Posts Tagged ‘The Trilogy 100’

Today I want to share with everyone my Myers – Briggs Type indicator MBTI.  I believe it’s usually a pretty accurate description of how a person thinks and why they act the way they do. I know some people see the test as faulty and I’m sure it’s not perfect, but not far from it in my opinion, at least not with my results. If they score mostly in the middle it can seem off or like it could go either way for them, and they’re probably right. In my testing, the results are always strong in every type. My profile describes me perfectly, and I’ve tested several times over the years and always get the same results. I guess that explains why I believe the test is so accurate.

This is the most popular personality assessment test and is used all over the world. Employers often use this test to choose who they hire for certain positions. I think that is risky and if the test is used it shouldn’t be the deciding factor in the choice of who is hired. Even if the test results are what they’re looking for, it doesn’t measure competence and obviously that’s an important factor. For example I love watching Stephen hawking, Into the Universe. It’s fascinating but by the end I realize just how much I don’t understand of what I just watched. He’s reported to be an INTJ and I have no problem saying I’m not competent enough to come close to achieving his success no matter how young I started or how dedicated I was to it. Then again, if I was truly dedicated, maybe I could have. It can be helpful but not necessarily proof that a person will or will not succeed in any given position. We humans are known to be very adaptable, especially out of necessity. If you’re a person trying to figure out what career you are best suited for, I think the test can be helpful to you.

That for the most part sums up my opinion of the test.

My Myers-Briggs personality type is – drum roll…….. INTJ and this is what that says about me:

The Scientist

As an INTJ, your primary mode of living is focused internally, where you take things in primarily via your intuition. Your secondary mode is external, where you deal with things rationally and logically.

INTJs live in the world of ideas and strategic planning. They value intelligence, knowledge, and competence, and typically have high standards in these regards, which they continuously strive to fulfill. To a somewhat lesser extent, they have similar expectations of others.

With Introverted Intuition dominating their personality, INTJs focus their energy on observing the world, and generating ideas and possibilities. Their mind constantly gathers information and makes associations about it. They are tremendously insightful and usually are very quick to understand new ideas. However, their primary interest is not understanding a concept, but rather applying that concept in a useful way. Unlike the INTP, they do not follow an idea as far as they possibly can, seeking only to understand it fully. INTJs are driven to come to conclusions about ideas. Their need for closure and organization usually requires that they take some action.

INTJ’s tremendous value and need for systems and organization, combined with their natural insightfulness, makes them excellent scientists. An INTJ scientist gives a gift to society by putting their ideas into a useful form for others to follow. It is not easy for the INTJ to express their internal images, insights, and abstractions. The internal form of the INTJ’s thoughts and concepts is highly individualized, and is not readily translatable into a form that others will understand. However, the INTJ is driven to translate their ideas into a plan or system that is usually readily explainable, rather than to do a direct translation of their thoughts. They usually don’t see the value of a direct transaction, and will also have difficulty expressing their ideas, which are non-linear. However, their extreme respect of knowledge and intelligence will motivate them to explain themselves to another person who they feel is deserving of the effort.

INTJs are natural leaders, although they usually choose to remain in the background until they see a real need to take over the lead. When they are in leadership roles, they are quite effective, because they are able to objectively see the reality of a situation, and are adaptable enough to change things which aren’t working well. They are the supreme strategists – always scanning available ideas and concepts and weighing them against their current strategy, to plan for every conceivable contingency.

INTJs spend a lot of time inside their own minds, and may have little interest in the other people’s thoughts or feelings. Unless their Feeling side is developed, they may have problems giving other people the level of intimacy that is needed. Unless their Sensing side is developed, they may have a tendency to ignore details which are necessary for implementing their ideas.

The INTJ’s interest in dealing with the world is to make decisions, express judgments, and put everything that they encounter into an understandable and rational system. Consequently, they are quick to express judgments. Often they have very evolved intuitions, and are convinced that they are right about things. Unless they complement their intuitive understanding with a well-developed ability to express their insights, they may find themselves frequently misunderstood. In these cases, INTJs tend to blame misunderstandings on the limitations of the other party, rather than on their own difficulty in expressing themselves. This tendency may cause the INTJ to dismiss others input too quickly, and to become generally arrogant and elitist.

INTJs are ambitious, self-confident, deliberate, long-range thinkers. Many INTJs end up in engineering or scientific pursuits, although some find enough challenge within the business world in areas which involve organizing and strategic planning. They dislike messiness and inefficiency, and anything that is muddled or unclear. They value clarity and efficiency, and will put enormous amounts of energy and time into consolidating their insights into structured patterns.

