I have mentioned before that communication for my wife (and those of us trying to communicate with her) is a very, VERY frustrating thing. I am travelling again this week and one of the things I always try to do is call her at least once a day just to "check in". This is so frustrating for her and me. She has trouble holding the phone to her mouth/ear, and that combined with her inability to speak clearly and with volume makes a phonecall a frustrating experience. She actually does not get many phonecalls now from anyone but myself just for that reason. I know she likes to hear from me (and others) so I make a point to call.
It always makes me so sad to hear her, actually to not be able to hear her. I am constantly saying "I did not hear that" or just "what" or "excuse me"; at almost every comment. I end up cutting the call short just because of the frustration level for her and myself. What is the saddest to me however, is when I call her and she does not answer. What I get (or now got, because Verizon changed our voicemail service and her message was erased) is her voice from three or so years ago. It would tear me up to hear her bright, cheerful, clear voice with volume telling me she was not available. As I have commented before, it is amazing how quickly this disease takes away that which those of us that are not afflicted take for granted; like eating, speaking, walking, driving, etc. It always amazed me that her voice could change so much in such a short time.
We always get some form of conversation in, however; and she made my day today when I said "I did not have anything particular to tell you. I just wanted to say hi". Her response was "I am glad you did".
Like I said, we are just searching for the shade.
Tuesday, August 31, 2010
Tuesday, August 10, 2010
Continuing Saga
My job requires some overnight travel. I am lucky to have a boss that is very understanding of our familial condition and my requirement to be at home as much as possible. However, I still have to go away at times. This past weekend was one of these. My wife and I are also lucky to have six children. Our oldest daughter is acting as my wife's primary caregiver currently, when I am at work or away. I am still very mindful of the fact that my wife is more comfortable and secure when I am there, but realize we are very fortunate to have the help we do.
I left last Thursday and returned last evening (Monday). I got a call from my daughter yesterday prior to my leaving to come home. I could tell by the hesitant way she started the conversation, she was not looking forward to saying what she had to say. This has happened a few times before. My mind always starts racing from here to there thinking of the possibilities (which truly are endless) of what she could have happened. She has called to tell me my youngest daughter had wrecked my car, that my wife had this problem or that, or other such news. This occasion was about my wife. It seems she had fallen. It was during a bathroom maneuver. Somehow the wheelchair moved out from under them and my wife and daughter ended up on the floor. So far, not too bad. It also seems that my wife's hand ended up under my daughter - still not too bad.
Now the bad part. The pinkie finger on my wife's hand had curled up and bent in a fashion that caused my daughter to crush the finger. They told me later that in the moment after the fall, while "taking inventory" of what had happened, my wife cried out "my hand!" My daughter realized it was under her and pulled it out. The nail from the pinkie finger remained behind on the floor. The finger was bent in a weird fashion and appeared broken (X-rays later confirmed this). Blood was everywhere due to the torn off fingernail. It apparently was a quite gruesome sight, and as you might imagine - a quite painful one as well. Getting a nail ripped off of a finger and breaking the final joint is not a pleasant experience, I would imagine (I have had a nail ripped off, and a broken hand - but never at the same time).
I came home last night and was shown the hand. It looks like it has been beaten with a hammer. It is very swollen, and extremely black and blue. I did not examine the finger yet, it was dressed and had been bleeding, so we felt it was better to just leave it alone. I will see it this morning when I re-dress it.
My point of this, other than reporting? There is now lots of guilt to go around. My daughter's guilt at not preventing the fall. Her guilt at landing on the finger, etc. Then there is my guilt. If I had been home there would likely not have been a fall. The problem here is one of reality. We all have lives to live. I would love to stay at home and take care of my wife and be with her all the time. Financial obligations do not allow that to even be considered. My daughter's guilt is understandable. However, accidents happen. The goal is to make them as infrequent as possible, and if they do occur - as benign as possible. My wife and I are very lucky to have her to help as she does.
