OK, that gets us current. If you are starting here PLEASE go to the first post and read at least the first one. I advise reading them all as they are part of the documentation of the progression of the disease and our mindset from then to now.
From here on I will try to post thoughts and updates with some regularity.
Comments and suggestions are welcomed.
Welcome aboard!
Saturday, February 20, 2010
Monday, February 15, 2010
And then we wept... - originally posted 3-17-09
I am not really sure what this post is to accomplish. It is a bit of a catharsis for me. I hope it will be informational for some, possibly even inspirational for others that may be going through a similar event in their life (although I profoundly hope there would be no others going through what we are - I know there are)
Sunday as we were getting ready to leave Florida for home, my wife started weeping rather uncontrollably. Being the tough macho guy that I am, I kept a stiff upper lip - for about 30 seconds. I HATE seeing my wife cry (or any other loved one), especially a sad, wailing, cry. I asked her what was wrong, but it was one of the teary events where you cannot even talk. She was brushing her teeth at the time, and between the toothpaste, toothbrush, and weeping - communication was not possible. So, I just was just there. Then I teared up myself. Watching her, a grown woman, RN, mother of six, and grandmother of two (with another on the way) not being able to really brush her teeth (we have an electric brush for home, but travel with a normal one) struck me as one of the saddest things I have ever seen. Her coordination to really do the "brushing" motion is just not there any more. So, we wept together. She for, at the time, an unknown reason; me, for what she was going through and what we have to face going forward.
As we got in the car later, she broke down again saying goodbye to her mother. I had a hard time with this one as well as I knew she was unfathomably sad. Goodbyes are always hard. As we got on the road, we composed ourselves a bit. Then we talked. Now, I don't know how many of you have or have had a loved one on death row. (actually not a great comparison as there is always a chance of the governor calling - pretty sure this is above the governor's pay grade) Talk about an elephant in the room! We have talked in small circles around it, but never really in depth or details. This was pretty much the same except she started it with a tearful look and a question that ripped at my heart. She asked me through sobs "Will this be the last time I see my mother's house? Will I die before we get back?" By now, she was crying uncontrollably and I was having trouble seeing the road. I had no witty response. I had no great comeback. I just told her - "We will make a point to.".
I don't remember exactly what was said next, or how we got there; but I told her I was very, very sorry she was sick. I told her I would give almost anything if she was not. We were now weeping again (being a tough, macho type - maybe I was just tearing up a bit - weeping sounds a bit wimpy). She told me she was sorry I had to deal with her. I told her I was where I should be. If I did not want to be where I was, I would leave. I reminded her I was in for the duration.
We rode in silence for a while. I am not sure about her, but I still found my eyes getting wet from time to time. There was once about two hours later where she had dozed off. I looked over at this woman that I married over 35 years ago. She was shaking with her Parkinson's tremors with her hands curled on her lap. She looked so helpless....and sick, I guess. I remembered how just three years ago we were saying goodbye as she headed for work. Her loss of her physical self has been amazingly rapid. I found myself reaching for a napkin to dry my eyes. Luckily, she has not lost any of her mental self. She is still crazy, funny, and enjoys a laugh. We just have to work harder to find things to laugh about.
We made it through the rest of the ride with the elephant safely in the back seat. No more discussions, no more tears. We even laughed a bit from time to time.
Sunday as we were getting ready to leave Florida for home, my wife started weeping rather uncontrollably. Being the tough macho guy that I am, I kept a stiff upper lip - for about 30 seconds. I HATE seeing my wife cry (or any other loved one), especially a sad, wailing, cry. I asked her what was wrong, but it was one of the teary events where you cannot even talk. She was brushing her teeth at the time, and between the toothpaste, toothbrush, and weeping - communication was not possible. So, I just was just there. Then I teared up myself. Watching her, a grown woman, RN, mother of six, and grandmother of two (with another on the way) not being able to really brush her teeth (we have an electric brush for home, but travel with a normal one) struck me as one of the saddest things I have ever seen. Her coordination to really do the "brushing" motion is just not there any more. So, we wept together. She for, at the time, an unknown reason; me, for what she was going through and what we have to face going forward.
As we got in the car later, she broke down again saying goodbye to her mother. I had a hard time with this one as well as I knew she was unfathomably sad. Goodbyes are always hard. As we got on the road, we composed ourselves a bit. Then we talked. Now, I don't know how many of you have or have had a loved one on death row. (actually not a great comparison as there is always a chance of the governor calling - pretty sure this is above the governor's pay grade) Talk about an elephant in the room! We have talked in small circles around it, but never really in depth or details. This was pretty much the same except she started it with a tearful look and a question that ripped at my heart. She asked me through sobs "Will this be the last time I see my mother's house? Will I die before we get back?" By now, she was crying uncontrollably and I was having trouble seeing the road. I had no witty response. I had no great comeback. I just told her - "We will make a point to.".
