Well the year is quickly coming to an end and I’ve only posted one blog which was also the case in 2014 when I said that I wanted to start writing again! I suppose there’s many reasons (excuses) some valid and some not, but the bottom line is that I can’t really call myself a blogger anymore. Fortunately this is something that I can change so I’m squeezing in one more blog for 2015.
Transition is defined as: passage from one state, stage, subject, or place to another. I suppose any transition can be viewed as good or bad depending on one’s viewpoint and circumstance. In my experience with multiple sclerosis every transition has been bad hence the title of this blog. I was diagnosed with MS in 1996 so I have faced many transitions during that time. The disease started off with the typical relapsing remitting diagnosis however, my rate of relapse was not typical. My relapses were hitting me back to back and hard for the first two years each time leaving a deficit in at least one functional system, which led to my first transition of no longer being able to run or jump. Yup, that sucked but it was just the beginning.
As time progressed, my walking difficulties became not only obvious but very onerous as well ushering in the next transition of having to use a cane. I guess that one wasn’t so bad because it did help me to walk better and let the world know that I was dealing with a disability and not just drunk! This transition resulted in a drastic change to my work responsibilities since I was no longer able to carry out my work functions on construction sites. Again, not the end of the world, just meant that I spent more time in my shop and office. The next transition was one of the most difficult of my life, having to shut down my business. I can’t blame multiple sclerosis as the reason for having to close down my business but it was a major contributing factor. Up until now all I had known was being a boss, looking for a job and transitioning to an employee rather than employer was extremely tough but not as tough as having MS. By this point in time my physical challenges were significant and interfering with the quality of my life. My walking distance was limited to under 500 feet preventing me from doing many things with my family. Something I had avoided consideration of since day one of my diagnosis was having to use a wheelchair, but that time was now painfully upon me. In the end I got a scooter and it wasn’t the end of the world, but an extremely difficult transition to accept and you guessed it… It sucked! As time went on my physical challenges became increasingly more difficult and disease progression was obvious. As is unfortunately too often the case, the weight and impact of the disease and uncertainty over the future became too heavy for my spouse. Now I had to deal with the transition of divorce and losing my children, one of the most difficult yet.
Life does go on though and we must try and move forward, as hard as that may seem. In the end I had to find a roommate in order to afford housing but that was one transition that worked out well as I found a new best friend. By this point in time my disabilities had become very progressed causing great difficulties for me but things were about to get worse. I had pretty much accepted the physical challenges that come with this disease but I was very reluctant to accept the numerous other possible problems that can develop namely cognitive difficulties. When issues started to develop in my workplace, I was the last person that wanted to admit having difficulties with my short-term memory and cognitive functions. In the end this was an unavoidable consequence, by lunch my energy level had been zapped to zero and my work performance did suffer. It was at this point that my doctor recommended that I stop working, if I had disability coverage why would I continue beating myself up every day trying to work? I took his advice and as of October 2007, my working days were over. I’d had a job since I was 15 years old and owned my own company for much of that time transforming myself into a workaholic. I wasn’t sure how I would handle not working but I knew for a fact that this TRANSITION WOULD SUCK! I knew I needed to find some new interests which is how I found writing.
As the next several years passed by, life didn’t suck it had just changed and I had to learn to cope with those changes. The disease continued to progress, slowly mind you, but never stopping. I however could not let that stop me, my life was still filled with blessings. The best blessing of all was falling in love again and finding my new loving and supportive wife. Finally a good transition! We moved into a new house that I could easily get around in, I finally had my children back and two new stepsons to boot! This was my new life and I had adapted to it however, MS didn’t care and didn’t stop. The progression continued and within three years I was no longer able to walk, even with a cane. I was not even able to navigate my way up a three rise staircase. Another transition and yet again, IT SUCKED!
Not to be deterred, I was able to have a lift installed and my indoor isolation had been solved. I now had some independence back in my life! Even though my legs weren’t interested in walking I could still move my right foot from the gas to the break allowing me to continue driving. In the span of one year between 2013 and 2014 I suffered three MS attacks, each one preventing me from driving. Eventually my legs recovered enough from each relapse to go back to driving but things were getting pretty sketchy after my third attack. It was getting to the point that at times I would need to use my hand to help manoeuvre my leg and foot between the gas and brake pedals. It was at this point that I had to pull myself off the road, my situation just wasn’t safe anymore. So now I couldn’t drive and you guessed it… THAT SUCKED! Again, I was forced to overcome an impediment to my independence. I was never really sure how hand controls worked in a vehicle but I was under the impression that they would be very expensive. It didn’t matter, at this point I had to look into it and to my surprise it was a very simple set up. I was able to have hand controls installed in my van for $1000 and I was yet again in the driver seat.
