Living with tremors today 2/11/13

Another day of tremors. They are getting worse daily. I can see it, more so , I can feel it.  Wow I haven't experienced this since I've had that DBS (Deep brain stimulation) implant 2 1/2 years ago.

I feel so medicated from yesterday's pill that I really don't want to take another sedative today.  But in order to do my basic functions, not cooking or crafting, I must. It not only sedates me but it affects my breathing too. That, I don't need.  It kills my energy.  My inners are trembling and makes me feel uncomfortable, even nauseous.

Tremors are quite straining as I use what muscle I have to try and steady my hands, head and legs. For some reason I have a bad habit of holding my breath while I attempt to do something (as if that is going to help). I find that I am always unintentionally holding my breath.  Even the simplest of tasks which are done by anyone, usually without thinking have to become a plan as to how can I do it safely if possible.

So today I made that phone call to schedule an appointment with the new Neurologist who is a movement specialist.  There are no immediate openings, but she will call me as soon as there is an opening and squeeze me in as urgent. Thank God.  I've sliced my hand twice recently in the kitchen doing simple things.  I pray that it is just a minor remote control adjustment.  Oh yes, I forgot to mention that with this implant, it comes with a remote control.  I turn it off every night right before bed to save on the internal battery.  Immediately upon awakening I turn it on so I can function.  When I do turn it on I have to remain sitting as a strong jolt of electricity surges through my body.  Sometimes it curls my tongue.  But after a few minutes I am ready for anything. Haha, I like to call anything I do, my adventures.  Anyway, that internal battery that is implanted in my chest is like a pacemaker.  Actually it is a pacemaker but for the brain.  This battery is good for 5 years.  It's only been 2 1/2 years.

Only problem is now that I can use my hands, I don't sleep much.  LOL, I am so grateful for having been given back these gifts that I use them every minute of the day.  I sleep no more than 5-6 hours daily ready for my next adventure with the use of my hands.  For example, like blogging.  I couldn't type before because I couldn't use my hands. Now, I cook, craft and blog.  Because today I can.  If you scroll up and look to the right you can see some of my work titled, Things I Can Do With Tremors. I am so grateful for all that I can do that I believe one way to give would be to share my knowledge.  At 63, we do have knowledge right?  Thank God.  I pray it's just a minor adjustment.  Anyway, Many Blessing to you.

Sincerely.

Mary Helen

Living with Tremors today

Today, sadly to say my tremors are really bad.  I have almost no control of my left had.  My right hand is trembling,  but my left hand jerks back and forth upon trying to do anything.  I've made so many messes today, I resorted to medication and not do anything.  Not even cook today.  Because,   it is days like this that any tool, whether it be a fork, or simple cup can be a dangerous tool to hold.

Note to self...
CALL MY NEUROSURGEON.  Must get that Neurologist's number who is a "movement specialist".

On the other hand I am grateful, that I can use my hands when I can.  Before, I couldn't.  I thank God.

Mary Helen

Born With Essential Tremors

Well where do I begin.  First of all this is a touchy subject for me as essential tremors is something I would rather hide, or better yet wish it would go away.  But, that's not happening, totally.  But, today I can use my hands and live pain free due to a brain implant to help control the "seizure like" activity my body went through several times a day the last year before my surgery.  And posting this for the world to see is somewhat scary.  Some folks can be really cruel.  But I have the need to share my experience, What it was like, what happened, and what it is like now.  So I will begin.  It's after midnight so I will keep this brief.

I am a 63 year young woman born with essential tremors.  I was about 5 years old is when I noticed I was shaking.  My mom would always yell at me to tell me to stop shaking.  By the time I was in 7th grade, I entered Jr. High (Middle School).  I would hide in the bathroom during nutrition and lunch to avoid anyone see me shake.  I avoided school so much my mom took me out to work at to work full time as soon as I turned 15.  Back in my day, that was legal.  Dinner dates were a nightmare, as I would order food and then leave it there because sometimes my hand would start jerking when I least expected it.  Tremors are one thing...Jerks are another.  So I would pretend I suddenly lost my appetite.

I lived all of my life with tremors and jerks, and a lot of medication.  I forgot to mention that essential tremors progress with age.  I worked for 30 years able to do what everyone else did, but with more difficulty.  However, because I had to work just like a normal person I struggled to do the best I could.  And I exceeded well in that area.  Thinking back,  I think I thought tremors were normal, because my mom really had bad tremors till she passed.  My younger brother Johnny also had tremors but not at severe as mine, till he passed.  Essential tremors can be hereditary, and obviously with my family, that is the case.  Sad to say, my 42 year old daughter, and 23 year old son also tremor.  My son tremors more than my daughter, and it bothers him so.  I know because I can see it.  I know somewhat how he feels, right?

