Long lost friendships and new ones alike
This past Friday we all sat together like it was yesterday that we graduated from High School. And I felt at home. Even though I didn’t have much to do with most of them for the past two years it was a great feeling to just be taken as you are. It feels good to not have to worry about explanations and thus only have to think about what your topic of conversation actually is. Whether it is a highly educational discussions about profanities or it is simply just BS all together.
And I have to admit that despite my very depressive four weeks of redoing the first course the opportunities for new friendships arise now and again and even more than when I was stuck with the first-years, who generally search for a circle of friends rather distinctively. For the first time in a long time I feel quite content about myself, about my future and about where I am heading. And just like a good friend of mine said a while back:
“Look into the future, rather than in the past, because it is where you find true happiness.” (Loosely translated from German)
With this very cheesy line. Once more.
Till next time.
MS and SCA - Why it is not the same and why I tell people it is similar
Even though MS and SCA come with nearly the same symptoms, there is one specific difference. SCA isn’t treatable, unlike MS which can be successfully slowed down.
Put in very simple words: MS is the miscommunication between the cells of the brain and the cells of the spinal chord. They are simply unable to communicate properly anymore.
SCA is a degenerative disease that doesn’t allow the cerebellum to communicate with the rest of the brain anymore. Ultimately the cerebellum won’t be able to communicate to the brain that it is responsible for the heartbeat.
Therefore the outcome is death.
Even though there are no treatments as of now I tell people often that I have something similar to MS. In the current status that I’m in this proofs to be much easier, as people know far better what MS is and what difficulties people with such a disease have.
Since SCA is so thinly spread, 1 in 100.000, unlike MS many of my friends even didn’t fully understand what the disease really is.
Because of that, I will from today on explain the disease like this:
I have a terminal form of a disease that has almost the same symptoms as MS.
Like my English teacher used to say: “KISS” Keep-it-short-and-simple. Or as we used to say in reply “KISS” Keep-it-simple-stupid!
Till next time.
Thoughts on a service dog
Today, my aunt came up with an idea that was floating around in my head for a few days now. “What about a service dog for you?”
It would aid me in many different ways. I like to make lists so let’s do one with pros and cons for getting a service dog.
- Aid in daily tasks
- Provide me with protection when I’m alone in the city
- Make me walk him or her when I don’t really feel like moving around too much
- Give me reason to be proactive instead of being passive
- Develop a close bond between the dog and myself when I am the one training him
- Provide people with a clear visual image of the fact that I am in fact not drunk (most of the times)
- Needs to be trained over the course of a few years
- Weekly trips to the trainer
- Food and other accessoires
So, apparently the Con list is much shorter than I initially expected it to be, as it is apparent that a trained service dog can be taken virtually everywhere. And no one will tell him or her to stay outside if I need him or her to be with me.
I like the idea of having a dog that takes care of me just as much as I take care of it.
You virtually start a family when you get a dog. - My mum
I like this idea of my mum. But it is never the less a quite lengthy process to find a suitable dog and to train him, it will be a challenge but nevertheless a challenge that I am willing to take on.
Till next time.
What I do on a bad day?! First off let us define a bad day. It is a day when I get up in the morning and the very second thing I do is I bump into the doorway, and it is not the kind of bump that you would just give away as a morning sickness kind of bump. No it is a full fledged shoulder bump which is involuntary. The next thing is my own feeling, not too well but not enough to be sick. Over the course of the day it is more a feeling of not wanting to move vs. simply unable to move properly.
This feeling results in me spending the day as uneventful as possible. I do not walk much, though I did do my laundry today, as well as cooked for myself. However, besides that I try not to move too much around. And what is a huge nono, I do not go out. I simply cannot stand people looking at me like I am some kind of drunk idiot just trying to reach his next drink. I try not to be that resentful towards people I do not know, but the judgement in the eyes of total strangers gives me the creeps.
Till next time.
Horvi, the wonder treatment?
Horvi is a form of scorpio toxins that you can inject, spray or drink. It is meant to aid in my walking abilities. As there is no treatment available at the moment, I decided together with my alternative practitioner to try it out.
Nobody knows for sure what the mind is able to influence and how it works. “It’s about functioning properly, not to function perfectly.” I will keep you updated on my experiences with the wonder drug.
Quick recap of the last two days. They were extremely well days, I felt as good which I haven’t felt in a long time. But there is one thing that I simply couldn’t get out of my mind. The looks of bypassers when I look like I’m boarding my car in a drunk manner. I am always tempted to shout them in the face “Call the cops on me. I’m not drunk, I’m handicapped”, but when I try to get myself together to do something like this I always fail to go through with it.
Till next time.
I am 22 years old, male, caucasian, currently studying and I have a handicap. Quite recently I was diagnosed with degenerative cerebellar disease, an illness which has no cure neither proper treatment as of now.
The diagnosis itself was not really that suprising to me. I had signs of the disease before and since January of this year I was quite unsteady in my walking abilities.
This blog is pretty much only my way of tracking the severeness of the illness. Currently I am a number 6 on the scale of 0-40. 0-3 is the norm and everything else is diagnosed. This blog will also function as a means of learning about the sickness myself and then presenting it here.
Well, this is only the start of the rest of my life. May it be a strong and prosperous one.