In one of my first posts I identified the “Big 5” physical challenges of MND/ALS…
Ablutions – bathing and toileting
Transportation – including walking, driving, etc.
Consumption – eating and drinking
Communication – oral and written, verbal and non-verbal
Recreation – everything from sport to channel-surfing
Each of these areas contains their own challenges and milestones as the disease progresses.
In this post I want to elaborate on the drinking aspect of ‘Consumption.’
Drinking fluids has become more and more difficult for me for a number of reasons. I can no longer drink normally from a glass, but I can drink through a straw with someone holding the glass for me. Also, I need to hold my head at a certain angle when I drink. However, because the muscles in my neck have weakened considerably, I now also need someone to hold my head at the correct angle while I drink. So it now takes 3 people (me plus 2 others) for me to drink a glass of liquid. At first glance it must look more like I’m being attacked than helped!
Even with all this help, I still have to concentrate on what I’m doing in order to avoid choking on what I’m drinking. I can’t drink plain water anymore because it’s too thin, so I either have something mixed with the water or have something thicker like fruit juice. I’ve tried thickening agents in water, but what they call ‘tasteless’ still tastes pretty awful to me!
As a result of all these factors, it usually takes me about 10 minutes to finish a small glass of fluid. In spite of this, I try to finish at least 5 glasses of fluid per day to keep myself hydrated. Otherwise, I feel even weaker, my eyes become quite dry and my saliva becomes thick and plentiful.
And by the way, when you combine an increase in saliva production (due to slight dehydration) with weakness in the muscles of the lips and tongue, you get one of the most irritating consequences of this disease: drool. Yes, it’s a bit gross, but it’s a reality I’ve had to get used to. Initially it bothered me a lot, but then I recalled something that helped me put it in perspective. I remembered seeing a motto printed on the bib of some friends’ baby. In large, bold letters it read, “SPIT HAPPENS!”
Probably the most frustrating thing I am dealing with currently is the further deterioration of my voice. When I last discussed my ability to communicate back in September of 2008, I wrote, “At the moment I can still communicate with my voice, but it requires a lot of effort and at times it is hard for people to understand me. My voice is quite soft and gets tired quickly. And if there is much background noise, it is very difficult for me to be heard…. I really don’t mind repeating myself. Most of the time I’m able to get my message across eventually!”
Since then my voice has decreased in both volume and clarity to the point that most people are unable to understand anything I say. Even those closest to me, Nicky and my two caregivers, often struggle to understand me. The reason for this is three-fold: First, my diaphragm is no longer able to force air strongly over my vocal chords. Second, the muscles that control my vocal chords have weakened to the point that it takes more air to make them vibrate. And third, my tongue and lips are also not as cooperative as they used to be!
Sometimes I have to resort to spelling words that are difficult for me to say, but some consonants are also hard for me to pronounce. The letter “K”, for example, is almost impossible for me. Ironic when you consider that the three people with whom I need to communicate the most are my wife, NicKy, and my two caregivers, KasKile and KiKa!
The result of all this is that I don’t even try to speak much at all any more. And when I do attempt to communicate with my voice, it is with a very limited vocabulary of familiar words. This is the frustrating part. There are things I’d like to say; jokes I’d like tell; and comments I’d like to make, but often by the time I spell or type them out, the moment and relevance has passed.
However, I am very grateful that I can still communicate via my computer with email, cellular phone texting, or using a monitor attached to my laptop. I’ve also almost finished devising a system for me to spell words using my eyes in situations when I am away from my computer. I’m also grateful I am not Greek like my wife—they can’t talk without using their hands!
In a previous post I wrote about how powerful our expectations are and that we all have expectations of everyone from ourselves, to others, to even God, Himself. In this post I will try to unpack my expectations of God. Since this has more to do with my relationship with God, I have included it under the spiritual thread.
As unspiritual as it may sound, we all have expectations of God. Some expect Him to remove all pain and sadness from their lives. Some expect Him not to allow any suffering in the world. Most of us expect God to hear and answer our prayers.
I’ve seen many different reactions from people when God doesn’t meet these expectations. Disappointment, disillusionment, anger and confusion to name a few. But the first question we need to ask is whether or not we as God’s people have the right to have expectations of God.
Putting it another way, is having expectations of God a vain attempt to elevate ourselves equal to or above God? As always, our example is Jesus, “Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness.“ (Philippians 2:6-7).
During Jesus’ interactions with the Father recorded in the 4 Gospels, He never expressed demands. Rather, as would later be written, He “in everything, by prayer and petition, with thanksgiving, [presented His] requests to God.” (Philippians 4:6). If our expectations of God are really demands in disguise, we are, at best, setting ourselves up for disappointment. It will always be unrealistic to approach God in this way.