Other people may have a difficult time understanding an INTJ. They may see them as aloof and reserved. Indeed, the INTJ is not overly demonstrative of their affections, and is likely to not give as much praise or positive support as others may need or desire. That doesn’t mean that he or she doesn’t truly have affection or regard for others, they simply do not typically feel the need to express it. Others may falsely perceive the INTJ as being rigid and set in their ways. Nothing could be further from the truth, because the INTJ is committed to always finding the objective best strategy to implement their ideas. The INTJ is usually quite open to hearing an alternative way of doing something.

When under a great deal of stress, the INTJ may become obsessed with mindless repetitive, Sensate activities, such as over-drinking. They may also tend to become absorbed with minutia and details that they would not normally consider important to their overall goal.

INTJs need to remember to express themselves sufficiently, so as to avoid difficulties with people misunderstandings. In the absence of properly developing their communication abilities, they may become abrupt and short with people, and isolationists.

INTJs have a tremendous amount of ability to accomplish great things. They have insight into the Big Picture, and are driven to synthesize their concepts into solid plans of action. Their reasoning skills gives them the means to accomplish that. INTJs are most always highly competent people, and will not have a problem meeting their career or education goals. They have the capability to make great strides in these arenas. On a personal level, the INTJ who practices tolerances and puts effort into effectively communicating their insights to others has everything in his or her power to lead a rich and rewarding life.

This is a pretty fair assessment of how I am although some things make me cringe a little. I am often misunderstood. It’s true I do have deep feelings toward others, but I tend to assume people know that and I forget people need to have that expressed more often. I’ve been working on that for a while. Small talk is not my thing. I don’t like to talk about future ideas unless I can go ahead and start working on it now.

There is a great benefit and a big downside to having this personality type while dealing with ALS. The great thing is that I can easily stay in my thoughts. I don’t have a strong desire to be the life of the party or to be around people often. As long as I can still plan and communicate my thoughts and be productive, I won’t be near as miserable as the person who needs to be with people often. It has already proven helpful being practically holed up in my room because of the stairs. I spend a lot of time alone, but I’ve also kept myself busy, for one with this blog and other projects I have going.

The big downside is not being able to act on things that I believe need to be done a certain way. This is already manifesting itself with my husband taking over things I’ve always done. I tend to believe I’m doing things the best and most efficient way. After all I’ve put a lot of thought into it before mastering it. It’s not easy for me to let go and watch it being done differently. I think this is really going to be a frustration for me when I have to rely much more often on paid caretakers, especially if I have different ones often. I won’t be able to speak to let them know how I prefer things and if I make a list that seems unnecessary, they will conclude I’m just being a difficult patient and will dread caring for me. I’ve heard this scenario described in a support group I attend. It scares me because I know how helpless I’ll be, and to a person who didn’t choose the right profession it could lead to frustration on their part and even abuse. I’m trying to think ahead about later care to avoid these situations.

Here is a free adapted version of the full test. Try it if just for fun and share your results if you like.

http://www.humanmetrics.com/cgi-win/JTypes2.asp

I’m not sure what my next post will be. I’ll just have to see how I’m feeling or if something new has come up I want to share with you.

Please visit my website: http://thealsexpress.com

Until next time, take care,

April

Today didn’t go as planned. It’s been an ALS day. It is Saturday, the day Mom and I do something. We had planned to go see, The Great Gatsby, this afternoon but I had to cancel. I had a rough night all night. I puked in my sleep. Not a lot, but it  woke me right up. No matter how many times I brush my teeth or rinse my mouth, I have that putrid taste and my tongue is burning. I don’t know how much of that was from ALS but I believe it would have been handled better and I’d be feeling fine now if not for ALS.

Mom usually still comes over to visit on bad Saturdays, but I just felt the need to sleep, even though I couldn’t, so Tony called her. Mom and I will make up for it, she may visit tomorrow, or who knows, I may be up to leaving.

Today I was so sore I couldn’t speak to Tony much. He stayed in his office with the baby monitor, coming right away with the quietest call from me, until he gave in and is now taking a nap beside me. I know this exhausted him too.

I’m so exhausted and I’m freezing in a room that’s not cold. My temp is fine. My muscles ache, especially in shoulders, my legs are mostly twitchy and crampy.