If you are faced with a loved one that has this, or another debilitating disease; you too are (or will be) faced with the question of "do I go to work or do I stay?" Unless your financial circumstances are such that you can live without the income, the answer will be "No". If you are a caregiver, you will always worry about every bump and bruise (as you should). You cannot let fear paralize your actions. In trying to prevent any danger or injury, you are probably opening up the opportunity for more. Life and living are a risk. Pain and suffering are a part of life. This damn disease should be pain and suffering enough for a family for a lifetime.
The saga continues, life goes on - such as it is.
I left last Thursday and returned last evening (Monday). I got a call from my daughter yesterday prior to my leaving to come home. I could tell by the hesitant way she started the conversation, she was not looking forward to saying what she had to say. This has happened a few times before. My mind always starts racing from here to there thinking of the possibilities (which truly are endless) of what she could have happened. She has called to tell me my youngest daughter had wrecked my car, that my wife had this problem or that, or other such news. This occasion was about my wife. It seems she had fallen. It was during a bathroom maneuver. Somehow the wheelchair moved out from under them and my wife and daughter ended up on the floor. So far, not too bad. It also seems that my wife's hand ended up under my daughter - still not too bad.
Now the bad part. The pinkie finger on my wife's hand had curled up and bent in a fashion that caused my daughter to crush the finger. They told me later that in the moment after the fall, while "taking inventory" of what had happened, my wife cried out "my hand!" My daughter realized it was under her and pulled it out. The nail from the pinkie finger remained behind on the floor. The finger was bent in a weird fashion and appeared broken (X-rays later confirmed this). Blood was everywhere due to the torn off fingernail. It apparently was a quite gruesome sight, and as you might imagine - a quite painful one as well. Getting a nail ripped off of a finger and breaking the final joint is not a pleasant experience, I would imagine (I have had a nail ripped off, and a broken hand - but never at the same time).
I came home last night and was shown the hand. It looks like it has been beaten with a hammer. It is very swollen, and extremely black and blue. I did not examine the finger yet, it was dressed and had been bleeding, so we felt it was better to just leave it alone. I will see it this morning when I re-dress it.
My point of this, other than reporting? There is now lots of guilt to go around. My daughter's guilt at not preventing the fall. Her guilt at landing on the finger, etc. Then there is my guilt. If I had been home there would likely not have been a fall. The problem here is one of reality. We all have lives to live. I would love to stay at home and take care of my wife and be with her all the time. Financial obligations do not allow that to even be considered. My daughter's guilt is understandable. However, accidents happen. The goal is to make them as infrequent as possible, and if they do occur - as benign as possible. My wife and I are very lucky to have her to help as she does.
If you are faced with a loved one that has this, or another debilitating disease; you too are (or will be) faced with the question of "do I go to work or do I stay?" Unless your financial circumstances are such that you can live without the income, the answer will be "No". If you are a caregiver, you will always worry about every bump and bruise (as you should). You cannot let fear paralize your actions. In trying to prevent any danger or injury, you are probably opening up the opportunity for more. Life and living are a risk. Pain and suffering are a part of life. This damn disease should be pain and suffering enough for a family for a lifetime.
The saga continues, life goes on - such as it is.
Tuesday, July 6, 2010
Just looking for some shade
I know I have not posted in over six weeks. I mentioned a while back that this was harder than I imagined when I started. In some ways it is probably different than you may imagine. It is not that I have nothing to say. In most cases it is that I have too much to say. But out of commitment to the four people and a frog that read this, I thought I would write something.
The title of this blog was one of those things that came from passion of the moment. My wife was having a particularly bad couple of days and I told her "you are like a snowman - melting right in front of my eyes." Later that month was when I started this blog. Did you ever try to save snow? I have never seen it done. Just the act of touching it, changes it. You can put a container of snow into your freezer and when you go to get it out it is ice. If you don't put it in the freezer, it is water - in a very short time. My wife is a bit different. She is still her. As I have said before, we still joke and laugh - we just have to work a bit harder at it, and we may stop a bit sooner. She is still the wonderful person I fell in love with almost forty years ago. Her physcial self is changing. This damned disease is wreaking havoc on her ability to do most anything. It is like the snowman in the sun. It may be below freezing, but if the sun hits the snowman - it melts a bit. It changes. There is not much you can do about it.