I don't remember exactly what was said next, or how we got there; but I told her I was very, very sorry she was sick. I told her I would give almost anything if she was not. We were now weeping again (being a tough, macho type - maybe I was just tearing up a bit - weeping sounds a bit wimpy). She told me she was sorry I had to deal with her. I told her I was where I should be. If I did not want to be where I was, I would leave. I reminded her I was in for the duration.
We rode in silence for a while. I am not sure about her, but I still found my eyes getting wet from time to time. There was once about two hours later where she had dozed off. I looked over at this woman that I married over 35 years ago. She was shaking with her Parkinson's tremors with her hands curled on her lap. She looked so helpless....and sick, I guess. I remembered how just three years ago we were saying goodbye as she headed for work. Her loss of her physical self has been amazingly rapid. I found myself reaching for a napkin to dry my eyes. Luckily, she has not lost any of her mental self. She is still crazy, funny, and enjoys a laugh. We just have to work harder to find things to laugh about.
We made it through the rest of the ride with the elephant safely in the back seat. No more discussions, no more tears. We even laughed a bit from time to time.
To Pee or not to Pee (with apologies to the Bard) - originally posted 3-12-09
I know a lot of people are crying the blues today over the economy (and justifiably so in a lot of cases). However, you have all heard the statement made - "at least you've got your health", probably a million times. If you "have your health" and have remained relatively healthy, you probably ignore the statement or mumble a "yeah" and move on.
The process of waste elimination is a pretty basic need. If you remember basic biology - taking in food and elimination of waste were signs of biological life. If you are a human, the waste elimination process has taken leaps of societal and hygienic improvements from Og and his lot heading for the other side of the bush. We now have restrooms, both public and private for the process. (where is this going?, you are probably asking by now).
As most of you know that would be reading this, my wife is in a wheelchair. She is in it because she cannot walk any longer. She can stand for short periods, but does not have the balance to walk or maneuver well. Most if not all bathroom functions require mobility. To get down to basics, my wife requires assistance for her bathroom functions. (she would probably not approve of this post - but hey, it is what it is) That is the point of this post.
Try taking a wheelchair bound person of the opposite gender to a bathroom when travelling. As I said above - "bathrooming" is a pretty basic need. My wife will signal a need for a stop and then we spend exit after exit, or rest stop after rest stop trying to find a family restroom (single party, oversized, unisex, handicapped equipped restroom becoming available slowly around the world) or a single setup with a lockable door that we can both fit into. We start looking and usually take hours finding a suitable place. It is extraordinarily frustrating to me and her - as well as being a physical challenge for her. I have the utmost respect for those that are installing the family restrooms. They are heaven sent. I just wish every rest stop would have one.
So, next time you are travelling and have the need to use the facilities; when you are able to stop, walk in, do your business, and leave in one stop - be grateful your 401K is all that has taken a hit. Hey, at least you've got your health, and an empty bladder.
The process of waste elimination is a pretty basic need. If you remember basic biology - taking in food and elimination of waste were signs of biological life. If you are a human, the waste elimination process has taken leaps of societal and hygienic improvements from Og and his lot heading for the other side of the bush. We now have restrooms, both public and private for the process. (where is this going?, you are probably asking by now).
As most of you know that would be reading this, my wife is in a wheelchair. She is in it because she cannot walk any longer. She can stand for short periods, but does not have the balance to walk or maneuver well. Most if not all bathroom functions require mobility. To get down to basics, my wife requires assistance for her bathroom functions. (she would probably not approve of this post - but hey, it is what it is) That is the point of this post.
Try taking a wheelchair bound person of the opposite gender to a bathroom when travelling. As I said above - "bathrooming" is a pretty basic need. My wife will signal a need for a stop and then we spend exit after exit, or rest stop after rest stop trying to find a family restroom (single party, oversized, unisex, handicapped equipped restroom becoming available slowly around the world) or a single setup with a lockable door that we can both fit into. We start looking and usually take hours finding a suitable place. It is extraordinarily frustrating to me and her - as well as being a physical challenge for her. I have the utmost respect for those that are installing the family restrooms. They are heaven sent. I just wish every rest stop would have one.
So, next time you are travelling and have the need to use the facilities; when you are able to stop, walk in, do your business, and leave in one stop - be grateful your 401K is all that has taken a hit. Hey, at least you've got your health, and an empty bladder.
Saturday, February 13, 2010
DRIVE - originally posted 1/18/2009
Imagine you are out for a drive. You are motoring along. Occasionally you stop to get a bite to eat or to enjoy some of the sites. But mostly you are cruising and taking in the ride.
Suddenly you realize your vehicle is going on it's own. Not too fast, not too slow, but ever moving whether you want it to or not. You realize you are not really even steering the car or choosing the exact direction you are travelling any longer. You run red lights and stop signs. You pass in no passing zones and are passed in others. But, you continue relentlessly forward. There is no reverse.
You would love to just STOP, to pull in somewhere and sit and take in the local flavor. You know, however, the only stopping you will be doing is by crashing or just running out of gas somewhere you don't want to be.
