Thursday 26 October 2017

A new start - reassurance though technology

The months fly by and as we head towards summer and Christmas I thought it time to do something that I never thought I’d do and I joined the gym..... I’ve always been more interested in group or team training but as I have time it is the moment to do 2 thing -

1. Get fit and increase the strength in my legs after getting the knowledge that my MS has taken effect on my left leg and weakened the hamstring and calf.

2. Try to lose a minimum of 20 kgs 😬

Now the first one is easy enough with determination and a good plan... the second though is a little more daunting due to the fact I have to manage my BGL’s and insulin intake while doing intense workouts... what does make it a lot easier though in both mentally and physically is doing it with my Medtronic 640g with sensor. Let me explain this a little further.

Around 12 years ago I went on a similar path and lost considerable weight however at the time I was on MDI with only manual bgl teats. As you will know this information is good when you do the test however you loose the ability to know what is happening at any time inbetween the tests and this is where my problems occurred. As the body makes its own mind up for when it will loose the weight it caught me off guard on numberous occasions which saw the worst hypo’s I’ve had in my time with T1. They would hit in the middle of the night, in the morning or afternoon as a matter of fact any time at all.  This was both a time of achievement and fear because everything had to change and I had to do it half blind.

This time though I am put at ease with Smartguard on my hip. I have been working out doing a rotation of high cardio, group training and weights 4 - 5 days a week for the last 3 weeks and my blood sugar levels have been great averaging between 4 and 6 day and night. I have been reducing insulin intake on the nasal rates as required or as a pattern is formed. When I say a pattern I mean if I see the same thing happening for 3 consecutive days then I will make the change to the settings. This could be to the basal or bonus rates but depends on the situation.

Now I mentioned earlier I had Smartguard on my hip and this is actually a massive piece of mind while I am going through this and pushing my body further.... the sensor gives me the information to make changes where needed however the algorithms that predict a low before it happens is a true life saver. I wake to the morning and reach down to take a look through to see what my levels had been doing in my sleep. I see a fairly straight line with a few dips. In those dips my pump automatically shut down and then restarted when my levels were back into safe range. Now you could think that by shutting off the insulin then you could shoot up high but the algorithm takes it into consideration and sees my numbers sit between 5 and 6 on return. To many people this may sound weird but to not have to treat a low and to have the technology to do it for you is such a great relief. I still treat some stubborn hypos but at the same time if I do that I will restart the pump manually so that I’m not double treating which will cause a high.

So there has been a few other things I have noticed while I have been doing my workouts -

1. While doing weight work outs with cardio at the beginning and end my blood sugar levels will raise slightly during the workout and by eating high protein afterwords I am able to maintain an even level for another 4 hours or so.

2. High cardio such as spin bike classes do have the ability to drop my blood sugar during the session so keeping an ear out for my pump to shut off before a low is also a reassuring sign that I have the technology to help me through all I can push myself through.

So far this has only strengthened my satisfaction with the diabetes management that I have chosen with the 640g pump with CGM. It give both me and my family confidence that things will be ok.

Thursday 6 July 2017

When the year gets cold

The time of the year is here where the leave start to change, the temperature starts to drop, the winter clothes come out of the wardrobe and unfortunately the cold and flu season starts to kick into full gear. This means feeling horrible either yourself or seeing your loved ones go through it. This would all be fine if we only needed to manage the daily battle that these micro viruses bring us however with T1D it can mean a lot more.

This season has already been one that would be great to learn from but forget. The flu hit my daughters school and caused a number of usually healthy kids to be admitted to hospital to help combat it and get back to being healthy. My daughter was also the one who came down with both bronchitis and the flu. A day or so before the symptoms begin we checked her Ketone levels and we could tell something was coming as the levels had begun to rise. We prepared for the sick day management plan. Using the 640g we promptly increased her basal rate to clear the ketones while also making sure we had standard full sugar drinks as her blood sugar rates had not yet begun to increase. We settled in for the night with regular checks to see that everything was going in the right direction.

Without fail, the body never lies, the symptoms of a deep cough, runny nose, cold sweats, body aches and both increased blood sugar rates and ketone levels. The balancing act had now really begun. A trip to the doctors also meant that things would get a little more difficult as the main treatment for bronchitis is steroids and as you may or may not know steroids inhibit the absorption of insulin in the body which ultimately means even higher blood sugars.

