, no doubt. But you don't know that you will pass it on. If we based our decision to have children on what we could potentially pass on to them, no one would have kids. Alcoholism, mental illness, cancer, diabetes, alzheimers, down's syndrome - the list goes on and on. You could try to adopt, yes, but that could prove to be very challenging. There are not many agencies out there willing to give a child to a family with PD. The decision to have children with this man will be a hard one to make, but base it on what you know will happen, not what 'could' happen.
2. You will essentially have to be a single mom at some point. Because you don't know how the disease will progress, you don't know when that time will come. Hopefully, not until the children are grown, or at least up in size. But you do need to be prepared for the possibility that you will be the sole provider, financially, emotionally, physically. Having said that, again I have to say that you don't know what will happen. Your loved one may be perfectly capable of helping you with the kids. It's not an all or nothing thing either. If you are able to think outside the box and be a little creative, you should be able to work around many of the PD issues. Example - I make sure to purchase clothing and shoes my dh can put on my daughter. Elastic waists, loose tops, lots of dresses, velcro shoes. And we co-sleep, which gives him a ton of close, physical bonding time with her each day that he would otherwise not be able to do. Also, because PD affects his voice and facial expressions, singing and reading to our daughter with great expression and exaggerated emphasis is a good way to incorporate voice exercises into a normal play routine. So you see, there are many creative ways to work around these issues.
3. Yes, children need both parents. No one is going to argue that. But a disabled parent is not an absent parent. Yes, all children would prefer to have both parents healthy, and yes there are a million ways to teach compassion, empathy, kindness and understanding without imposing this situation on them. BUT, each child's reaction to PD has much more to do with their own personality than anything else. How else to you account for the parents who raise their kids to be persons of strong character, yet the child ends up in jail? Or the parents who are total losers and abuse the kids, but one grows up to be president? You can only raise your child in the best way you know how - the rest is up to them. That is true whether you have PD in the family or not. Yes, this does present a special challenge to children. I see it everyday in my own home. I am not blind to the fact that PD affects children. But the fact is, kids grow up to be angry, resentful and pissed off for a lot of other reasons besides having a father with PD.
As I said, base your decision on what you DO know. You DO know that PD is a progessive, degenerative, neurological disorder. You do know the symptoms and how they can affect your loved one. Get as much information as possible. Join online support communities, as you have done here. Network, network, network - join local support groups, make friends with PD patients and their carepartners. Surround yourself with a group of individuals who truly understands your situation. These are the people you will need to be able to fall back on to help you through, whether it be emotional support for you, helping you take care of your spouse and/or the kids, or helping you get some housework done. You will find that there are many people out there willing to help if you open up and let them in.
If you venture into this relationship, keep in mind that most people are not going to be supportive, at least in the beginning. You may feel very much alone at times. But if you truly love him, then go for it. We all want someone to love us, even those with PD. And loving a man with PD is no cakewalk for sure. But you need to be able to find the good in it somehow. Take what is good, hold it close and run with it. Don't let PD dictate how you live your life.
Prepare for the worst but hope for the best. If you need to make financial arrangements, then do so. You may need to move to a house more handicapped accessible, or downsize to a one-story. You may need to give up the extra vehicle to pay for extra insurance. Like most of us, I am sure you are not rich, so you will need to prepare for the future. But that doesn't mean you have to live your life as if you can't make a single move because of PD. PD can rob you of so much, so live your life to the fullest while you still can.
My dh worries all the time about not being able to provide me with the kind of life that he feels I deserve. I think that is inevitable of anyone with PD - most feel at some point as if they are a burden. You will need to give him a ton of encouragement and support. What you say to him matters much more than you may realize. This is where you will need to get creative and think outside the box. If he is worried about not contributing equally, especially if you have kids, then this is the time to show him how he can contribute in ways that he may be unaccustomed to, things that may be unconventional. Go out of your way to prove to him that what he is able to do is very important to you and very helpful.
