Our Grandsons are staying with us this week. We both love having them here. They are truly exceptional young men. Of course, they are aware of my disease and the issues it causes. Yet, they have not really been exposed to the effects of this disease. They see me in the day tie, for a short period of time, when I am doing well. But, as they learned last evening, nights are different.
I have addressed the "Sun Downer" issues before but they have become more dramatic in the last few months. As I have also shared before, routine is very important to my mental well being.
I started this blog last Monday, I think. Since then, I have been through the busiest and stressful week I have had in a very long time. The Grandsons staying with us all week has been great. I enjoy their company. However, having two teenagers in the house at the same time is something I never experienced before. Keeping up with them is a mental, emotional, and physical drain. Don't get me wrong, they did nothing wrong. They are just teenagers!
The other thing is my routine has been blown out the window!! No naps, everyday busy, no down time, up late, up early, wow, I am beat. No, I will be glad to have my routine back.
Friday, May 17, 2013
Thursday, May 9, 2013
Memory issues
As my LBD journey progresses, I have noticed a number of symptoms increasing. One of them is my memory. There are times that my mind is completely blank. I have no thought on my mind at all. Other times, I am focused on the past events of my life. I still have very realistic dreams that run over into my waking hours. Some of them have me believing that I am still working and have not retired from Civil Service. In these dreams, I have been notified that I have been approved to retire, but I just can't seem to retire. I have too much to do!
Every night, when I lay down, I try to remember what I did during the day. Most of the time, I don't remember the events of the day. I can't remember if we went anywhere, of what we had to eat. I don't remember names of people I meet now and I have problems remembering the names of the people I knew in the past. Shipmates, folks I worked with, even family members. This frustrates me and I often ask my wife the name of this person or that.
Of all the things I have lost, I miss my memory the most! It's true! It's bad enough I live some of my day in a dream world, but to forget the names of people I have known for years, old friends and shipmates, is difficult to deal with.
People with Dementia put on a "Show" to cover up their memory problems. We pretend to know someone or pretend we remember a situation or event. We smile, say "Yes" and agree with you. But we really don't know what you are talking about! It's the truth. I watched my Father in Law do this when he had Alzheimer's and I do it now. I never though I would be in this condition.
So, as this "Long Good By", as President Reagan called it, continues, I have become more and more frustrated with my memory loss. It is the most difficult effect of LBD for me.
Every night, when I lay down, I try to remember what I did during the day. Most of the time, I don't remember the events of the day. I can't remember if we went anywhere, of what we had to eat. I don't remember names of people I meet now and I have problems remembering the names of the people I knew in the past. Shipmates, folks I worked with, even family members. This frustrates me and I often ask my wife the name of this person or that.
Of all the things I have lost, I miss my memory the most! It's true! It's bad enough I live some of my day in a dream world, but to forget the names of people I have known for years, old friends and shipmates, is difficult to deal with.
People with Dementia put on a "Show" to cover up their memory problems. We pretend to know someone or pretend we remember a situation or event. We smile, say "Yes" and agree with you. But we really don't know what you are talking about! It's the truth. I watched my Father in Law do this when he had Alzheimer's and I do it now. I never though I would be in this condition.
So, as this "Long Good By", as President Reagan called it, continues, I have become more and more frustrated with my memory loss. It is the most difficult effect of LBD for me.
Wednesday, May 8, 2013
Physical capabilities are effected by LBD
I have noticed that I have lost strength and stamina. I have written recently about difficulties getting off the sofa. But I had noticed problems even before that with stamina and strength. For instance, my wife and I used to walk for hours covering miles. Now, I get very tired after a 20 or 30 minute walk.
My thought is that this is from the LBD. All of the data I can find backs that up. But I also wonder if my stamina and strength issues are from not wanting to walk or do much else. I know inactivity causes muscle loss and lack of exercise will cause loss of stamina. So, I intent to increase my physical activity. Yes, I will start slow at first and I know I will never get back to where I was before LBD. But, I still think I can be better than I am now.
The journey for someone with LBD is somewhat uncharted. I find very little feedback from others with this disease even though the LBD Association say this is a very prominent disease. But there seems to be very little first hand information from the patients. That is one of the reasons I write this Blog.
I will keep you postted on my progress.