But, maybe moving towards SOMETHING is better than stopping at NOTHING.
Welcome to our life.
Suddenly you realize your vehicle is going on it's own. Not too fast, not too slow, but ever moving whether you want it to or not. You realize you are not really even steering the car or choosing the exact direction you are travelling any longer. You run red lights and stop signs. You pass in no passing zones and are passed in others. But, you continue relentlessly forward. There is no reverse.
You would love to just STOP, to pull in somewhere and sit and take in the local flavor. You know, however, the only stopping you will be doing is by crashing or just running out of gas somewhere you don't want to be.
But, maybe moving towards SOMETHING is better than stopping at NOTHING.
Welcome to our life.
Monday, February 8, 2010
A Three Hour Tour, or , Perchance to Drown - originally published 12/2/2008
Imagine you and your spouse, or significant other, are on a nice boat ride called life. You are on this inconceivably large boat in a sea of unimaginable size on a trip of indeterminate length. Once in a while, you go through some beautiful. almost indescribable days where birds sing, wonderful angelic music accompanies you in your daily activities, and everything you want is there before you. Then there are the dark and stormy days where all you can do is hold on to the rail and upchuck your lunch into the water. Most of the days, however, are just a boat ride.
One day your spouse falls overboard, fully clothed, and for no apparent reason. You quickly toss them a line, and say"hold on, I'll get you out!" There is no reason to panic, people fall into the water all the time. Plus, they are a fairly strong swimmer, we will get them out. So, you start pulling on the rope. After pulling and pulling you notice they are not any closer to the boat. You decide you need help.
You go and get the some of the lifeguards that are stationed around the boat. One by one they examine the situation. All of them, after careful thought and deep reflection based on years of training, say "They are in the water. They will surely drown. All we can do is keep them on the line from the boat, and wait." You become more and more agitated and upset. You go and get one lifeguard after another. Some haven't got a clue. All the rest just say, "At some unpredictable time in the future they will drown. Keep them nourished, provide fresh water, and here is a wonder drug in case they get cramps."
You consider going into the water yourself. However, there is no good way to get in, and definitely no way out. So, you sit by the rail and talk to your loved one about the good days where the birds sang, angelic music accompanied you, and all was before you. Meanwhile, it becomes harder and harder for your spouse to keep their head above the water. One of your greatest fears is a storm coming up and causing waves that they surely could not ride out. More and more time is spent just working to keep their head above the water. Meanwhile, you can only sit and watch.
Enjoy your cruise.
One day your spouse falls overboard, fully clothed, and for no apparent reason. You quickly toss them a line, and say"hold on, I'll get you out!" There is no reason to panic, people fall into the water all the time. Plus, they are a fairly strong swimmer, we will get them out. So, you start pulling on the rope. After pulling and pulling you notice they are not any closer to the boat. You decide you need help.
You go and get the some of the lifeguards that are stationed around the boat. One by one they examine the situation. All of them, after careful thought and deep reflection based on years of training, say "They are in the water. They will surely drown. All we can do is keep them on the line from the boat, and wait." You become more and more agitated and upset. You go and get one lifeguard after another. Some haven't got a clue. All the rest just say, "At some unpredictable time in the future they will drown. Keep them nourished, provide fresh water, and here is a wonder drug in case they get cramps."
You consider going into the water yourself. However, there is no good way to get in, and definitely no way out. So, you sit by the rail and talk to your loved one about the good days where the birds sang, angelic music accompanied you, and all was before you. Meanwhile, it becomes harder and harder for your spouse to keep their head above the water. One of your greatest fears is a storm coming up and causing waves that they surely could not ride out. More and more time is spent just working to keep their head above the water. Meanwhile, you can only sit and watch.
Enjoy your cruise.
Saturday, February 6, 2010
Even More Questions - originally posted July 30, 2008
You may get this more if you read (or re-read) these older posts: (which are now contained below - read the first post in this blog to get the drift)
"A Serious One" from 4/6/08
"Alphabet diseases" from 11/13/07 and
"Questions" from 1/20/08
I am still trying to get answers to the Questions asked in the post above. I have not found any that are worthy of printing. I have come up with more questions:
How does one handle seeing the continual decline of their spouse and not being able to do a thing about it?
How do you take the inability of your 53 year old wife to get out of bed, or in and out of the shower unaided?
How do you answer questions that beg not to be asked, like: will I see Bailey (our daughter, a rising senior)graduate; will Hannah (our granddaughter - almost 3) remember me; or will I see Landon (or grandson - 6 months) walk?
How do you comfort your bride of 35+ years when she looks at you with tears streaming down her face?
Most of all, how do you offer support and help when you are so damn mad at the world and the situation that all you want to do is scream!? When even your best efforts just don't cut it. When nothing at all makes it go away!?! When the best that doctors can do is "See you in three months".
If you are diagnosed with cancer; even one of the terrible ones, there are treatments and a chance of recovery or remission. Most cancers now have a good recovery rate. (before anyone with cancer takes offense, I am not making light of cancer, just comparisons) She does not get that. We get a gradual, progressive march downhill, with nothing to assist or offer hope.