I have mentioned the other "joys" of this disease. MSA is a beast. It not only causes problems on its own; due to the fact it affects the brain it calls in a lot of other "helpers" to add to the challenges. I know I have written about the spinal torticollis (cervical dystonia) that my wife has to deal with. This is a fun disease all on its own. When partnered up with MSA, it is a real joy. We are constantly picking my wifes head up now. She is constantly leaning forward. It makes almost any activity a real challenge.
For over the past month my wife has had to deal with another alphabet disease - TMJ. Temporomandibular joint (TMJ) is actually the name of the jaw joint. However, it had become synonymous with the disorder of the joint that causes pain and discomfort when opening or closing the jaw - chewing for example. This pain has been so bad that she has not eaten solid food for over six weeks, except to experiment to see if it is better (which it has not been). We are slowly becoming experts on the world of liquid nourishment. Bless the Ensure, Boost, protein powder, V8 Splash, Mott's manufacturers. I have also become quite proficient at making a protein shake that can be ingested without gagging.
Again, I compare this disease to the melting of a snowman. The advance of the disease is relentless. The complications are trying. The challenges to everyday living are monumental. What we both would not give for just one day of "normal" - old normal. Like it was five years ago before this disease started dominating our lives. Although the end of that one day would be hell for both of us. In fact, knowing how the day would end would probably make it hell itself.
Oh well, we will just keep looking for shade.
Again I mention - if you or a loved one is dealing with this disease; we would love to hear from you. One of the other characterics of this disease versus most others is you almost never meet anyone else with it. There just are not enough people afflicted (thankfully) to form much of a community. That makes the disease worse in that you are facing it alone and without information or much support. Please contact us by posting here. or emailing me - gumbypoole@aol.com
The title of this blog was one of those things that came from passion of the moment. My wife was having a particularly bad couple of days and I told her "you are like a snowman - melting right in front of my eyes." Later that month was when I started this blog. Did you ever try to save snow? I have never seen it done. Just the act of touching it, changes it. You can put a container of snow into your freezer and when you go to get it out it is ice. If you don't put it in the freezer, it is water - in a very short time. My wife is a bit different. She is still her. As I have said before, we still joke and laugh - we just have to work a bit harder at it, and we may stop a bit sooner. She is still the wonderful person I fell in love with almost forty years ago. Her physcial self is changing. This damned disease is wreaking havoc on her ability to do most anything. It is like the snowman in the sun. It may be below freezing, but if the sun hits the snowman - it melts a bit. It changes. There is not much you can do about it.
I have mentioned the other "joys" of this disease. MSA is a beast. It not only causes problems on its own; due to the fact it affects the brain it calls in a lot of other "helpers" to add to the challenges. I know I have written about the spinal torticollis (cervical dystonia) that my wife has to deal with. This is a fun disease all on its own. When partnered up with MSA, it is a real joy. We are constantly picking my wifes head up now. She is constantly leaning forward. It makes almost any activity a real challenge.
For over the past month my wife has had to deal with another alphabet disease - TMJ. Temporomandibular joint (TMJ) is actually the name of the jaw joint. However, it had become synonymous with the disorder of the joint that causes pain and discomfort when opening or closing the jaw - chewing for example. This pain has been so bad that she has not eaten solid food for over six weeks, except to experiment to see if it is better (which it has not been). We are slowly becoming experts on the world of liquid nourishment. Bless the Ensure, Boost, protein powder, V8 Splash, Mott's manufacturers. I have also become quite proficient at making a protein shake that can be ingested without gagging.
Again, I compare this disease to the melting of a snowman. The advance of the disease is relentless. The complications are trying. The challenges to everyday living are monumental. What we both would not give for just one day of "normal" - old normal. Like it was five years ago before this disease started dominating our lives. Although the end of that one day would be hell for both of us. In fact, knowing how the day would end would probably make it hell itself.
Oh well, we will just keep looking for shade.