It’s been my experience that, rather than approaching God with a list of expectations, a better way is to approach God with a sense of expectancy. Expectancy that God will do what He has promised to do; expectancy that God knows what is best for us and wants us to have it; expectancy that God will provide all that we need in order for us to accomplish His will.
So how has this made a difference in my circumstances? Well, if I had had a list of expectations of God, I would have been asking questions like, “Why me?” “Why haven’t I received my healing yet?” “And, how does God expect me to do His will with a body and voice that’s getting weaker by the day?”However, because God wants what is best for me, because God keeps His promises, and because God’s will and purpose for my life haven’t changed, I’ve chosen expectancy over expectations. Every time I start to feel a sense of frustration over something I can no longer do, I chose to replace it with a sense of expectancy over the things I can still do. Every time someone prays for my healing, I have the same sense of expectancy, but because it’s not a demand, there’s little room for disappointment that it hasn’t happened yet. And every morning (OK, most mornings) I start the day with a sense of expectancy that God can and will use me to accomplish His will during that day.
In a previous post I wrote about how powerful our expectations are and that we all have expectations of everyone from ourselves, to others, to even God, Himself. In this post I will personalize this truth by sharing some of my expectations that have affected my relationships with others. Since this has to do with relationships, I have included it under the relational thread.
I do have to be careful not to expect too much of people. And it is especially easy for me to have unrealistic expectations of those closest to me on a daily basis, namely, Nicky and my two caregivers. They have become so good at anticipating my needs that I sometimes get frustrated when they don’t. I’ve had to learn the rather obvious lesson that they can’t read my mind. At these times I just need to remind myself how blessed I am to have people around me who care so much and who are willing to do whatever I need.
One particularly troublesome area is communication. As my speech has deteriorated and become softer, it has become more and more difficult for others to understand me, especially if there is any background noise. I’m learning to be more realistic about when to attempt to communicate with someone. And when someone doesn’t understand me despite my best efforts, I sometimes get frustrated—not so much with their inability to understand, but with my inability to communicate clearly. I try not to show my frustration because it usually makes them feel bad unnecessarily and only leads to more misunderstanding.
In reflecting on the responses of people around me, I can say that most people have far exceeded my expectations. Friends and especially family have been incredibly supportive of both Nicky and me in so many ways: emotionally, spiritually, financially. So much so that the local representative from the MND Association has been amazed and has asked if we’d mind if she focussed more on those who don’t have such a strong support system.
Two groups that have been very supportive are our church family and the school community. The leadership of the local church have been wonderful. Since my diagnosis they have been so understanding and sensitive to our needs. And the rest of the congregation have gone out of their way to help in any way they can. We have also received so much support from the staff and parents of the school where Nicky and I have served as Head of Student Affairs since 2004. But it has been the pupils that have continually exceeded our expectations. Rather than shying away and being uncomfortable around me, they have been eager to help me and have always treated me with respect and dignity.
I’ve tried hard not to allow unrealistic expectations to negatively affect my relationships. I don’t always succeed, but I am blessed to have people around me that are very gracious to me when I fail.
In my last post I wrote about how powerful our expectations are and that we all have expectations of everyone from ourselves, to others, to even God, Himself. In the next few posts I will personalize this truth by sharing some of my expectations that have caused me some frustration and have affected my relationships with others and with God.
First, my expectations of myself… I’ve always been quite an active person. So having a disease that increasingly limits my physical abilities has been a challenge. At first I expected to be able to maintain my previous levels of involvement in our busy social life, church meetings and school activities. This resulted in me exhausting not only myself but also many of those around me, especially my wife. This finally drove home to me the fact that my expectations of myself and Nicky had been unrealistic.
After many efforts to carry on keeping life as ‘normal’ as possible, Nicky and I decided to stay in on weeknights and to limit ourselves to only one social engagement per weekend, preferably during the day. Late nights are not very kind to my body, especially when we need to be up at 6:00 a.m. for school during the week.
We’ve also had to make some difficult choices regarding our involvement in church activities. After consulting with the leadership of the church, we stepped down from leading our homecell group on Tuesday evenings and now only attend homecell meetings if we or our neighbours are hosting the meeting. In addition, we’ve had to choose to skip most of the Sunday evening prayer meetings, not because they’re not vitally important, but because it makes for a very long day at the beginning of the week.