55 is not a time to be facing the death of a spouse. There is never a good time, but with a known life expectancy in this country of well over 70+, a few decades more might have helped. 53 is definitely not the time to be facing ones own death. As frustrating as this time is for me, I cannot fathom what it must be like to be on the other side of this.
This disease is like the elephant in the room. Everyone can see it, everyone has his or her reaction to it; no one comments on it.
Our kids have stepped it up since the "Questions" post of above. I still get asked "How is your wife?" from people that just want to hear - O.K. or at worst - "about the same". I appreciate the thought (when asked sincerely, not conversationally), I just get weary of the answer.
Down enough yet? I know I am.
Comments welcomed, support for my wife - demanded.
"A Serious One" from 4/6/08
"Alphabet diseases" from 11/13/07 and
"Questions" from 1/20/08
I am still trying to get answers to the Questions asked in the post above. I have not found any that are worthy of printing. I have come up with more questions:
How does one handle seeing the continual decline of their spouse and not being able to do a thing about it?
How do you take the inability of your 53 year old wife to get out of bed, or in and out of the shower unaided?
How do you answer questions that beg not to be asked, like: will I see Bailey (our daughter, a rising senior)graduate; will Hannah (our granddaughter - almost 3) remember me; or will I see Landon (or grandson - 6 months) walk?
How do you comfort your bride of 35+ years when she looks at you with tears streaming down her face?
Most of all, how do you offer support and help when you are so damn mad at the world and the situation that all you want to do is scream!? When even your best efforts just don't cut it. When nothing at all makes it go away!?! When the best that doctors can do is "See you in three months".
If you are diagnosed with cancer; even one of the terrible ones, there are treatments and a chance of recovery or remission. Most cancers now have a good recovery rate. (before anyone with cancer takes offense, I am not making light of cancer, just comparisons) She does not get that. We get a gradual, progressive march downhill, with nothing to assist or offer hope.
55 is not a time to be facing the death of a spouse. There is never a good time, but with a known life expectancy in this country of well over 70+, a few decades more might have helped. 53 is definitely not the time to be facing ones own death. As frustrating as this time is for me, I cannot fathom what it must be like to be on the other side of this.
This disease is like the elephant in the room. Everyone can see it, everyone has his or her reaction to it; no one comments on it.
Our kids have stepped it up since the "Questions" post of above. I still get asked "How is your wife?" from people that just want to hear - O.K. or at worst - "about the same". I appreciate the thought (when asked sincerely, not conversationally), I just get weary of the answer.
Down enough yet? I know I am.
Comments welcomed, support for my wife - demanded.
Friday, February 5, 2010
A serious one - originally posted April 6,2008
If you have not read the first post in this blog - please do so. All this is based around the first post.
I wanted to do a blog on perspective. Life and our evaluation of it is based a LOT on perspective. I got a great example of this yesterday.
My wife is disabled!! Officially. Perspective - - -
On face value, that would not appear to be a good thing. Disability is not to be cheered. Ah, official disability is (or can be). My seventeen year old was here yesterday when my wife opened the letter and we were cheering for disability. She made a comment that is was weird that we were happy with Mom being disabled. I explained we weren't, but...
My wife's condition is affected not one bit by what the doctors, bureaucrats, or anyone else labels it. She is no more nor no less disabled or ill than prior to getting the letter. However, getting the letter signifies official legal acceptance of her disability. That will hopefully lead to a lessening of the financial burdens of her condition and let us deal exclusively with the physical ones.
I think I mentioned before how during the diagnosis stage, my wife and I found ourselves cheering and wishing for a diagnosis of MS or Parkinson's. Not to say both of those diseases are not horrific and life changing in their own right, but... Perspective - - -
The other diagnosis we were faced with was of a magnitude worse -MSA. I wrote a blog a while back about the alphabet diseases. The addition of an "A" to "M" and "S" takes a horrible disease and makes it imminently more horrible.
In our discussions about disease and disability my wife commented on her possibility of having MS and/or Parkinson's. I said "I know I was pulling for you to have one of them as well." That caused another comment from my daughter about how we were weird. I had to explain to her it is all about perspective.
Let's have a round of applause for my wife's official disability. From anyone else's perspective that may sound strange. From here it is receiving a standing ovation.
I wanted to do a blog on perspective. Life and our evaluation of it is based a LOT on perspective. I got a great example of this yesterday.
My wife is disabled!! Officially. Perspective - - -
On face value, that would not appear to be a good thing. Disability is not to be cheered. Ah, official disability is (or can be). My seventeen year old was here yesterday when my wife opened the letter and we were cheering for disability. She made a comment that is was weird that we were happy with Mom being disabled. I explained we weren't, but...
My wife's condition is affected not one bit by what the doctors, bureaucrats, or anyone else labels it. She is no more nor no less disabled or ill than prior to getting the letter. However, getting the letter signifies official legal acceptance of her disability. That will hopefully lead to a lessening of the financial burdens of her condition and let us deal exclusively with the physical ones.