Thank goodness for the 640g with the Smart Guard function as we made sure we had her continual glucose monitor in place and in working order. We set the basal rate to 200% of usual rates to ensure we can keep her blood sugars in check. Panadol / Nurofen was on standard 4 hour rotation and a good supply of blood ketone strips were found and obtained. For some reason the blood ketone strips seem to be a difficult to find as the suppliers do not see them as important as glucose strips and in fact they are as much if not more important. Even though you don't use them every day when needed they are a life saver.

Over the next 4 days the path had bigger ups and downs than the biggest roller coaster in the world and not to mention the emotional tax it takes on the care givers trying to make sure that they are doing their best to keep their little baby alive.

Thank fully the technology and management plans allowed us to keep her out of the hospital where her friends were seeming to call home over the same days. We managed the sugars through the pump, we had 100% visibility through the continual blood glucose monitor, we had the confidence in knowing how to keep the ketones down by having the strips and we then had all the regular components of trying to keep the cold and flu as easy as possible.

It is the season to be careful however we have the ability to manage through it all. With the right management plans and with the right team anything is possible.

Sunday 7 May 2017

One hurdle at a time...

This life is full of times where hurdles must be overcome to ensure that the path we are on stays just that, our path. When I speak of this we think of getting a meaningful job, making the right decisions on who to encircle yourself with and buying a house to name just a few however I think the one that is underestimated by a lot is health. Today I sit here after being off work for around 10 weeks not knowing what is to come. The time off has come from the health hurdle and it leaves me with the conundrum of where is it that the next junction in the path will take me or even which is the right direction to move.

My fingers are crossed that only a minority of people out there have to worry about this as it isn't my T1D that is the problem it is my MS and the view as to what would be the best for me for a long term solution. We have the capability to push harder and further to ensure we provide the best for our loved ones but at what point is too much when health comes into question.

My considerations -

It is only part, my immediate future, that comes into my head but more the long term. I have small children that I want to ensure I am as fit and healthy for well into the furlture. With the current damage done I know there is no fixing what is done but to take steps now to minimize what could happen may be the answer?

To work or not to work? I believe that in the heart of most men is the desire and drive to provide for their family and to be the center of the family holding it together. Being a proud man and father to have this now in question is somewhat a shock to your pride. At what point do you come to terms with a reality is different to what you were brought up believing to be the way? At what point do you make decisions that go against your character?

Support - I have come to understand within myself that one man can not do it all and sometimes it is ok to ask for help. A fault of mine in the past was that I was too prideful to seek help where it was needed thinking that we are responsible for ourselves and why should we seek help from others when they themselves could have troubles. The reason is that they care.

How to overcome your own thoughts? This journey with 2 chronic diseases has also put me down the path of depression and in that some days are better than others however in the days that are bad it is very bad. You battle like you do with T1D and your bloodsugar, you battle with you immune system wanting to kill off healthy cells around your nerves and you also battle within your own mind as to value, self worth, ease of life, togetherness and yes d pressuon does bring the thoughts of ones own life. I don't say this for sympathy I say this for awareness. Awareness that chronic diseases have a great effect on us all mind and body. Trying to balance your body is tough enough but also balancing your mind is such a challenge as I don't believe that we know what or how to fix it in completion.

These are but some of the main things flying around in my head and I suppose the reason I write it down here is to, selfishly I suppose, to get me to think more, to share it with people out there no matter where you are and no matter what chronic condition you have hopefully you will know your not alone and maybe just because it will shed some light on what way to go.

Chronic diseases have a toll and we need to accept it so that we are able to make the tough decisions when they come or if they come. It is about taking everything one hurdle at a time.