Most of all, tell him every single day how much you love him, and why.
Good luck in all you do! My prayers are with you and yours!
Friday, November 14, 2008
Explaining and Asking
Lately I have found myself in a bit of a quandary. It has become more difficult to explain Keith's physical limitations, in turn making it more difficult to ask those around us for help. How do you explain a person being "in between?" Keith is not physically disabled, yet he is definitely on a downhill slope. If you can't make others understand the physical limitations of one not yet disabled, how do you explain the need for help?
I have always been proud of the fact that my husband was one of those urban legends or myths you hear about. You know - the guy that doesn't mind washing dishes, changing dirty diapers or throwing a load of laundry in the washer. When my girlfriends and I get together the conversation usually rolls around to whining about husbands and why they never help out around the house. I have always been able to boast that MY husband will do anything I ask. I did not need to nag or badger him - I simply asked. But recently things have changed. I don't mind that things have changed as I understand why. The PD is progessing and Keith just can't do what he used to do. I rarely ask him to help around the house anymore because I feel so guilty asking him to do anything other than rest. So now when I get together with my friends I try to explain to them that Keith can't help out anymore. They roll their eyes and get quiet. I know what they are thinking - if he can work 50 hours a week then he should be able to take out the trash. Hell, I've had that very same thought many times. I have since come to understand that once Keith reaches his limit, he's done. He has a certain amount of time each day when he feels energetic and productive. Once that time is up, it's up. He needs to rest from that point on or he'll be in worse shape the next day. I know it. It's not so easy for others to see it.
Keith and Bryan recently attended a PD educational conference. During the Q&A a man asked how he could get his family and friends to help him. The answer - ask. Ask for help. Seems simple enough, especially for a PWP much more progessed than Keith. But this solution presents a couple problems for me. First of all, I have never been good at asking for anything, especially help. Call it being stubborn, call it having too much pride, call it what you will. I just don't like asking for help, particularly from my family. Second, a large part of me still believes that if they really cared they would see for themselves that Keith needs help, and then I wouldn't have to ask.
Speaking strictly of my family, I hear a lot of Oh he's fine! or He's still getting around okay. He'll be alright! or Don't worry. He's a tough guy! Every once in awhile when I try to tell it like it is, I get Oh man! Hmmm . . . yeah, that's too bad. What a shame! I know they mean well. I know they are trying to make me feel better, make me believe that he will in fact, be just fine. But I wish they would finally stop trying to gloss over the reality of what actually IS. What they see is a man who works 50+ hours a week and is rebuilding a 69 Camaro. They see a man doting on his children, planning to have another. They don't see the full picture and trying to explain it to them is next to impossible. Seeing is believing, so they say. And because of what they see, they simply do not believe how difficult it is for Keith to do so many different things. Maybe he will have to be in a wheelchair before anyone else gets it and offers help. Maybe I just need to suck it up and learn how to ask for help.
I have always been proud of the fact that my husband was one of those urban legends or myths you hear about. You know - the guy that doesn't mind washing dishes, changing dirty diapers or throwing a load of laundry in the washer. When my girlfriends and I get together the conversation usually rolls around to whining about husbands and why they never help out around the house. I have always been able to boast that MY husband will do anything I ask. I did not need to nag or badger him - I simply asked. But recently things have changed. I don't mind that things have changed as I understand why. The PD is progessing and Keith just can't do what he used to do. I rarely ask him to help around the house anymore because I feel so guilty asking him to do anything other than rest. So now when I get together with my friends I try to explain to them that Keith can't help out anymore. They roll their eyes and get quiet. I know what they are thinking - if he can work 50 hours a week then he should be able to take out the trash. Hell, I've had that very same thought many times. I have since come to understand that once Keith reaches his limit, he's done. He has a certain amount of time each day when he feels energetic and productive. Once that time is up, it's up. He needs to rest from that point on or he'll be in worse shape the next day. I know it. It's not so easy for others to see it.