I think I mentioned before how during the diagnosis stage, my wife and I found ourselves cheering and wishing for a diagnosis of MS or Parkinson's. Not to say both of those diseases are not horrific and life changing in their own right, but... Perspective - - -
The other diagnosis we were faced with was of a magnitude worse -MSA. I wrote a blog a while back about the alphabet diseases. The addition of an "A" to "M" and "S" takes a horrible disease and makes it imminently more horrible.
In our discussions about disease and disability my wife commented on her possibility of having MS and/or Parkinson's. I said "I know I was pulling for you to have one of them as well." That caused another comment from my daughter about how we were weird. I had to explain to her it is all about perspective.
Let's have a round of applause for my wife's official disability. From anyone else's perspective that may sound strange. From here it is receiving a standing ovation.
Thursday, February 4, 2010
Questions - originally posted 1/20/2008
There are two blogs that I have been thinking of writing for a while. This is one of them.
What do you say to a person you love and have lived with for over three decades when they turn to you and say with tears in their eyes, "I don't want to die"?
What do you do when you have kids and family members that just ask "How is she doing?" and just want to hear "Fine", or "About the same"; even if it is not true?
How do you make people understand that you are living with it every day and that it is not going away and that it is hard? Hard for those of us around her, but even harder for her.
How can you watch your wife of thirty-four plus years not able to get out of bed or up a single step unassisted when you still see her as the eighteen year old you married?
How do you answer a 53 year old that asks you if she will see her daughter, a junior, graduate from high school?
How do you get your kids to get off their asses and recognize their mother needs them? (with one exception, Steph) Not later, NOW!
How do you respond to a social security ruling that denies disability so your insurance is going up to more than your rent every month? How do you deal with insurance and government people that are on a timetable that is slower than a glacier?
What do you do to help when you have seen, in eleven months, a progression from walking slowly, to walking with a cane, to a rollator/walker sometimes - cane sometimes, to a rollator / walker all the time, to a wheelchair sometimes?
How do you convince someone to go out when every movement is a tremendous effort and one of your biggest fears is seeing someone you know or used to work with?
What do you do when you are a control freak and things are out of your control, no matter how hard you try?
I do NOT want any sympathy for me. I am not going to say I am not human. I am not going to say this was not a release for me. But comments on my condition are irrelevant. Sympathy, compassion, concern, and love for my wife is demanded. She needs all of you.
Questions need answering. I don't have the answers.
What do you say to a person you love and have lived with for over three decades when they turn to you and say with tears in their eyes, "I don't want to die"?
What do you do when you have kids and family members that just ask "How is she doing?" and just want to hear "Fine", or "About the same"; even if it is not true?
How do you make people understand that you are living with it every day and that it is not going away and that it is hard? Hard for those of us around her, but even harder for her.
How can you watch your wife of thirty-four plus years not able to get out of bed or up a single step unassisted when you still see her as the eighteen year old you married?
How do you answer a 53 year old that asks you if she will see her daughter, a junior, graduate from high school?
How do you get your kids to get off their asses and recognize their mother needs them? (with one exception, Steph) Not later, NOW!
How do you respond to a social security ruling that denies disability so your insurance is going up to more than your rent every month? How do you deal with insurance and government people that are on a timetable that is slower than a glacier?
What do you do to help when you have seen, in eleven months, a progression from walking slowly, to walking with a cane, to a rollator/walker sometimes - cane sometimes, to a rollator / walker all the time, to a wheelchair sometimes?
How do you convince someone to go out when every movement is a tremendous effort and one of your biggest fears is seeing someone you know or used to work with?
What do you do when you are a control freak and things are out of your control, no matter how hard you try?
I do NOT want any sympathy for me. I am not going to say I am not human. I am not going to say this was not a release for me. But comments on my condition are irrelevant. Sympathy, compassion, concern, and love for my wife is demanded. She needs all of you.
Questions need answering. I don't have the answers.
Wednesday, February 3, 2010
Alphabet diseases - originally written 11/13/07
I have unfortunately learned over the past year about a segment of medicine that I would have rather not. That segment is what I call the alphabet diseases. When you go to the doctor with a complaint or problems you are looking for a diagnosis and then a treatment and/or cure. What you do not want is a diagnosis and a pat on the back. The latter is what seems to happen with the alphabet diseases.
What are the alphabet diseases, you ask? You are aware of some of them such as MS, MD, and ALS. These are terrible diseases in their own right with prognoses that are not good. However, I have learned of others that are as bad and/or worse due to the lack of knowledge and information available. How would you like a disease that when you are seeing medical staff for the first time have to be told what the disease is. Blank stares or mumbles signify a lack of understanding for what the jumble of letters you just threw out mean. Two of these alphabet diseases that I have some personal knowledge of now are MSA (Multilple System Atrophy) and PSP (Progressive Supernuclear Palsy). These are both diseases that have a terrible prognosis and worse than that, no treatment or cures! Not only that, but as I said above they are almost unknown in the medical world as well.