As I got older, I started getting very sick with respiratory problems and lost my energy to maintain my body steady and function at the same time...It was hitting me hard.  One more thing I forgot to mention, is that there are many types of tremors.  

• Some folks tremor with a head bob.  Either the yes yes syndrome, head bobbing back and forth, or the no no syndrome, head bobbing side to side.   I had the yes yes syndrome.
• Some folks tremor only with their limbs.  Hands or legs.  I had both, or should I say all 4 limbs:)
• Some folks tremor with their torso.  That was literally nauseating.  Check...I had that too.
• Some folks tremor with positional tremors.  They might stop for a second, but will start right back up upon movement.  Would you believe, I had that too.  Ha!

As years went by my tremors worsened.  It made doing the simplest things difficult, like brushing your teeth.  Have your banged your mouth with your toothbrush like it was a drum.  That would happen daily.  It really hurts.  Try holding a cup 1/2 full with any liquid.  Not very good at that either.  If it didn't hit the floor, it landed on my face, or clothes, with some of it in my mouth.  Eating was extremely dangerous as I would stab myself with a fork, if I could make the fork to my mouth.  That happened always.  I've had a few stitches in my hand from simply opening a bag of spinach with a small paring knife.  I have no feeling in one of my fingers.  Oh well.  All these things are easy for you to do, but I must say made my life very stressful.  I made mess after mess.  I couldn't keep up with myself.  Best just to stay in bed, and get sicker.  I did that very well.

Anyway, by the time I was 61 I was almost in constant "seizure like" mode.  My body had become so rigid, from the tip of my head to the tip of my toes. Every muscle in my body would contract from being so tight.  It was painful.   I thought I was going to be that way for the rest of my life.  

While I was waiting for my new apartment to become available.  I again got a bout with Pneumonia and after another hospitalization, succumbed to recover in a rehabilitation nursing home for a few months.  A few years back I heard about a brain surgery patient who had a successful outcome with a new procedure.  I thought, "whoopee for her".  I didn't have a chance, because mine was not that severe...so I thought.  One of my new Neurologists, Dr. Ravinder Singh in Beverly Hills, referred me to a Neurosurgeon doctor also in Beverly Hills. Dr. Adam Mamelak.   I made my appointment and had no idea what I was in for.  

Before I got too sick to work, I worked for doctors setting up their billing systems, administrator, etc.  Being sick a lot I also had to deal with doctors.  So I am very picky and choose my doctors carefully.  If I feel they are not properly servicing me.  I will never go back and find another doctor.  However, the minute I met doctor Adam Mamelak, I knew he was the one who was going to work on me.  I just knew it.

When Dr. Mamelak saw my condition, he immediately told  me he had never seen anyone with severe essential tremors like myself.  And he has done many brain surgeries before too.  Bingo, I qualify for the surgery!  I will go into that another day as I will remind myself I have a busy schedule tomorrow.

I had the brain surgeries in July and August of 2010  Both of them.  Ugh, right hemisphere, and left hemisphere.  It was a nightmare of an experience as I had to be totally awake, and no tranquilizers either.  But bottom line, if I had to do it again.  I would do it in a heart beat.  It has changed my life completely.  Thank God. 

One more thing, I was diabetic, had high blood pressure, high cholesterol...and respiratory problems.  Today, I am also free of all of the above except some minor jerks and tremors.  I am able to use my hands.  See I can now type.  Lol.  Yes, I can cook, and craft.  I take advantage of all the hours of each day to take the opportunity to use this God Given gift.  Hands that can work like normal hands.  Legs that can also now work like normal legs, as they too would give out on me.  

Today, I can now use my hands, and am now able to finally focus on me, my life, and what I can do to be of service.  Being almost free of tremors, has allowed me to pick myself out of a wheelchair, to the point I am running after buses.  Lol.  I can cook now again, I preparing my food as if it were medicine.   My energy has increased and have lost about 60+ lbs. since then, and I'm better than ever.  Today I care,  Then I didn't because I didn't see a light at the end of the tunnel.  I had almost given up on life.  Thank God, Today my life is filled with life.

I feel so blessed to have all that I have.  To have the use of my body back, makes me feel like a whole person, who no longer wants to give up again.  Ever!  Have you ever seen anyone with Parkinsons who shakes a lot?  That was me.  So if that is you, or you know someone who tremors,  there is hope.  Really there is.  So with that, I bid you goodnight and God Bless.   If you have any questions, please ask away.  If you would like to see what I have been doing for the past year come visit my home page and see all my cooking recipes, arts and crafts, and just my plain writing. You can tell I stay busy.  Today, I am a grateful happy camper.

Till then, Many Blessings,

Sincerely,

Mary Helen.

P. S.  Maybe one day if I am brave enough, I will video me with my "brain" pacemaker off, then on.