Keith and Bryan recently attended a PD educational conference. During the Q&A a man asked how he could get his family and friends to help him. The answer - ask. Ask for help. Seems simple enough, especially for a PWP much more progessed than Keith. But this solution presents a couple problems for me. First of all, I have never been good at asking for anything, especially help. Call it being stubborn, call it having too much pride, call it what you will. I just don't like asking for help, particularly from my family. Second, a large part of me still believes that if they really cared they would see for themselves that Keith needs help, and then I wouldn't have to ask.
Speaking strictly of my family, I hear a lot of Oh he's fine! or He's still getting around okay. He'll be alright! or Don't worry. He's a tough guy! Every once in awhile when I try to tell it like it is, I get Oh man! Hmmm . . . yeah, that's too bad. What a shame! I know they mean well. I know they are trying to make me feel better, make me believe that he will in fact, be just fine. But I wish they would finally stop trying to gloss over the reality of what actually IS. What they see is a man who works 50+ hours a week and is rebuilding a 69 Camaro. They see a man doting on his children, planning to have another. They don't see the full picture and trying to explain it to them is next to impossible. Seeing is believing, so they say. And because of what they see, they simply do not believe how difficult it is for Keith to do so many different things. Maybe he will have to be in a wheelchair before anyone else gets it and offers help. Maybe I just need to suck it up and learn how to ask for help.
Monday, November 10, 2008
Consider the film SHAKEN as a holiday gift!
Deborah Fryer of Lila Films is offering a HUGE discount for all PWP and their family and friends who wish to order the film SHAKEN. If you order online the price is $150, which is the price for medical schools, PD organizations, libraries, doctors, etc. But if you are a PWP (or a family member or a friend) you can contact Deborah directly to get SHAKEN at just $29.99!! That is quite a big savings!!! Support groups can purchase SHAKEN at a discount as well, for $75.
Because every 9 minutes someone is newly diagnosed with PD, Deborah will donate 9% of proceeds back to the PD cause! How wonderful is that! (Be sure to reference "Life With Shaky" or "Mary Sullivan" when ordering).
Click on the SHAKEN link to the left of the screen for more information, or contact Deborah at -
shaken@lilafilms.com
303-442-1966
I am putting together a list of institutions and organizations that I will soon contact to purchase SHAKEN. If you would like to add yours to my list, please contact me through the comments section of this blog, or by email -
keithandmary_3@yahoo.com
We are looking forward to lots of sales!!!!!
Because every 9 minutes someone is newly diagnosed with PD, Deborah will donate 9% of proceeds back to the PD cause! How wonderful is that! (Be sure to reference "Life With Shaky" or "Mary Sullivan" when ordering).
Click on the SHAKEN link to the left of the screen for more information, or contact Deborah at -
shaken@lilafilms.com
303-442-1966
I am putting together a list of institutions and organizations that I will soon contact to purchase SHAKEN. If you would like to add yours to my list, please contact me through the comments section of this blog, or by email -
keithandmary_3@yahoo.com
We are looking forward to lots of sales!!!!!
Thursday, October 30, 2008
Can We Ignore Parkinson's?
Don't we all wish we could ignore Parkinson's? Wouldn't it be nice if we could simply pretend that it doesn't exist? How difficult or easy would it be?
I am usually up to my neck in PD - research, support groups, conferences, fundraising, blogging. Sometimes I get tired of dealing with it all, so I just stop. I stop blogging for awhile. I don't read PD related emails. I ignore all the invitations to PD events. When it becomes too much I simply pretend like it doesn't exist. I drop it at the door like a muddy pair of boots. But as much as I would like to simply turn it off, I never can. I have spent a lot of time online recently doing pretty much every thing I can think of except anything having to do with PD. (well, okay - I have exchanged a few emails with PD friends and my partner working on the charity ball) I made a point to see how long I could go ignoring PD. I wanted to find out how stressful all my extra curricular PD activities actually are, and if ignoring them would somehow, in some way, return my life to "normal," the way if was before PD. Turns out, you can't ignore PD.