Again I mention - if you or a loved one is dealing with this disease; we would love to hear from you. One of the other characterics of this disease versus most others is you almost never meet anyone else with it. There just are not enough people afflicted (thankfully) to form much of a community. That makes the disease worse in that you are facing it alone and without information or much support. Please contact us by posting here. or emailing me - gumbypoole@aol.com
Sunday, May 23, 2010
What did you say?
I know I have not posted for a while. As I said previously, without making this just a daily or weekly report of the disease, I just cannot be motivated to write. Most of the posts prior were "of the moment" type. I am still wrestling with this. Here are some thoughts today however.
Most, if not all of you reading this can turn to someone else in the room and make a comment on it. If you want to send me your thoughts on this post, you can type a comment. When your phone rings, you answer it and have a conversation if it is someone you want to talk to. Now, imagine none of that were possible.
That is where my wife is now. I tell her that her world is slowly getting smaller. It started by her not being able to drive where she wanted. Then it became so she could not walk where she wanted. That restricts her physically. Slowly, her ability to talk is being taken away. I have said "excuse me", "what did you say", or just "huh" 8,468 times in the past month. I know it annoys both of us.
What does it mean when you can't speak? You can't let people know what you are thinking. There are schools of thought that profess speech as one of the defining features of our humanity. She can make known what she needs, and most of her wants; but the act of discussing what she feels or being able to hold a conversation is gone. Like I said, she lives in a little world. People don't call her because they cannot understand her on the phone. People don't talk to her because they cannot understand her responses. When we go to the doctor now, they end up speaking to me because I am usually translating after the first few words anyway.
So, modern technology has given us many other ways of communicating - right? Texting, IMing, email, blogging, etc. That has helped some, and still is a bit. But, try doing any of those things when your tremors are so bad that you cannot hit the keys. It can take her two to three minutes to type a text with one sentence - and then it will be mostly mispelled words. Emails are OK, but for her to answer one can take all evening and would fail a second grade writing class.
I can only experience this through her frustration. I feel so bad for her. I have tried to think of anything that might help, but I am at a loss. I see her world slowly (or actually to damn quickly) closing in around her. Not being able to communicate with family and friends is horrible for her. We continue to do what we can. She continues to do less and less.
Most, if not all of you reading this can turn to someone else in the room and make a comment on it. If you want to send me your thoughts on this post, you can type a comment. When your phone rings, you answer it and have a conversation if it is someone you want to talk to. Now, imagine none of that were possible.
That is where my wife is now. I tell her that her world is slowly getting smaller. It started by her not being able to drive where she wanted. Then it became so she could not walk where she wanted. That restricts her physically. Slowly, her ability to talk is being taken away. I have said "excuse me", "what did you say", or just "huh" 8,468 times in the past month. I know it annoys both of us.
What does it mean when you can't speak? You can't let people know what you are thinking. There are schools of thought that profess speech as one of the defining features of our humanity. She can make known what she needs, and most of her wants; but the act of discussing what she feels or being able to hold a conversation is gone. Like I said, she lives in a little world. People don't call her because they cannot understand her on the phone. People don't talk to her because they cannot understand her responses. When we go to the doctor now, they end up speaking to me because I am usually translating after the first few words anyway.
So, modern technology has given us many other ways of communicating - right? Texting, IMing, email, blogging, etc. That has helped some, and still is a bit. But, try doing any of those things when your tremors are so bad that you cannot hit the keys. It can take her two to three minutes to type a text with one sentence - and then it will be mostly mispelled words. Emails are OK, but for her to answer one can take all evening and would fail a second grade writing class.
I can only experience this through her frustration. I feel so bad for her. I have tried to think of anything that might help, but I am at a loss. I see her world slowly (or actually to damn quickly) closing in around her. Not being able to communicate with family and friends is horrible for her. We continue to do what we can. She continues to do less and less.