My thought is that this is from the LBD. All of the data I can find backs that up. But I also wonder if my stamina and strength issues are from not wanting to walk or do much else. I know inactivity causes muscle loss and lack of exercise will cause loss of stamina. So, I intent to increase my physical activity. Yes, I will start slow at first and I know I will never get back to where I was before LBD. But, I still think I can be better than I am now.
The journey for someone with LBD is somewhat uncharted. I find very little feedback from others with this disease even though the LBD Association say this is a very prominent disease. But there seems to be very little first hand information from the patients. That is one of the reasons I write this Blog.
I will keep you postted on my progress.
Saturday, May 4, 2013
My first assisted lift chair
Today, we went looking for new living room furniture. I know, I change couches like most people change socks. Well, you could say the same thing about my automobile trades! But this was different. I can no longer get out of our couch easily. It sets low and tilted back, so I have to slide to the edge and then get up. On bad days, I need help. So, we purchased one of those lift chairs. It reclines, it vibrates, it heats, and it lifts me up when I need it.
Then, we found a chair that is equally comfortable for my wife. It has power recline with infinite positioning and a power lumbar support! She cannot wait until it is delivered. She is excited as I am!
My chair is a concession to my condition. A tool to help me do as much as I can. That still is my goal, to be as active as I possibly can as long as I can. Canes, Walkers, Lift Chairs, Power Chairs, anything to keep moving and doing! That's why I take the fist full of prescription drugs that I do and that is why I will continue to be tough.
Then, we found a chair that is equally comfortable for my wife. It has power recline with infinite positioning and a power lumbar support! She cannot wait until it is delivered. She is excited as I am!
My chair is a concession to my condition. A tool to help me do as much as I can. That still is my goal, to be as active as I possibly can as long as I can. Canes, Walkers, Lift Chairs, Power Chairs, anything to keep moving and doing! That's why I take the fist full of prescription drugs that I do and that is why I will continue to be tough.
Wednesday, May 1, 2013
Asthma attack!
This morning, I was enjoying my typical toast and coffee when I aspirated some toast. The choking and coughing brought on a serious Asthma attack. How serious? No air in! I could not take a breath because my lungs were blocked by the tubes being in spasm. I have not had an Asthma attack since I had Bronchitis last winter and ended up in the Emergency Room. Luckily, my inhaler was close and a few shots of Albuteral and I was breathing again.
I bring this up because aspiration is the number one cause of death in LBD patients according to the LBD Association WEB site. It is something I am aware of but I eat so fast, from habit, that I often aspirate and choke. This is the first time that choking has lead to an asthma attack. I will have to alter my eating habits. But that will be hard. The first ship I was on in the Navy had a Mess Decks that seated 45 men, The Enlisted Crew was 350 and we had 45 minutes for any meal! You learned to eat fast!
So, that is the latest problem related to the progression of my Lewy Body Dementia. If you have LBD or are a caregiver for a LBD patient, be on the lookout for this problem.
I bring this up because aspiration is the number one cause of death in LBD patients according to the LBD Association WEB site. It is something I am aware of but I eat so fast, from habit, that I often aspirate and choke. This is the first time that choking has lead to an asthma attack. I will have to alter my eating habits. But that will be hard. The first ship I was on in the Navy had a Mess Decks that seated 45 men, The Enlisted Crew was 350 and we had 45 minutes for any meal! You learned to eat fast!
So, that is the latest problem related to the progression of my Lewy Body Dementia. If you have LBD or are a caregiver for a LBD patient, be on the lookout for this problem.
Tuesday, April 30, 2013
Did you ever wonder why more mature folks talk about their meds?
When I was young, I always wondered why when older folks got together, the topic ALWAYS turned to their ailments, medicines, and Doctor's visits. Now I know! It is because their pain, they disease, their schedule of medicines, is always with them, in the forefront of their lives.
In my case, my LBD rules my life. I am now in constant pain from the Parkinson's portion of my disease. My short term memory is "Shot" according to my Neurologist and that is a direct quote. Seems funny to me that someone with 8 years or more of college and 20 plus years of medical practice could not come up with a better term than "Shot"! But the point is, I am always dealing with the effects of LBD.
When I was younger, the Navy, women, cars, beer, NASCAR, the next liberty port, were the first thoughts in my mind. Then, I did not take 23 prescription drug pills a day. Then I could take over the counter cold remedies, now I can't. I used to remember when I took that over the counter cold remedy, now I can't remember when I took my medicines. I used to remember my wife's name, now, sometimes I forget it. Then my legs only hurt when I worked out too much, now, they hurt all the time. Get the idea, LBD has taken over my life!