While I may have been able to temporarily turn my back on blogging, support groups, etc., I can never turn my back on my husband. It is virtually impossible to ignore what PD is doing to Keith. I can not ignore his exhaustion, the tremors, the stiffness, the reminders to take his medication on time. I certainly could not ignore the guilt I felt over my little experiment. Who am I to turn my back on PD when Keith will never be able to? If anything, he will have to devote more and more time to it as the disease progesses. Trying to reconcile that difference has been more stressful and more painful than actually facing PD head-on.Since Keith's diagnosis, always in the back of mind are two words repeated over and over - do something. I hear it constantly. Do something, do something, do something, do something, do something. While I can't stop the progession of PD in Keith and I certainly can't make it all go away, much as I'd like, I CAN do something. I can do a lot of something. Through blogging and activism, I can reach out to others in similar positions. I can educate those that may know very little about PD, or help their loved ones and caregivers understand that they are not alone. I can help raise awareness and put together events to fund more research for a cure. I can (I hope) inspire others to continue living their lives, PD and all, to the fullest, never taking one day, one moment, for granted. If I ignore PD then I put an end to what Keith and I feel is our mission - to educate, advocate and inspire, and that just won't do.
I realized that I genuinely enjoy all that I do in the PD community. It has become such a part of me that to ignore it would be attempting to ignore a large part of who I am. To turn my back on PD is to turn my back on Keith, because every single thing I do related to PD is ultimately for him. So to answer my own question - no, I can not ignore Parkinson's, nor do I want to.
I am usually up to my neck in PD - research, support groups, conferences, fundraising, blogging. Sometimes I get tired of dealing with it all, so I just stop. I stop blogging for awhile. I don't read PD related emails. I ignore all the invitations to PD events. When it becomes too much I simply pretend like it doesn't exist. I drop it at the door like a muddy pair of boots. But as much as I would like to simply turn it off, I never can. I have spent a lot of time online recently doing pretty much every thing I can think of except anything having to do with PD. (well, okay - I have exchanged a few emails with PD friends and my partner working on the charity ball) I made a point to see how long I could go ignoring PD. I wanted to find out how stressful all my extra curricular PD activities actually are, and if ignoring them would somehow, in some way, return my life to "normal," the way if was before PD. Turns out, you can't ignore PD.
While I may have been able to temporarily turn my back on blogging, support groups, etc., I can never turn my back on my husband. It is virtually impossible to ignore what PD is doing to Keith. I can not ignore his exhaustion, the tremors, the stiffness, the reminders to take his medication on time. I certainly could not ignore the guilt I felt over my little experiment. Who am I to turn my back on PD when Keith will never be able to? If anything, he will have to devote more and more time to it as the disease progesses. Trying to reconcile that difference has been more stressful and more painful than actually facing PD head-on.Since Keith's diagnosis, always in the back of mind are two words repeated over and over - do something. I hear it constantly. Do something, do something, do something, do something, do something. While I can't stop the progession of PD in Keith and I certainly can't make it all go away, much as I'd like, I CAN do something. I can do a lot of something. Through blogging and activism, I can reach out to others in similar positions. I can educate those that may know very little about PD, or help their loved ones and caregivers understand that they are not alone. I can help raise awareness and put together events to fund more research for a cure. I can (I hope) inspire others to continue living their lives, PD and all, to the fullest, never taking one day, one moment, for granted. If I ignore PD then I put an end to what Keith and I feel is our mission - to educate, advocate and inspire, and that just won't do.
I realized that I genuinely enjoy all that I do in the PD community. It has become such a part of me that to ignore it would be attempting to ignore a large part of who I am. To turn my back on PD is to turn my back on Keith, because every single thing I do related to PD is ultimately for him. So to answer my own question - no, I can not ignore Parkinson's, nor do I want to.