I feel so weak that I don’t argue when Tony pushes me to the sink or bathroom. I’m too weak and just drained. It’s hard to explain. I started to compare it to the flu but it’s very different. I’m weak with twitching and cramping muscles. Today isn’t one of those days when I feel like I can just get up and run downstairs, Today I know my limitations. Limitations caused by ALS.

It’s getting better now but in the night and first half of the day it hurt to breathe in very deep. Mainly in my mid to upper back that wraps around the sides. I hate that feeling, I’m scared my diaphragm or intercostal muscles are cramped and causing the pain of not being able to breathe deep. Having my ventilator on intermittently has helped and the stiff/cramp feeling in that area is gone. It fits the course though. I’ve been feeling more and more twitching in that area for a while. Lately I’ve been having more and more cramping, going by other muscle patterns, something is being killed. Hopefully some other back and side muscles. I hate you, ALS!

I’ll end with saying this has been an ALS day. ALS wins today in two main feelings – anger and fear. ALS won today, but there are many days ahead. ALS is a daily battle, but you know how the war ends. How it has ended for so many before me. If I keep on, this will turn into a bitchy, whiny ALS cursing mess. Frankly I don’t feel well, and I don’t want to give ALS the honor.

I do what I can and still wish for a true treatment or cure. As I move forward I take ALS day by day. Minute by minute.

Please visit my website: http://thealsexpress.com

Until next time, take care,

April

I’ve had the Trilogy 100 for about 3 months now. I wouldn’t want anything else. Now I can’t say I did my research and made the decision after lots of comparisons like with my power wheelchair. This is because I’m at a great

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ALS clinic where they stay on top of all patients and take action at the right time. It was my January 2012 ALS clinic day at Emory. When the Respiratory Therapists came to my room for the usual Forced Vital Capacity (FVC) testing that you get at every visit. I told them what I had been experiencing. I was having headaches, especially when I woke in the morning. I also woke about every morning with a feeling of needing to take a deep breath. I would sit up straight as possible with my fists against the mattress and breathe in as hard as I could. For about the last 3 seconds of the breath I would feel a crackling, then it wouldn’t do it for the rest of the day. It made no noise and my husband tried to feel the vibration I was explaining and never could. It wasn’t a crackling like phlegm per

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say, like you might have with acute bronchitis. After I had that first deep breath for the day, no more crackles. Tony called Dr. Glass’ nurse and he recommended I see my primary doctor and get a chest x-ray to be sure there was no infection. It came back perfectly clear and nobody thought much when I explained my crackles. Right about the same time I was also beginning to notice a feeling of being out of breath with less exertion than usual. The distance of walking became shorter before I would need to catch my breath, and also during conversations it started becoming sooner that I would sound a little breathy and need to stop for a minute or talk even lower.

These weren’t serious, “Help, I can’t breathe situations,” but when you have ALS you notice these things, and in a different light. You’re very aware that losing the ability to breath and subsequent cases of pneumonia is usually what kills you. I pay close attention to my body while trying not to over think things. It’s not always easy with this scary disease. I gave thought to possibly anxiety being the culprit, but I knew it wasn’t causing the crackling lungs at the end of my first breath of the day, and it became very apparent I needed to take breaks sooner than usual from any exertion, or much talking. Others noticed too.

I told the Respiratory Therapists it wasn’t real bad, but they thought it needed to be looked at closer. They chose to go ahead with some extra testing. They felt it should be done and they believed Dr. Glass would feel the same, so they started with it. The main difference was in my breathing tests while lying down. This explained the morning headaches and even the first breath crackle that had only brought strange looks before when trying to explain to others. They explained that while lying down and sleeping, I most likely was breathing shallow and the lower portion of my lungs were collapsing. They explained my first crackling breathe is when my lungs were opening back up for the day while I breathed deeper. The headaches were likely because during sleep, breathing muscles relax more than when awake and if not breathing in, and especially out correctly a buildup of Carbon dioxide (Co2) will cause headaches. In end stages this can be a cause of death because of carbon dioxide buildup in the blood. Severe Co2 poisoning will result in irregular heartbeat, unconsciousness and death. Respiratory issues are taken very serious in ALS. That’s one discipline you will see at every clinic visit.

When I had my FVC tested sitting for the first time at Emory, the day Dr. Glass confirmed my ALS diagnosis, I tested great. You get three chances to blow out and three to suck in air and they take the highest numbers for each. My first was 101. I thought it would be a long time before any decline. The next visit I think was in the 90s, then a couple 80’s started showing up but I still made a low 90s result. My visit in January was a little shocking when I saw that first result in the 70s. I’m not positive, but I think I made it to mid 80s with my last of three. The real shocker came when I was tested lying down. You can’t lift your head for this and I ended in the low 60s. That not only shocked, but scared me a little. I’ve read of people being in the 30s, 20, and even teens though. I know the lower your FVC score is the more likely you are to be turned down for certain clinical trials and there is a window of opportunity before it gets too low to have a feeding tube placed also.