As I continued to knock down barriers to my independence this damn disease continued to knock me down! It was great that I could drive again, but that didn’t put the brakes on my disease progression. I was still able to get myself out of the driver’s seat to the back of my van by shuffling around using the van as support. Pulling out my ramp and reaching in to back my scooter out was becoming a real chore. This whole process eventually became too difficult for me, I used to be the master of loading and unloading my scooter so it was completely disheartening to lose this ability as well. From this point onward it was my wife who had to become the master. I hate to admit it but I think she was actually more proficient at the process than I was! At any rate I was screwed again, did I now have to bring my wife with me to be able to go anywhere? Another sucky situation to try and overcome! I knew exactly how to solve the situation… a new van. The kind of van that has ramps built right in that would allow me to drive my scooter right into the van. I had looked at these vans at Shoppers Home Health where I bought and service my scooter, they were awesome but way out of reach! A new van was running $65,000 for a Dodge Caravan and up to $80,000 plus for the Honda or Toyota, a real pipedream at this point in time. I was informed that they do receive second-hand vans that might be affordable and within two weeks I got a phone call from the service manager that a van was available for only $16,000. By the time I was able to rearrange my finances the van had already sold but that turned out to be a good thing. Another van was scheduled to come in within the next couple of days that looked like an even better deal. This van was a 2006 Grand Caravan, one year older than my van which didn’t sound exciting however, the story got better. There were only 68,000 km on this van, the previous owner had spent the winters in Arizona so this van had never even seen snow! It was in awesome shape but would also cost me $4000 more than the other one. That part sucked because I was just able to squeeze enough money out of my finances to cover the cost of the first van, coming up with $20,000 was going to be a real challenge. At any rate I wasn’t going to let this one slip out of my fingers so I had to put the rest on my credit card, OUCH! That pain would dissipate quickly with the joy of gaining my freedom and independence once again.
My ultimate point is that multiple sclerosis does suck! The key is to not let negativity and self-pity take hold and that is sometimes very difficult to do. It still does affect me even though I think I hide it quite well my disposition at times can still be a little grumpy so I’m told. I can’t hide much from my wife; you know how that goes. It’s easy to become less motivated as I continue to lose more abilities and this has been the case for the last few years. I’ve basically fallen into a bit of a funk and I always advise to do whatever possible to stay away from this. I noticed my body getting weaker, my core and leg strength had deteriorated quite noticeably. I suppose this is to be expected when I’m just sitting on my ass all day, not doing any weight-bearing activity and turning my posture into that of a crippled old man. I realized that I was losing things that I really didn’t have to. I really was beginning to feel stronger over the last six months and realized it was time for me to take control of what I can. I needed to get reengaged with some type of exercise but I needed a different approach than just going to the gym and randomly choosing a machine to work out on and creating my own programs. I was looking for a more professional approach for evaluation and setting up a fitness program so I contacted the MS clinic and was enrolled in the CAR program (community accessible rehabilitation). This program provides access to many rehabilitation disciplines such as physiotherapists, occupational therapists, recreational therapists and much more. It basically provides the physical and mental supports to develop goal setting, more community interaction and involvement.
I have also been set up with SCI (spinal cord injury clinic) which is a fitness and wellness centre with state-of-the-art equipment and professional trainers. I’m setting up a program for improved cardiovascular fitness, increased muscle strength and improvement of bone density. One of the pieces of equipment I will be using is the FES bike (functional electrical stimulation cycle). This machine combines electrical stimulation and assistance from a motor to help people with spinal cord injury, or other neurological conditions peddle a stationary bike. Electrodes are placed on the skin to allow electrical stimulation to reach the muscles to achieve smooth and natural pedaling. In addition to the bike I will have an entire physical routine set up by fitness experts so I’m looking forward to working hard and achieving some improvements. I am also looking into a program operated by the University of Calgary which would allow for a very similar program as SCI and they also have the FES bike. I know that getting back into physical fitness will improve my energy and mood not to mention the increased community interaction and involvement that have been missing from my life.
As stated, I’ve always advised against a self defeatist behaviour and mindset. Maintaining a positive attitude is key to staying out of that vortex of self-pity and utter lack of motivation to do anything positive for yourself. I realized I needed to snap myself out of a negative mindset and regain my positive can-do attitude, both physically and mentally speaking. Now it’s a matter of following through on what I’ve started. That won’t be hard once I begin to see physical results from working out and feel the benefits of human interaction and involvement in something meaningful. Getting back to writing should also give me some new energy and stimulation. Now that I have the van there is no excuse to not get out and reengage socially with friends. Yes, some transitions really do suck but it’s how we choose to deal with change that determines how that change will affect us. Time to get rid of excuses and as Nike says,” Just Do It!”