Finally, I’ve also had to shift my expectations of my body. The progressive nature of this disease means that things I used to be able to do easily are now much more difficult if not impossible to do. This translates into having to constantly having to shift my expectations of my body. To further complicate matters, my physical strength also varies with my degree of tiredness, the time of day and my ability to take in enough fluids.Shifting my expectations of myself and my body has helped to reduce my level of frustration at the things I can no longer do, and has helped me in my efforts to remain focused on the things I can still do. In my next post I will explore my expectations of others and how they have affected my relationships with them.
I wrote some time ago about preferences and how as I have become more dependent upon others for basic functions, I have, out of necessity, relinquished control over those areas. I also wrote that a vast majority of the people that I have encountered in similar circumstances to my own display a remarkable degree of peace. I believe one of the keys to this is the ability to release the preferences that are actually not very important.
In this post I want to write about something else that plays a huge role in determining our level of inner peace and contentment. It governs, to a large extent, the quality of our relationships. And it’s not something about which we often think or of which we are even consciously aware. It is an expectation. More accurately, it is the numerous sets of expectations we have of everyone from ourselves to other drivers on the road to even God, Himself. An expectation is what we anticipate that we should observe or experience in a specific situation at a specific time.
Let me prove to you how powerful our expectations are. All is well as long as our expectations are being met. Now, think of the last time you were really proud of or impressed with someone. Chances are that it was because they exceeded your expectations in some way. On the contrary, think of the last time you were really disappointed by or frustrated with someone. It may have been something they said or did that upset you, or maybe they were just in the wrong place at the wrong time and bore the brunt of the bad day you were having! In any case, I can virtually guarantee that behind the emotions were one or more unmet expectations.
So what actually happens when our expectations are not met? We become discontent, and relationships break down. Several years ago, a good friend and mentor warned me against the downward spiral of “Dis’s”… Unmet expectations lead to Disappointment. Many Disappointments lead to Discouragement. And continued Discouragement leads to Disillusionment.
How do we avoid this destructive cycle? The key is in how we manage our expectations. As soon as we begin to feel frustration, we must stop and identify which of our expectations has not been met. Then we need to ask ourselves some probing questions… Are my expectations realistic? Does the other party know that this is what I expect of them? (If I haven’t clearly and specifically communicated my expectations, how can I expect others to meet them?)
Unrealistic expectations may be too high or to low. If they are too high, they will never be met and will result in constant frustration. If they are too low, we end up always anticipating the worst, becoming pessimistic and cynical. I have to be especially careful to make sure my expectations of myself and of others are realistic. In my next post I’ll write more specifically about how I’ve had to manage my expectations.
Previously, I posted an excerpt from a recent study sent to me by someone I know who was a participant in this study. It explained the effect that this disease can have on a certain area of the brain resulting in uncontrollable, and often inappropriate, crying and/or laughter. As I’ve written before, this disease affects different people in different ways, and this particular symptom is no exception. You can see from the findings of the study that individuals’ experiences vary greatly. In this post I’d like to describe my experience of this symptom.
My experience began long before I was diagnosed with isolated incidents of uncontrollable and at times inappropriate laughter. Since my diagnosis these incidents have become more frequent and have included crying as well. I’m especially prone to these symptoms when I am tired or under stress.
It’s hard to predict what will set me off, but a few patterns have emerged. Strong emotions in others often elicit an emotional response in me, but sometimes an inappropriate one. For example, not being able to stop smiling at a friend’s father’s funeral, or laughing at my wife when she is angry. This is often very embarrassing for me and easily misunderstood by others.
Another highly frustrating trend is for me to cry or laugh when I am angry. Some folks who know me may be surprised by this, since I very seldom get angry. But it does happen, and when it does, it is usually accompanied by one or both of these responses. Crying when angry is frustrating enough, but laughing is maddening. Imagine… You’re angry; You start to laugh; The angrier you get, the more you laugh; The more you laugh, the angrier you get that you can’t stop laughing; which makes you laugh even more! Eventually, it’s easier to give up on being angry and enjoy a good laugh, at which point you start to cry!
Basically, when it comes to laughing and crying, I can do either at the drop of a hat. Just thinking of something funny, let alone telling a joke, is enough to get me giggling. And I can sob uncontrollably at a sad story (The Shack really got me going), during a church service, listening to music, and yes, at the movies (even during Terminator)!The study also mentioned possible outbursts of anger and frustration as a symptom. I can’t say I’ve experienced much of this, but I can say that a level of frustration and even anger is a natural, if not unavoidable, result of living with this disease. If it weren’t for the peace that comes from an intimate relationship with God, that frustration would potentially be overwhelming for me to deal with.