MSA is such a rare and"orphaned" disease that the national support organization had to cancel the plans for the annual meeting due to lack of funds. They have no spokesperson or telethon, like I said they can't even get support for an annual convention. PSP does have a Patricia Richardson (of Tool Time fame) fame as a spokesperson due to her father dying of the disease, but again -ask most medical people what it is and wait for the stammering to begin.
I started this two days ago and have been interupted twice. I have lost my original thoughts and fervor for the subject. Basically it is a warning that you do not want to hear a diagnosis with an alphabet disease in it.
G'Day
What are the alphabet diseases, you ask? You are aware of some of them such as MS, MD, and ALS. These are terrible diseases in their own right with prognoses that are not good. However, I have learned of others that are as bad and/or worse due to the lack of knowledge and information available. How would you like a disease that when you are seeing medical staff for the first time have to be told what the disease is. Blank stares or mumbles signify a lack of understanding for what the jumble of letters you just threw out mean. Two of these alphabet diseases that I have some personal knowledge of now are MSA (Multilple System Atrophy) and PSP (Progressive Supernuclear Palsy). These are both diseases that have a terrible prognosis and worse than that, no treatment or cures! Not only that, but as I said above they are almost unknown in the medical world as well.
MSA is such a rare and"orphaned" disease that the national support organization had to cancel the plans for the annual meeting due to lack of funds. They have no spokesperson or telethon, like I said they can't even get support for an annual convention. PSP does have a Patricia Richardson (of Tool Time fame) fame as a spokesperson due to her father dying of the disease, but again -ask most medical people what it is and wait for the stammering to begin.
I started this two days ago and have been interupted twice. I have lost my original thoughts and fervor for the subject. Basically it is a warning that you do not want to hear a diagnosis with an alphabet disease in it.
G'Day
A new forum - the timeline and setup
I thought I would do this post to keep my other blog http://www.justsomeposts.blogspot.com/ "clean" with my ridiculous thoughts and political/social commentary. This blog will be my thoughts and comments on my and my wife's journey with her disease - multiple system atrophy. If you are not familiar with this disease, don't feel bad. We still have to explain it to doctors, nurses and medical staff most places we go. Google it, you will find good information out there. Here is the official definition from the National Institutes of Health:
Multiple System Atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failurs such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of motor coordination. MSA affects both men and women primarily in their 50s.
There is no cure for MSA. Currently, there are no treatments to delay the progress of neurodegeneration in the brain. But there are treatments to help people cope with some of the more disabling symptoms of MSA.
The disease tends to advance rapidly over the course of 9 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.
Why "Living with a Snow(wo)man" you may ask? I liken this disease to a "melting" of the individual. Trying to hang on to the loved one you knew is akin to trying to keep a snowman (or snowwoman in our case) whole. The disease is insidious. Watching the progress is like watching a snowman melt. Hence the title.
This blog will be mostly for me. I will try to not be too morbid or self-serving, but hey - MY BLOG! If you want to follow along, you are welcomed. If there are things you like or dislike, tell me. If you think I should not be doing it, or hate it; don't read it. Again - MY BLOG. One thing I am NOT looking for is pity or empathy for me. Although this disease is a trial for me and affects every aspect of my life (whether as the elephant in the room, or just the day to day scheduling), the burden on me is nothing compared to the burden on my wife. If you need to offer pity, empathy, sorrow, prayers, or tears; offer them to her. She is facing the disease with a character, bravery, and dignity that I probably could not muster on a bet.
After this opening, the first posts will be "reprints" of the posts I have done on my other blog. Some of them may not be "clean" posts just about the disease. The new posts will be that, but I want a chronicle of where we've been. First a timeline and an update of where we are today.
Sept 2005 - my wife called me at work and told me she had felt ill trying to get in the door of our house. She said she could not get the key to work and felt disoriented and dizzy. I thought she had had a "mini-stroke"(TIA) and told her to take an aspirin, a vitamin E, and to sit down and wait for me. I went home and took her to the ER. After hours of testing, they determined that she may indeed have had an transient ischemic event. We were told to go home and rest. More testing followed. We are not sure what if any relationship this event had in her present state, but we always start our timeline here when we talk to doctors (and there have been a LOT of those!).
My wife for years and years had told me she would get "dizzy" when walking from a parking lot in the daytime into a store or mall. We thought nothing of it, but mentioned it to the doctor when she had her suspected TIA. During the months following her TIA she would get dizzy and light-headed upon standing, especially after sitting a long time. Going from an air conditioned space (a car particularly) to a hot parking lot was especially bad. She then started experiencing syncope (fainting) upon standing or exertion. She started going to doctors. This is all in the early months of 2006. She was still working full time as a registered nurse, driving, cooking, and otherwise leading a fairly normal life. She just passed out from time to time. She went to cardiologists, endocrinologists, and neurologists; as well as her family doctor. After tests and tests and tests, where she was pronounced a "very healthy woman except that you have this syncope going on", we found a doctor that gave her a diagnosis of MSA in early 2007. However I left out the progression of symptoms.
