Friday, August 15, 2014

Essential Tremor - The New Chapter Of My Life

A large part of the reason that I began this blog years ago, was that I wanted a place - an outlet - for my thoughts, and experiences. A place where I could express myself. A place where I could share my life journey with others who might also be having the same experiences that I am. A platform to essentially let others know that they are not alone.  One thing I have learned is that what we go through in life is never exclusive to us alone. Although it can often feel that way at times. Some challenges in life can feel very isolating when we are going through them, especially if we don't personally know someone else who is experiencing the same things that we are in that moment.  So, aside from recipes, horoscopes, videos, and life events (etc) this blog is really a continual story of my life. Chapters that I have chosen to share with you.

And in saying that. I am at the beginning of a new chapter in my life. One, which I am now going to share.

Beginning late last Fall, I started experiencing tremors in my hands. Primarily my left hand - but also the right one. The tremors would not last long, and I would not call them severe, however, they were present and prominent enough to freak me out!  They were uncontrollable.  And that frightened me.  But as I said, the first one lasted only a few seconds, while I was trying to pick up a pen from the table.  As I brought my finger and thumb together to pick up the pen, my hand began to tremor, first in the fingers and then like almost a ripple effect, I could feel it reverberate up into my hand and to the lower part of my arm. And then it was over.  I thought to myself - WHAT THE HELL?!?!

Since it was over almost instantly, I just wrote it off as a pressed nerve or something.  Perhaps in the way I was leaning over. Who knows.  I really didn't give it a second thought as I have had what you would call 'shakey hands' for all of my life.  Let's put it this way, although they were not what you would classify as a tremor, I could never be a surgeon. Although my penmanship is much like that of a doctor!  lol

A couple of weeks later I experienced another tremor.  This time it was in both hands.  I also began to feel a tingling in my arm.  OMG I'M HAVING A STROKE!!!  And just as instantly as it struck - it was over.

I immediately raised both my hands over my head and started to verbalize random sentences and stick out my tongue - to see if indeed I was having a stroke. Clearly, I was not.

Over the next couple of months, the tremors kept occurring, with tingling in my arm. The tremors were slightly longer in time, and would very in intensity.  So I made an appointment with my family doctor to discuss this with him.  I explained that the tremors were very random, typically when I was doing something - using my fine motor skills. And that they had taken place over the past 4-6 months. He did an exam and ran a bunch of tests.  Tests included a broad variety of blood work, an ECG and an MRI on my brain.

Can I just pause for a moment and say how incredibly frightening the concept of having an MRI done on my brain is?

The appointment with my doctor was in early April, and the MRI was scheduled for May. I don't mind saying that having the MRI done on my brain is not something that I want to repeat again any time soon. Quite simply put, it was awful!

Anyhow. I saw my doctor again in the first week of June and we went over the results.  My heart is good - excellent in fact.  Actually I have had three ECG's done in the past year - and all of them were fantastic.  The blood work was also good. Now for the biggie.  The MRI. The report stated that I did not have Parkinson Disease.  THANK GOD!!!! Clearly this was my biggest fear!!!  I exhaled a huge sigh of relief. And then it dawned on me that it could be brain cancer, a tumor, epilepsy. God only knows what.  But something was causing the tremors.

My doctor then told me that I have a disease called Essential Tremor.  Also known as Familial Tremor.  I had never heard of this before.  He printed out a couple of sheets for me and told me that I was in the early stages and in time we would have to discuss a treatment plan.  He then told me not to do too much research on it as I would only freak myself out.  He knows me very well.  And, of course, when I got home, I dropped my purse on the sofa, kicked off my shoes, logged onto my laptop and started reading everything I could get my hands on.

And. I freaked myself out.

I suppose that is the very reason why up until this point only my immediate family has been told about my ET diagnosis.  Quite simply, I needed time to absorb the information and get my head around how dramatically my life is going to change. And the challenges that are ahead of me. Not to mention the potential loss of some of my Independence.

It has now been two months since my diagnosis and I feel moved to write. So, here I am. Sharing this news where I share everything challenging in my life. On this blog. With you.

You will notice that on my blog, I have given Fibromyalgia it's own page. Simply because there is so much information and it is such a prominent part of my life that it frankly deserved its own space. I suspect that in time, ET will also reside in its own space on this blog. But for now, I will just give it its own space in the index as I will be updating the progress of this disease as time passes.

So, where to begin? I said that Essential Tremor is also known as Familial Tremor - Why? Well, because for a large majority of the people with ET, it is hereditary. If a first degree family member has ET, you are 5 times as likely to get it. If that first degree family member was under the age of 50 when they got it, you are 10 times as likely to get it.  And if that first degree family member is your parent, you have a 50% chance of getting ET in your lifetime.

ET is not gender specific. It is not race specific. And it is not age specific. However the majority of people who get ET, will get it between 40-50 years of age. Although it can develop in young children as well as elderly people in their 80's.  So, it really can strike at any time in your lifetime.

It is progressive. However, there is no blueprint for its progression. It can be slow but continual or it can be aggressive.  It varies from person to person.  In other words I can remain as I am now with very slow progression over the next decade. Or all hell can break loose in six months. However, the likelihood is that it will progress over years. But there are no guarantees.

ET is not fatal.  But there is no cure.  Treatments for ET include beta blockers, epilepsy medications - separate or multiple medications may be used together as a treatment plan. Failing success with medications, the next course of treatment is brain surgery.

The primary differences between ET and Parkinson's are really when the tremors strike. In Parkinson Disease, a tremor can occur while you are in a resting position. Just sitting on the sofa watching TV and suddenly your hands start to tremor. Parkinson Disease also will typically involve fully body tremors and can affect your gait. PD is also not hereditary.

ET on the other hand, is 8 times more common than PD, and will typically cause a tremor when you are actually doing something. Something as simple as holding your hands out in front of you will cause your hands to shake. ET usually begins in the hands (one or both) and can involve the arms in the tremor. Further progression of ET may involve the hands, arms, head (side-to-side 'no' motion, or an up and down 'yes' movement), tongue, voice, chin and sometimes the trunk. It rarely involves the legs. Although it may. Additionally ET can cause cognitive impairments as well as migraines.

With all of this in mind, it is clear that one's life can be deeply impacted by ET. Writing, tying shoelaces, putting on make-up, putting on earrings, painting your nails, texting, drinking, eating .... the list is really endless.  I mentioned that ET in and of itself is not fatal, however, one must be careful when in the later stages of ET while using knives or cooking. Many serious injuries can easily occur while trying to do every day tasks with tremors.

I have seen that there are many tools available for people with ET (as well as PD) such as weighted utensils, cups, pens, etc. And there are lists of ways to make one's life a bit easier while living with this disease.  I will go into those types of things in future postings as things begin to progress for me.  (Or as the mood strikes lol)

For now, this posting is partially informational for you. And partially therapy for me.  As I said, I have taken the past two months to try and absorb the reality of this disease and how it will affect my life. And I have rarely spoken about it with anyone, other than to inform immediate family and those closest to me about the diagnosis. I suppose saying the words out loud makes it real.  Which is part of the reason I have not done a posting about it up until now.  But, here it is. And it's real.