Another interesting revelation, those of us with a long term or degenerative disease want to connect with others who suffer from the same issues. Why, good question. It is my theory that we want to learn more about our condition from someone suffering the same issues. Additionally, we want to learn what is next from those who are further into the journey than us. And finally, we want to feel normal. And since our new normal is the disease, we want to connect with fellow sufferers. If I tell my Grandsons what I am feeling, they are concerned but not empathetic. They have no point of reference. Even my wife cannot fully appreciate how I feel. Just like I have no idea ow difficult or painful child birth is. Now you are starting to get it!
So, don't get angry wit us if we are excited to find someone taking the same meds. And don't roll your eyes when we break out our pill charts to compare. Lastly, remember that we are always on the lookout for someone, just like us, to commiserate with. That connection make us feel normal.
In my case, my LBD rules my life. I am now in constant pain from the Parkinson's portion of my disease. My short term memory is "Shot" according to my Neurologist and that is a direct quote. Seems funny to me that someone with 8 years or more of college and 20 plus years of medical practice could not come up with a better term than "Shot"! But the point is, I am always dealing with the effects of LBD.
When I was younger, the Navy, women, cars, beer, NASCAR, the next liberty port, were the first thoughts in my mind. Then, I did not take 23 prescription drug pills a day. Then I could take over the counter cold remedies, now I can't. I used to remember when I took that over the counter cold remedy, now I can't remember when I took my medicines. I used to remember my wife's name, now, sometimes I forget it. Then my legs only hurt when I worked out too much, now, they hurt all the time. Get the idea, LBD has taken over my life!
Another interesting revelation, those of us with a long term or degenerative disease want to connect with others who suffer from the same issues. Why, good question. It is my theory that we want to learn more about our condition from someone suffering the same issues. Additionally, we want to learn what is next from those who are further into the journey than us. And finally, we want to feel normal. And since our new normal is the disease, we want to connect with fellow sufferers. If I tell my Grandsons what I am feeling, they are concerned but not empathetic. They have no point of reference. Even my wife cannot fully appreciate how I feel. Just like I have no idea ow difficult or painful child birth is. Now you are starting to get it!
So, don't get angry wit us if we are excited to find someone taking the same meds. And don't roll your eyes when we break out our pill charts to compare. Lastly, remember that we are always on the lookout for someone, just like us, to commiserate with. That connection make us feel normal.
Sunday, April 28, 2013
The ups and downs of LBD
Lewy Body Dementia is known for it's on again, off again, characteristics. One day or one hour you feel fine. Your mind is working well, you are conversing with people, doing something physical, what ever is normal, and then, the next thing you know, you forget who you are talking too, forget how to read, different words come out of your mouth, and you can't control your muscles! This is, Lewy Body Dementia.
I once was a tough guy, afraid of nothing, self assured, confident. Now, I am different.
My wife and I lead a Bible Study at a local Retirement Community. We have about ten seniors that love GOD's word and are eager to study His Word. I truly enjoy this Ministry opportunity but it is taxing for me. Last Thursday, I was reading the Bible verse we were to study when, out of the blue, I could not read! This is not a new symptom, but it is getting more frequent. The problem passed and I recovered. My Wife noticed my problem and was concerned. After the study, we discussed this latest issue and came to an agreement as to how we will deal with it in the future. It will happen again. The folks in the Bible study do not know of my disease and I do not want to burden them with my issues. I am there to uplift them, not give them something to worry about.
Even in my weakness, I am a tough guy!
I once was a tough guy, afraid of nothing, self assured, confident. Now, I am different.
My wife and I lead a Bible Study at a local Retirement Community. We have about ten seniors that love GOD's word and are eager to study His Word. I truly enjoy this Ministry opportunity but it is taxing for me. Last Thursday, I was reading the Bible verse we were to study when, out of the blue, I could not read! This is not a new symptom, but it is getting more frequent. The problem passed and I recovered. My Wife noticed my problem and was concerned. After the study, we discussed this latest issue and came to an agreement as to how we will deal with it in the future. It will happen again. The folks in the Bible study do not know of my disease and I do not want to burden them with my issues. I am there to uplift them, not give them something to worry about.
Even in my weakness, I am a tough guy!
Subscribe to:
Posts (Atom)