Just A Reminder
We only have two months left of shopping at Life With Shaky to bring in more funds for The American Parkinson's Disease Association!
Come on guys! Let's give the APDA a hefty chunk of change this year!!! Shop, shop, shop!!!!
Come on guys! Let's give the APDA a hefty chunk of change this year!!! Shop, shop, shop!!!!
Thursday, October 2, 2008
For Those Interested -
From Kathryn M. Martin, Public Affairs/Patient Advocacy Manager at MediciGlobal -
“In 5 minutes or less, your input can help us help others. We’re creating materials about an upcoming Parkinson’s Disease (PD) clinical study, and we'd like to know how you rate the headlines and designs. This survey is anonymous, so we won’t ask for any identifying information. By clicking on the following link you will be connected to our questions: https://www.surveymonkey.com/s.aspx?sm=_2fbQTKCMj5hJsShlmxJjsWQ_3d_3d. We appreciate your feedback!”
“In 5 minutes or less, your input can help us help others. We’re creating materials about an upcoming Parkinson’s Disease (PD) clinical study, and we'd like to know how you rate the headlines and designs. This survey is anonymous, so we won’t ask for any identifying information. By clicking on the following link you will be connected to our questions: https://www.surveymonkey.com/s.aspx?sm=_2fbQTKCMj5hJsShlmxJjsWQ_3d_3d. We appreciate your feedback!”
Saturday, September 27, 2008
Sacrifice and the Things I Thought I Knew
Last night I was sitting on our large front porch thinking about sacrifice and how it relates to PD and our situation. I always go back and forth on this one. Some people, I know, feel I am sacrificing a lot to be the wife of a PWP. Do I feel that way? Well, yes and no. Last night while sitting on the porch I was specifically thinking about the porch itself, and how much I love it. I love that huge, covered, wrap-around porch. I love the house attached to the porch, and I really love the view from the porch. It is a fact that one day we will have to give it all up. Financially there is no way for us to pay off the house and build an addition. We need a larger house, but we also need a paid-for house. Not going to happen here. While there are several other options available to us, we know with certainty that the first house we purchased together, the house our daughter was born in, we will have to give up. Our house has fallen victim to PD.
Sacrifice. We will sacrifice our house, our home, to ease the financial burden of the future. I will be sad to leave the home I so dearly love, but as always, I will be okay. We will be okay. But it's just a house. I can make any house a home for us. What about all the other sacrifices made in the name of PD? Can I list them all, one by one? And if so, would it be a wise thing to do? Would it embitter me and make me angry? Would it make me sad and depressed? I don't think so . . . .
See, here's the thing about sacrifice - it's not always about what you've lost. I have found that sacrifice is much more about what you gain. In Mitch Albom's book The Five People You Meet In Heaven, the character named Captain says this of sacrifice -
" . . . Sacrifice is a part of life. It's supposed to be. It's not something to regret. It's something to aspire to. Little sacrifices. Big sacrifices. A mother works so her son can go to school. A daughter moves home to take care of her sick father. . . . That's the thing. Sometimes when you sacrifice something precious, you're not really losing it. You're just passing it on to someone else."
So listing all the sacrifices I have personally made for PD wouldn't necessarily be a bad thing. Certainly not if they are supposed to happen, as a normal part of life. But there is a big problem in listing all my sacrifices. I don't really feel as if I am sacrificing anything, except for my home. So many people have pointed them all out to me -
I am sacrificing my youth.
I am sacrificing the large family I have always wanted to have.
I am sacrificing my financial security and my retirement.
I am sacrificing my children having a young and healthy father.
I am sacrificing my emotional and spiritual well being.
I am sacrificing my home.
Over and over again I hear it all, from family and friends with the best of intentions, to nosy strangers in the checkout line at Walmart. Everyone is wrought with sorrow and regret and an opinion about what I am sacrificing in my marriage to a middle aged man with PD.