Friday 31 March 2017

Continual Glucose Monitoring - Things be changing? Well a little anyway

Currently in the world of Type 1 Diabetes there are 2 paths that can be taken -
  • Old School Path - This is the majority of people. This is anywhere between 5 to 10 manual finger blood tests every day. This means that in between tests all you have is your own  understanding of the way you feel to know if your blood sugar is at the right place or not. This also means usually multiple daily injections which will change in dose depending on you blood sugar level and what your going to eat. This path also sees no protection or awareness overnight which sees parents and people with T1D worry and loose countless nights of sleep.
  • New School Path - This path sees people and currently especially kids on a insulin infusion pump and instead of having gaps in understanding what your blood sugar is doing people have the ability to move to a continual blood glucose monitor which tracks and monitors blood glucose every 5 minutes and puts it into a real time graph to ensure the right decisions can be made at the right time. Medtronic have also taken it one step further and introduced SmartGuard which has automation that will shut down the pump prior to a low from happening which will lessen the curve of the low and possibly save lives.
  • Middle Road Path - This is a mix of both. Either Multiple Daily injections and a CGM or the Insulin Infusion pump with standard testing.
Yes I know I have been through this before in a number of my blogs however one thing that has kept people from making the jump from old to new is the price. The cost of living in general in Australia continues to increase and this is a preasure in itself however living with or someone with the cost of T1D is another burden.

Saying this there is word in the T1 world that our government has just made the announcement that there will be limited subsidy for CGM. This is great news. 

This announcement and funding will be open to kids with T1D but unfortunately it will not be open to adults. This is a good step in the right direction and there is mixed feelings from my perspective as I see it from both having a child with T1D who will be eligible and me who will not be.

So firstly as a parent of a child that is too young to manage her own T1D and the pressure and worry that it puts onto the entire family this is a much welcomed decision. This allows for ease of worry and concern not only at home but at school, with extended family, at the park, at the pool and in fact in every part of life. As she learns more and more about her Diabetes she has a real time view into what is happening at any given time and when needed it is there to back her up with the predictability that we all hope for.

I jump back quickly to school because having a CGM on gives teachers the ability to have a small piece of mind also. It doesn't take away from the tough task it is that we ask of them in looking after our kids but it gives them an idea as to what and how to do what is needed.

Sleeping through the night is also a massive benefit as instead of having to wake multiple times a night to manually test the CGM alerts and alarms only when necessary. If everything is fine then parents and kids will have the somewhat unknown feeling of getting a good nights sleep.

Now onto the perspective of being an adult with T1D and not being eligible for funding to get access to a CGM. This is tough, and don't get me wrong I do believe that from and over the whole world perspective we have the ability and access to the drugs and equipment that we fundamentally need for a price that is maintainable however I also believe that having a chronic disease should be prioritized over other conditions that ultimately have the lions share of attention due to the ability to possibly cure rather than funneling funds into allowing people to better the lives they live and ultimately saving money for the health system by allowing people to take more control through technology and better management processes.

We push to do the best we can and sometimes it is good enough and others it is just enough to get up to have access to what we need to live a better life is both the responsibility of the person and also the government to help provide all that can help.

Monday 20 March 2017

When the Invisible becomes Visible

For those that read this that live each and every day with a chronic disease that on the whole has invisible symptoms or invisible management techniques you'll know the frustration that it can bring. Not that it should ever need to be an excuse but the times where


  • You have a hypo and you have no choice but to not go to work due to the toll that is has taken on your body.
  • You have a hypo at work and people 1 don't understand what is happening or even why
  • Where eating something isn't as simple as just picking it up and keep going but it means constant calculations while predicting the future as best you can
  • Where falling so tired in the afternoon knowing that MS is taking hold and you have no option other than to stop and sit and simplify your thinking.
  • and the reasons just keep adding up.......
People living like this are some of the strongest people out there as we all have to live with every day pressures as well as everything else on top of our heads.

One of the biggest steps I have had to come to terms with is that with living with an invisible disease for 27 years my MS has now proven to make the invisible visible. To now have people notice that there is a difference by just looking at me is confronting. I am not saying that the change is huge but it is noticeable. The left hand eye droops, my right hand shakes and I have just realized I walk with a slight limp for some reason. I am assuming that something has been effected with the signals getting down to my legs. All things that are manageable however now things have changed that I can't hide what is happening which also means I have to ask for help.

For a person who has strong beliefs and pride in what I do for my family you can imagine how difficult this may be.