During 2006 her fainting spells progressively got worse. She could tell they were coming on most of the time, but could not do anything to prevent them. She passed out in the parking lot walking into work a few times. They never told her directly, but we heard she was suspected of being an alcoholic or drug addict by many. She suffered from a loss of coordination as well as some vision problems. By June of 2006 she was out of work. She was told that she was too much of a liability. That was a big milestone for her. Losing one's profession is to lose one's self in our society, to a point. She was using a cane to help with her balance by mid to late 2006. I was accompanying her to the doctors now, as her driving was not as good; and our concern that something serious was going on had definitely set in. We went to many, many doctors; none who could offer any answers.
At UNC Hospitals in February of 2007 (my wife says January, but I am writing this and I remember February) Dr. Georgia Lea gave us the official diagnosis of MSA. I had reached that conclusion from studies on the internet and we had discussed it some in general; but unless you have had it happen to you, you cannot imagine getting a diagnosis like that. A death sentence - no cure, no treatment, no hope. That was a rough day. She made phone calls and we met with our kids and told them. A lot of tears were shed that day.
Back to my wife's symptoms. She had developed Parkinson's like tremors during the latter months of 2006 and into 2007. MSA is considered one of the class of diseases sometimes called "Parkinson's Plus" (it's the "plus" that gets you) and this is part of the progression of the disease.
Treatment with Carbidopa/Levadopa started to help with these. She remains on the drug today.
There are also some drugs that can be taken to help with the syncope. The problem with her is if there was a negative side effect from a drug, she seemed to get it. But, through study and experience we became good a mitigating if not stopping the fainting spells. During this time her handwriting became very small and somewhat illegible. This too is a common symptom. Her speech has also suffered with some slurring occurring by this time.
Sometime in early to mid 2007 she went to a walker, or more accurately - a rollator (a walker with wheel instead of skids). She was till moving pretty well, but needed it for balance - which was deteriorating. By December of 2007 she went to using a wheelchair most of the time. By early 2008, the wheelchair was full-time. The symptoms mentioned above were all still around, and more pronounced. Her writing was almost illegible even to her. She would write something down and days later have no idea what it said. During 2008 she was using a powerchair for getting out and about some as well as the wheelchair.
In 2009, the symptoms continued to worsen. Her speech was slurring more and more. Phone conversations, even with those that know her became more difficult. The ability to take steps is waining as her reliance on the chair increases. The tremors are more pronounced and make eating difficult. During this time, she went from needing her food cut up to needing help getting it on to her silverware, to needing help eating.
Today, my wife is in her wheelchair, lift chair, or bed all the time. We do get out some, in fact we did a cruise last October. Her ability to write is pretty much gone. Her ability to eat unaided is pretty much gone. Her ability to hold a conversation on the phone is pretty much gone. Her ability to type is pretty much gone. Her tremors are very pronounced and annoying. Her balance is non-existent. You get the picture.
Now for the good(?). Her ability to laugh is still there. Her ability to make me laugh is still there. We try to have a good laugh every day. I do my best to make her laugh as she does me. Her mind is still there (that can be good and bad, she definitely realizes what she has lost and where she is headed). Her memory is still better than mine on certain things. The love she has for her children, grandchildren, and family is boundless. She is one of the most selfless individuals I have ever known. Her concern for others, especially her family far outweighs her concern for herself. I am reminded every day why I married her. I am reminded every day why this disease is a living hell for both of us.
On with the show. As I said the next posts will be "reprints" of posts I have made on my wife and her disease on my other blog.
Multiple System Atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failurs such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of motor coordination. MSA affects both men and women primarily in their 50s.
There is no cure for MSA. Currently, there are no treatments to delay the progress of neurodegeneration in the brain. But there are treatments to help people cope with some of the more disabling symptoms of MSA.
The disease tends to advance rapidly over the course of 9 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.
Why "Living with a Snow(wo)man" you may ask? I liken this disease to a "melting" of the individual. Trying to hang on to the loved one you knew is akin to trying to keep a snowman (or snowwoman in our case) whole. The disease is insidious. Watching the progress is like watching a snowman melt. Hence the title.
This blog will be mostly for me. I will try to not be too morbid or self-serving, but hey - MY BLOG! If you want to follow along, you are welcomed. If there are things you like or dislike, tell me. If you think I should not be doing it, or hate it; don't read it. Again - MY BLOG. One thing I am NOT looking for is pity or empathy for me. Although this disease is a trial for me and affects every aspect of my life (whether as the elephant in the room, or just the day to day scheduling), the burden on me is nothing compared to the burden on my wife. If you need to offer pity, empathy, sorrow, prayers, or tears; offer them to her. She is facing the disease with a character, bravery, and dignity that I probably could not muster on a bet.