But what about my choices? Where does choice and decision come into play? I agree that technically I may be sacrificing all of the above, but if sacrifice is a part of life and something to aspire to, and if I willingly made these choices and decided to live this life, then all these sacrifices have become noble rather than regretful.
I knew from day one there was a very high probability of Keith being diagnosed with PD. I saw the tremors on our first date. The writing was on the wall, so to speak. I decided to enter into a relationship with a man that in all likelihood, would be diagnosed with PD. I decided to marry that same man, and have his children. All the things that go along with loving and being married to a PWP have been choices and decisions I have made, WE have made, together. It really takes the edge off sacrifice when it becomes a choice.
It's all the things I didn't know that ring true of sacrifice now. For instance, I knew that one day our daughter would be too heavy for Keith to pick up and hold. What I didn't know was how disappointing it would be when that day came much sooner than expected. I knew that when my son recently bought his first guitar he would want Keith to show him how to play and that Keith would have a difficult time doing so. What I didn't know was how my heart would leap into my throat with pride at my son's loving, thoughtful and understanding reaction to Keith's inability to play guitar with him. I knew that the symptoms of PD include facial masking and apathy. What I didn't know was how difficult it would be to no longer read my husband's emotions and thoughts in his face. I knew that stress and excitement would cause Keith's tremors to become more pronounced. What I didn't know was that simply telling a story about a stressful event that took place more than five years ago could still cause his tremors to worsen. I didn't know how angry I would become at total strangers getting impatient with Keith for walking slowly in front of them at the grocery store. I didn't know that feeling Keith's tremors in the middle of the night would be gut wrenching and deeply comforting all at the same time. I didn't know that I would hate his hobby for robbing me of time with him, but still be grateful to it for keeping him happy and motivated. I didn't know that I would be so willing to sacrifice nearly every single thing I have to keep Keith healthy. I didn't know it would become so important to me to have children with this man for reasons no one else seems to understand. I didn't know I would get so little support and understanding from those closest to me. I didn't know that an elderly PWP sitting in a wheelchair could teach me so much without ever saying a word. I didn't know how much I would enjoy attending a PD support group. I didn't know I could love someone other than my children so completely and unconditionally. I didn't know that my biggest fears and greatest dreams could coincide and happen all at the same time. I didn't know that I would be given so much more than I ever hoped for.
What is sacrifice without the choice and decision that precedes it? I made the choice to live this life, sacrifices and all. Yes, there were many, many things I did not know would materialize when I made that choice. Perhaps you could call that sacrifice. On paper, or this blog, maybe it doesn't always look so good. Hell, some people could get depressed just by reading this post. But regardless of how it all looks, regardless of all the sacrifices being made, in my heart I truly feel as if I have it all. These are not sacrifices made because of PD. They are decisions made in the name of love. I have a good man who loves me dearly and adores our children, who would move heaven and earth to make us happy. I have great kids who make me proud everyday. I have a nice home in a nice neighborhood. I have the proverbial life - the little house with the white picket fence. I have a wonderful life of which no sacrifice is too great. That I do know.
Sacrifice. We will sacrifice our house, our home, to ease the financial burden of the future. I will be sad to leave the home I so dearly love, but as always, I will be okay. We will be okay. But it's just a house. I can make any house a home for us. What about all the other sacrifices made in the name of PD? Can I list them all, one by one? And if so, would it be a wise thing to do? Would it embitter me and make me angry? Would it make me sad and depressed? I don't think so . . . .
See, here's the thing about sacrifice - it's not always about what you've lost. I have found that sacrifice is much more about what you gain. In Mitch Albom's book The Five People You Meet In Heaven, the character named Captain says this of sacrifice -
" . . . Sacrifice is a part of life. It's supposed to be. It's not something to regret. It's something to aspire to. Little sacrifices. Big sacrifices. A mother works so her son can go to school. A daughter moves home to take care of her sick father. . . . That's the thing. Sometimes when you sacrifice something precious, you're not really losing it. You're just passing it on to someone else."