  • No longer can I push through and deal with everything without someone asking if I'm ok.
  • No longer can I expect to do everything without asking for help. 
  • No longer can I not think of the long term future as everything has limits.  
Being a single dad to 3 girls with 2 of them full time this doesn't mean that I don't still have my pride and determination to do everything I can but it does mean that at times the pride needs to be swallowed.

It has also taught me that even if everything was still invisible those that love and care and even the people around each and every person around us needs to understand what we all do each and every day to survive. Education and Information is key to ongoing success in what ever we do.

Wednesday 15 March 2017

Alt, Ctrl, Delete

I write this post after what I see as a defining time in my already multi-dimensional life. If you have read some of my posts you will know that I have had T1D for now 27 years however 3.5 years ago I was also diagnosed with another Chronic Auto Immune Disease - Multiple Sclerosis. Over the 3.5 years I had tried around the same amount of treatments. Now when I say treatments there is no cure and the use of the treatment is to slow down the time in between attacks. It was estimated that each of the treatments should take the attacks from happening every 6 months to 3 - 4 years apart. Unfortunately they only broadened the attacks to  happen every 12 months or so. Even though this was lengthening the time it still wasn't enough and the disease continued to be active with new lesions being picked up on the MRI's. Altered sensations also broadened from the left hand side of my face to the full left hand side of my body and a slight limp so with all these changes some tough decisions needed to be made.

The neurologist talked to me about a drug called Lemtrada and as usual knowing that they are the specialist I was open to thinking this was the next step that could work. I asked the questions like I usually do,
1- Will it have an effect on my T1D? The answer - It shouldn't but we haven't had anyone that has had both before. This was a shock to me and something that would play on my mind even up to this day.
2- What are the side effects? The answer was going to be long enough so they handed me the long list that I swear just had to cover all bases as I flicked through quickly and they ranged from a rash and fever all the way through to death and also everything in between.

They mentioned that there had been some good results in this drug with people with MS as the initial group had now been relapse free for 8-10 years and they have actually had their symptoms become better. Basically when caught early and treated with this drug (oh and minimizing contributing factors in life) the disease could almost me put to sleep. Basically there still is no cure however this was sounding good. As mine is still active there wasn't a second thought it had to be done.

So Lemtrada itself is an immune suppressant but what I didn't know is that it is actually a Chemo Therapy drug that is designed to target the immune system and kill off the white blood cells including the mutated cells that have been changed due to the MS. So as the title says it is like when you press Alt, Ctrl, Delete on your computer to give it a restart and reboot this is what I have done to my auto-immune system. This is a 2 year treatment but on the whole it could be a lot longer as I will be having monthly blood tests put in place to make sure we can watch for any possible side effects including kidney damage/disease. thyroid problems and a number of others that could come apparent any time after the initial dose.

I was told that the initial treatment will happen over a 5 day period where I will need to be given 3 days of IV steroids (Methylpred) and 5 days of the Lemtrada drug. This would be done as an outpatient in the Cancer Care Center. I specifically mention the Methylpred because this is the item that will have the biggest impact on my existing T1D. Steroids stop insulin from working within the body which means while on the steroids and for days to weeks after it is going to be a major roller-coaster trying to make sure my blood sugars are as they should be. What I wasn't prepard for was the fact that this steroid compared to Prednesalone activates almost instantly where as Preds ramps up at a slower rate so its not as much as a shock to the blood sugar. The first day of the infusions (which happened to be on my birthday) started with me making sure I drank a liter of water prior to the start. This helps with plump veins and also helps move the drug through the body. Anyway the steroids were started and within 20 minutes the roller-coaster had started with me watching the CGM show that I was rising and rising quickly; I increased my basal rate to 200% and through out the day had to give manual boluses to just try and keep it at an OK level. Unfortunately but understandable my levels stayed in the teens for the next 8 hours.

So from a T1D perspective the steroids were the only immediate effect however as this is a long term treatment fingers crossed it will stay that way.

The days continued with the same cocktail of drugs and I actually found it quite funny how when ever the nurses were dealing with the Chemo drug they needed to wear basically a hazard chemical suit and we sit there and pump that same drug directly through our body.