My trilogy 100 has changed how I feel so much. I do still get really fatigued, but it’s different. I know you can’t regain muscle lost from ALS, but you can slow the loss down and I believe this has been the case with me. I’m feeling good about my FVC scores being tested in a few days when I go for my Validation of bio-marker study. I no longer wake with a headache every morning, and I don’t have the crackles at the end of my first breathe in, and the settings on my Trilogy 100 are still set relatively low.

That’s how I ended up with the Trilogy 100. Now I’ll tell you a little about this amazing device. First of all it is capable of providing invasive and non-invasive therapy. So, if you start off using this device and progress to the point of needing and choosing to have a tracheostomy, you can still use this instead of getting used to a completely different device. It also only weighs in at 11 lbs, so it’s very portable. It fits nicely on the back of a power wheelchair. It includes six hours of battery life, so in the event you’re out and about that’s a long time. You can also purchase extra batteries. It’s very easy for your doctor to keep up with how it’s working for you. It has a simple SD card that your Respiratory Therapist comes to take and replace every couple of months, or whatever is determined necessary for your case. You hit one button to turn it on and two to turn it off. You can’t mess up. It’s capable of several modes of therapy depending on patient needs, but can be left with only two settings for the patient. Without trying to talk over my head mine is with AVAPS setting and BIPAP setting. BIPAP is what is commonly prescribed for ALS patients. Most people are familiar with CPAP – Continuous Positive Air Pressure. Then there is BIPAP – Bi-level Positive Air Pressure. BIPAP allows you to breathe out easier by easing the air pressure when exhaling.

I’m not comfortable explaining what AVAPS setting means except it is: Average Volume Assured Pressure Support. You can learn more by clicking this link.  I can tell you I prefer it much over the BIPAP setting. It senses what I’m going to do and what I need like magic. On the BIPAP there is more of a struggle to get my breath in sync. This has been my experience, and this is the main reason I’m so thankful I wasn’t prescribed a standard BIPAP. This may be different for another person. Since I don’t like the BIPAP setting, I’ll be asking for a prescription for the sip and puff mode. This is a great feature that allows you take a helpful breathe as needed through a harder plastic connection, best way to explain is you take a sip of air as needed. It won’t constantly blow air in this mode. I’m looking forward to replacing the BIPAP with this setting.

I have and recommend a humidifier. Dry air will dry out your sinuses and can be uncomfortable. I had to wait about a month on the humidifier and it made a big difference in comfort. The most dreadful thing, no matter the type of device is finding the right mask for your face. I’ve tried very hard to find and like a full face mask that works well for me with no luck. Its awkward head-gear and the plastic pushing on the forehead begins to really hurt after a couple of hours no matter how soft and I haven’t found one that doesn’t start leaking within two hours either.

My favorite around the house mask is the F&P Pillairo. The nasal pillows are very comfortable and create a great seal. It’s a one size fits all non adjustable band that goes around the head. I thought that would be a problem but I just put it behind my ears and it works like a charm. If I’m in my bed I can just let it hang from my neck between uses. It’s not very pretty though. My next favorite is ResMed Swift FX for her. The nose pillows aren’t as comfortable, going out it’s worth it to me because it covers your face the least. I also have a ResMed SoftEdge Mirage FX. This completely covers the nose. It’s not nasal pillows. I use this occasionally at night. It creates and keeps a good seal and is comfortable. The only reason I don’t use it more often is laziness really. It does involve more time getting it on. When using it I have to also wear a chin strap so that my mouth won’t open in my sleep. At first I didn’t like that because the strap makes my teeth touch in an uncomfortable way. I figured a way to solve this by buying an inexpensive mouth guard you can find at any drug store. You heat it and let it mold to your teeth. It’s a great way to get the same benefits of a full face mask at night with better comfort. I only use this on nights I feel like taking the extra time, which isn’t much, but it is compared to the slip on nasal masks. I’m sure I’ll be trying many more masks, especially as I need the air for longer periods of time.

This has turned into a much longer post than I planned for so I’m going to stop here. I hope this is helpful to someone.

Please visit my website: http://thealsexpress.com

Until next time, take care,

April