So listing all the sacrifices I have personally made for PD wouldn't necessarily be a bad thing. Certainly not if they are supposed to happen, as a normal part of life. But there is a big problem in listing all my sacrifices. I don't really feel as if I am sacrificing anything, except for my home. So many people have pointed them all out to me -
I am sacrificing my youth.
I am sacrificing the large family I have always wanted to have.
I am sacrificing my financial security and my retirement.
I am sacrificing my children having a young and healthy father.
I am sacrificing my emotional and spiritual well being.
I am sacrificing my home.
Over and over again I hear it all, from family and friends with the best of intentions, to nosy strangers in the checkout line at Walmart. Everyone is wrought with sorrow and regret and an opinion about what I am sacrificing in my marriage to a middle aged man with PD.
But what about my choices? Where does choice and decision come into play? I agree that technically I may be sacrificing all of the above, but if sacrifice is a part of life and something to aspire to, and if I willingly made these choices and decided to live this life, then all these sacrifices have become noble rather than regretful.
I knew from day one there was a very high probability of Keith being diagnosed with PD. I saw the tremors on our first date. The writing was on the wall, so to speak. I decided to enter into a relationship with a man that in all likelihood, would be diagnosed with PD. I decided to marry that same man, and have his children. All the things that go along with loving and being married to a PWP have been choices and decisions I have made, WE have made, together. It really takes the edge off sacrifice when it becomes a choice.
It's all the things I didn't know that ring true of sacrifice now. For instance, I knew that one day our daughter would be too heavy for Keith to pick up and hold. What I didn't know was how disappointing it would be when that day came much sooner than expected. I knew that when my son recently bought his first guitar he would want Keith to show him how to play and that Keith would have a difficult time doing so. What I didn't know was how my heart would leap into my throat with pride at my son's loving, thoughtful and understanding reaction to Keith's inability to play guitar with him. I knew that the symptoms of PD include facial masking and apathy. What I didn't know was how difficult it would be to no longer read my husband's emotions and thoughts in his face. I knew that stress and excitement would cause Keith's tremors to become more pronounced. What I didn't know was that simply telling a story about a stressful event that took place more than five years ago could still cause his tremors to worsen. I didn't know how angry I would become at total strangers getting impatient with Keith for walking slowly in front of them at the grocery store. I didn't know that feeling Keith's tremors in the middle of the night would be gut wrenching and deeply comforting all at the same time. I didn't know that I would hate his hobby for robbing me of time with him, but still be grateful to it for keeping him happy and motivated. I didn't know that I would be so willing to sacrifice nearly every single thing I have to keep Keith healthy. I didn't know it would become so important to me to have children with this man for reasons no one else seems to understand. I didn't know I would get so little support and understanding from those closest to me. I didn't know that an elderly PWP sitting in a wheelchair could teach me so much without ever saying a word. I didn't know how much I would enjoy attending a PD support group. I didn't know I could love someone other than my children so completely and unconditionally. I didn't know that my biggest fears and greatest dreams could coincide and happen all at the same time. I didn't know that I would be given so much more than I ever hoped for.
What is sacrifice without the choice and decision that precedes it? I made the choice to live this life, sacrifices and all. Yes, there were many, many things I did not know would materialize when I made that choice. Perhaps you could call that sacrifice. On paper, or this blog, maybe it doesn't always look so good. Hell, some people could get depressed just by reading this post. But regardless of how it all looks, regardless of all the sacrifices being made, in my heart I truly feel as if I have it all. These are not sacrifices made because of PD. They are decisions made in the name of love. I have a good man who loves me dearly and adores our children, who would move heaven and earth to make us happy. I have great kids who make me proud everyday. I have a nice home in a nice neighborhood. I have the proverbial life - the little house with the white picket fence. I have a wonderful life of which no sacrifice is too great. That I do know.
Subscribe to:
Posts (Atom)