After this opening, the first posts will be "reprints" of the posts I have done on my other blog. Some of them may not be "clean" posts just about the disease. The new posts will be that, but I want a chronicle of where we've been. First a timeline and an update of where we are today.
Sept 2005 - my wife called me at work and told me she had felt ill trying to get in the door of our house. She said she could not get the key to work and felt disoriented and dizzy. I thought she had had a "mini-stroke"(TIA) and told her to take an aspirin, a vitamin E, and to sit down and wait for me. I went home and took her to the ER. After hours of testing, they determined that she may indeed have had an transient ischemic event. We were told to go home and rest. More testing followed. We are not sure what if any relationship this event had in her present state, but we always start our timeline here when we talk to doctors (and there have been a LOT of those!).
My wife for years and years had told me she would get "dizzy" when walking from a parking lot in the daytime into a store or mall. We thought nothing of it, but mentioned it to the doctor when she had her suspected TIA. During the months following her TIA she would get dizzy and light-headed upon standing, especially after sitting a long time. Going from an air conditioned space (a car particularly) to a hot parking lot was especially bad. She then started experiencing syncope (fainting) upon standing or exertion. She started going to doctors. This is all in the early months of 2006. She was still working full time as a registered nurse, driving, cooking, and otherwise leading a fairly normal life. She just passed out from time to time. She went to cardiologists, endocrinologists, and neurologists; as well as her family doctor. After tests and tests and tests, where she was pronounced a "very healthy woman except that you have this syncope going on", we found a doctor that gave her a diagnosis of MSA in early 2007. However I left out the progression of symptoms.
During 2006 her fainting spells progressively got worse. She could tell they were coming on most of the time, but could not do anything to prevent them. She passed out in the parking lot walking into work a few times. They never told her directly, but we heard she was suspected of being an alcoholic or drug addict by many. She suffered from a loss of coordination as well as some vision problems. By June of 2006 she was out of work. She was told that she was too much of a liability. That was a big milestone for her. Losing one's profession is to lose one's self in our society, to a point. She was using a cane to help with her balance by mid to late 2006. I was accompanying her to the doctors now, as her driving was not as good; and our concern that something serious was going on had definitely set in. We went to many, many doctors; none who could offer any answers.
At UNC Hospitals in February of 2007 (my wife says January, but I am writing this and I remember February) Dr. Georgia Lea gave us the official diagnosis of MSA. I had reached that conclusion from studies on the internet and we had discussed it some in general; but unless you have had it happen to you, you cannot imagine getting a diagnosis like that. A death sentence - no cure, no treatment, no hope. That was a rough day. She made phone calls and we met with our kids and told them. A lot of tears were shed that day.
Back to my wife's symptoms. She had developed Parkinson's like tremors during the latter months of 2006 and into 2007. MSA is considered one of the class of diseases sometimes called "Parkinson's Plus" (it's the "plus" that gets you) and this is part of the progression of the disease.
Treatment with Carbidopa/Levadopa started to help with these. She remains on the drug today.
There are also some drugs that can be taken to help with the syncope. The problem with her is if there was a negative side effect from a drug, she seemed to get it. But, through study and experience we became good a mitigating if not stopping the fainting spells. During this time her handwriting became very small and somewhat illegible. This too is a common symptom. Her speech has also suffered with some slurring occurring by this time.
Sometime in early to mid 2007 she went to a walker, or more accurately - a rollator (a walker with wheel instead of skids). She was till moving pretty well, but needed it for balance - which was deteriorating. By December of 2007 she went to using a wheelchair most of the time. By early 2008, the wheelchair was full-time. The symptoms mentioned above were all still around, and more pronounced. Her writing was almost illegible even to her. She would write something down and days later have no idea what it said. During 2008 she was using a powerchair for getting out and about some as well as the wheelchair.
In 2009, the symptoms continued to worsen. Her speech was slurring more and more. Phone conversations, even with those that know her became more difficult. The ability to take steps is waining as her reliance on the chair increases. The tremors are more pronounced and make eating difficult. During this time, she went from needing her food cut up to needing help getting it on to her silverware, to needing help eating.
Today, my wife is in her wheelchair, lift chair, or bed all the time. We do get out some, in fact we did a cruise last October. Her ability to write is pretty much gone. Her ability to eat unaided is pretty much gone. Her ability to hold a conversation on the phone is pretty much gone. Her ability to type is pretty much gone. Her tremors are very pronounced and annoying. Her balance is non-existent. You get the picture.
Now for the good(?). Her ability to laugh is still there. Her ability to make me laugh is still there. We try to have a good laugh every day. I do my best to make her laugh as she does me. Her mind is still there (that can be good and bad, she definitely realizes what she has lost and where she is headed). Her memory is still better than mine on certain things. The love she has for her children, grandchildren, and family is boundless. She is one of the most selfless individuals I have ever known. Her concern for others, especially her family far outweighs her concern for herself. I am reminded every day why I married her. I am reminded every day why this disease is a living hell for both of us.
On with the show. As I said the next posts will be "reprints" of posts I have made on my wife and her disease on my other blog.
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