Sunday, April 11, 2010
To be, or not... (addtional apologies to the Bard)
One of the things we have come to expect out of medical providers and the field of medicine in this the modern world, is the abiltiy to provide a cure and/or treatment for disease and sickness. I know I have addressed this issue before, but I am at it again as I find the lack of treatment the most frustrating part of my wife's illness from my point of view. The inability to do ANYTHING is unbelievably hard to deal with. Going to a doctor that specializes in parkinsonism and/or MSA is still going to get you an exam, a re-evaluation of medication from a helping with symptoms perspective, and then a pat on the back with a "see you in six months". Knowing that even if she had cancer we could be doing something, is almost too much to bear. (I am in no way making light of cancer. I realize cancer in it's many forms is still one of the largest killers of people. BUT, I am making the point that all but the smallest of percentages of cancer have some chemo, radiation, or surgical procedure that can be done to at least improve the chances of survival and/or cause a remission.)
Dealing with the incessant decline of her ability to do what we all take for granted is frustrating for all of us, especially my wife. We now have to basically feed her with every meal unless it is a simple finger food. Going to the bathroom and all that incompasses is a challenge that grows with every day. Picking up her cup from her chair side for a drink is becoming a challenge for her. We have no relief from the inexorable march of this disease. Just this morning my wife looked up at me with tears in her eyes and said "I don't want to be sick any more". I told her I would give most anything if she was not.
I have commented before that to live with someone that is on death row, so to speak, is a sobering experience. As much as I try, I cannot fathom what she is going through. Yesterday morning I was putting away in her closet some of her winter clothes while she watched. I came out of the closet and she was crying. I went to her and asked why. She sobbed to me "Will I ever wear those again?" I just hugged her. Unless you are faced with something like she is, you would not even think that way.
I know a lot of people out there, maybe even some of the ones that might read this post, have friends, family, or even themselves, that have been saved from a horrible death by modern medicine. I know there are people now that are going through the horrors of chemo andor radiation; or facing an amputation or transplant. However, as horrible as those things are...
Be glad you do not have one of the alphabet diseases where NOTHING can be done.
Dealing with the incessant decline of her ability to do what we all take for granted is frustrating for all of us, especially my wife. We now have to basically feed her with every meal unless it is a simple finger food. Going to the bathroom and all that incompasses is a challenge that grows with every day. Picking up her cup from her chair side for a drink is becoming a challenge for her. We have no relief from the inexorable march of this disease. Just this morning my wife looked up at me with tears in her eyes and said "I don't want to be sick any more". I told her I would give most anything if she was not.
I have commented before that to live with someone that is on death row, so to speak, is a sobering experience. As much as I try, I cannot fathom what she is going through. Yesterday morning I was putting away in her closet some of her winter clothes while she watched. I came out of the closet and she was crying. I went to her and asked why. She sobbed to me "Will I ever wear those again?" I just hugged her. Unless you are faced with something like she is, you would not even think that way.
I know a lot of people out there, maybe even some of the ones that might read this post, have friends, family, or even themselves, that have been saved from a horrible death by modern medicine. I know there are people now that are going through the horrors of chemo andor radiation; or facing an amputation or transplant. However, as horrible as those things are...
Be glad you do not have one of the alphabet diseases where NOTHING can be done.
Sunday, March 21, 2010
Excuse me, are you a rock star? Originally posted April 22,2009
Sorry, I just found this one from the past that I apparently forgot to post when I was "catching up". I was getting ready to post some thoughts on Torticollis, and remembered this.
Spasmodic Torticollis. Great name for a rock band, yes? Cervical Dystonia. Also a good one. Both sound like a lead-in for a heavy metal band with big hair. Well, we have entered the rock band era with my wife's disease. And now, the coliseum is proud to present.......Cervical Dystonia!!!
These two heavy metal names are both monikers of a disease of which my wife now is suffering. As a side effect of her primary illness, we get to sample an entire array of diseases - as symptoms of multiple system atrophy.
Cervical Dystonia is (in layman's terms - I am just now learning about this, over the last few hours) where the muscles of the neck spasm and/or contract on their own. It is annoying and according to my wife (and common sense) very uncomfortable to painful. When she gets tired, excited, or emotional more than a bit, her neck pulls her head towards her chest. This is actually called anterocollis when it happens this way. There are other names for pulling to the side or to the back. I am not sure how common this is, but in her case she cannot pick her head up on her own. I have to push/pull her head to the correct position and hold it there while things calm down.