As the week continues tiredness takes hold, some heart burn, aches and pains, headaches, fevers and a rash begins. All treatable with antihistamine, panadol and some other minor drugs. This is actually a good thing as thankfully I was not allergic and also maintained drinking and resting as much as I could. This is no where near finished it is only the beginning however like pressing Alt, Ctrl, Delete you hope that when you restart the problem you were having is at least gone long enough to make a difference. I will continue to update how things move as it is interesting to get an understanding as to all effects.

The Next Chapter and Challenge with SmartGuard

It has been a while since I have done a blog but as it happens it doesn't mean that life with T1D has become any less important and in fact it has become more important as I have kicked over 27 years living with this disease and my daughter has now been living for over 3 years from diagnosis.

I am going to focus on a process that we have been going through with my daughter because this year she has started school. An exciting and nervous time for all parents as it signifies their little baby taking the first step of independence.

The usual start would see uniforms being bought, school bag being packed, lunches being made, hair being perfectly brushed and shoes being polished. On the day the nerves for both parent and child are high but for completely different reasons. Children are excited but nervous as they don't know what is to come and parents are nervous as there now not the ultimate dependency.

So you would agree that it is a big milestone but now with all of this add the worry of leaving your baby at school with people who have never heard about Type 1 Diabetes and having the responsibility of teaching the teachers how to keep your child alive. I can tell you that this is a daunting task.

Our process started last year in speaking to schools about there awareness of Type 1 and also to find a school that was comfortable in taking the responsibility for managing this chronic disease during the busy school hours.

We ended up settling on a small school with an awareness but in no way clear processes around managing T1D. The school had a grade 6 student with T1D however at 11 years old the child was capable of managing their own diabetes including blood glucose tests and injections. So the understanding on the actual day to day management had to be taught. We began, with the help of the class teacher and the principle, with an overall information session for all teachers that will have responsibility of care throughout the year. This session saw just how much the general population have been skewed towards the majority in Type 2 Diabetes as the understanding that T1D is a chronic disease was not evident.

So the first day of school arrives and along with the uniform, school bag, lunch, hair and shoes the survival bag was created and carbohydrate amounts were written down on each item in the lunch box. The survival bag consists of blood tester, ketone tester, hypo treatment foods, Glucogon pen and a spare set change and sensor change.

Having the Medtronic 640g pump with SmartGuard would become our godsend because instead of having to teach the teachers how to measure and give manual insulin injections they just had to learn the management of the carbs, activity and blood glucose levels. Even this is a big ask for any teacher. It was decided early on that no day would start without the CGM sensor in place with Smartguard being active. This would give both ourselves and the teachers peace of mind that there is safety in place when BGL lowers of increases. It gives teachers a direct view on what is happening at any given time.

The school days through out the first term is all about on the job training and we are seeing that the physical processes are just a small part of the puzzle. Teachers have to learn about activity, trends and the effects that different carbs will bring. As we live with Shiloh we know that certain circumstances will mean she needs carbs or insulin above or beyond the standard process. Trying to get the teachers to understand this is something that will come in time, well we hope anyway.

Another aspect we are tackling is trying to see if there is the ability to have a full time Teachers aid appointed to help as at the minute my daughters mother has to stay at school to help teach and monitor but without her there it is a very large responsibility for the one teacher. Discussions with the teacher and the Principle have everyone in agreed that an aide is required however the initial response form the state government authority says that as T1D isn't a life threatening disease then it doesn't warrant the help.......... I know I can hear you all now as I had the same reaction.......... After hearing this I set to work taking a look at what the departments actually deems as a condition that requires help. Taking a look through the detail on the departments website I found that in black and white it is written that  T1D can be life threatening and that aids are available for children are too young to manage everything themselves responsibly. Unfortunately it is still a process to have a case raised with the department of education and have obtained letters of recommendation from all of our doctors and past kinder teachers  to prove what it is actually like to manage a 5 y/o that has hypo unawareness and  how much constant attention is needed to ensure maximum learning can be obtained while managing all aspects of T1D.

My opinion so far is that it takes time and effort both physically and mentally to be able to make sure life as we know it continues and at every stage in life it will take someone who cares above and beyond to help. We have found a school that is doing everything we can and will continue to push to make sure there is help along the way.