Ain't life grand! Rock on, dude!!
Spasmodic Torticollis. Great name for a rock band, yes? Cervical Dystonia. Also a good one. Both sound like a lead-in for a heavy metal band with big hair. Well, we have entered the rock band era with my wife's disease. And now, the coliseum is proud to present.......Cervical Dystonia!!!
These two heavy metal names are both monikers of a disease of which my wife now is suffering. As a side effect of her primary illness, we get to sample an entire array of diseases - as symptoms of multiple system atrophy.
Cervical Dystonia is (in layman's terms - I am just now learning about this, over the last few hours) where the muscles of the neck spasm and/or contract on their own. It is annoying and according to my wife (and common sense) very uncomfortable to painful. When she gets tired, excited, or emotional more than a bit, her neck pulls her head towards her chest. This is actually called anterocollis when it happens this way. There are other names for pulling to the side or to the back. I am not sure how common this is, but in her case she cannot pick her head up on her own. I have to push/pull her head to the correct position and hold it there while things calm down.
Ain't life grand! Rock on, dude!!
Thursday, March 4, 2010
What next?
I know I have not posted anything new since the recap of all the existing posts from my original blog. This is turning out to be more difficult than I thought. If you read the previous posts you may have noted a theme - I was typically writing from emotion or passion from the moment. To try to post "informationally" is harder than I imagined when I thought of doing this separate blog. I am still working on how to get motivated to write without it becoming just a medical chart of my wife's disease.
A quick update on that - we continue to battle the daily battles; dressing, eating, using the facilities, etc. All seem to be more difficult as days go by. We have been playing with the medications to try to work on what my wife sees as her most annoying symptom - the tremors. It amazes me how such a small change can in dosage can affect her so much. She is now taking 1 1/2 tablets of 25/100 Sinemet (carbidopa/levadopa) every three hours. We have tried going to two tablets every three hours. That one half of a tablet - 33% more totally sedates her. My daughter (that helps care for her during the day when I am at work) and I both have been amazed at how "drugged" that small increase makes her. We also tried 1 tablet every two hours, but that seems not to work as well. So we stay at 1 1/2.
I will continue to work on trying to formulate a format for this so I can do posts regularly. Like I said, I don't want it to turn into a medical chart; but I also realize I can't wait for a passionate moment to do a post like I did in the past. Any ideas or suggestions are welcomed.
If you know anyone with this disease, or you yourself have been diagnosed with MSA - my wife and I would love to hear from you. Drop me a response and we will get back to you. From what I read there are about 7 people per million that have this evil disease. That means there are not a whole lot of people, but there are enough that communication and fellowship is possible.
A quick update on that - we continue to battle the daily battles; dressing, eating, using the facilities, etc. All seem to be more difficult as days go by. We have been playing with the medications to try to work on what my wife sees as her most annoying symptom - the tremors. It amazes me how such a small change can in dosage can affect her so much. She is now taking 1 1/2 tablets of 25/100 Sinemet (carbidopa/levadopa) every three hours. We have tried going to two tablets every three hours. That one half of a tablet - 33% more totally sedates her. My daughter (that helps care for her during the day when I am at work) and I both have been amazed at how "drugged" that small increase makes her. We also tried 1 tablet every two hours, but that seems not to work as well. So we stay at 1 1/2.
I will continue to work on trying to formulate a format for this so I can do posts regularly. Like I said, I don't want it to turn into a medical chart; but I also realize I can't wait for a passionate moment to do a post like I did in the past. Any ideas or suggestions are welcomed.
If you know anyone with this disease, or you yourself have been diagnosed with MSA - my wife and I would love to hear from you. Drop me a response and we will get back to you. From what I read there are about 7 people per million that have this evil disease. That means there are not a whole lot of people, but there are enough that communication and fellowship is possible.
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