TREMORS = ISOLATION = DEPRESSION

Today I still can produce nice crafts even with minor tremors.  I'ts better
than just being a couch potato like I was before.

Okay so today I share another part of my life and what I deal with.  I am almost not yet 64.  Lol.  I am diagnosed with major depression, I tend to isolate...a lot.  And I was born with essential tremors that has definitely progressed with age.  What a vicious cycle that has been for me.  And  you wouldn't know because most of you have never walked in my shoes.

I never really knew I had tremors until I was in Junior High (Middle School).  I do remember my mom yelling at me often to quit shaking at a very young age of 5 on up.  But I never noticed them, felt them in my belly deep inside. I realized I had no control at age 13.  So, I began to isolate at an early age.

During recess I would run to the girls bathroom and hide.  At lunch time I would pack a lunch and eat walking towards an isolated area, then find the nearest bathroom until lunch was over.  How I longed to sit and eat with my friends in the cafeteria or with a group at a table.  I had spent my elementary years being bullied, and didn't want this to happen in my new school.  So I hid for fear of being made fun of.  Besides by that time I could not always hold food on my fork.  Nor could I make a drink straight to my lips without making a mess.  And to think I thought this was normal.  Lol, now I can laugh about it.  Thank God.


I thought this was normal because my mom shook a lot.  My younger brother also shook, but not as bad as I.  So in my life tremors, shaking and jerking was the norm. I would laugh sometimes, and said I was doing a new dance called the "Shake Rattle And Roll".  I didn't really see it as odd or a disability because we still had to function.  Tremor or not.  If we didn't do our chores, we would all get our butt's whipped.   Back in my day it was allowed.  Glad that is no longer the norm.  As I got older I had to work to pay rent and bills right.  Isn't that the norm?

Anyway, I  can  really see how the TREMORS = ISOLATION = DEPRESSION can link with one another.  I really don't feel depressed because I stay busy but I also have the Lord in my life.  I guess my body recognizes depression as a safe mode. I will say that since my DBS implant my tremors and depression are much better. I still deal with the isolation part.  It's still not good, but I am working on it.  I live in a high rise building and find it very difficult to get past my door.  The mail room is on this floor but on the other side of this building.  I've made it there 3 times this month.  I have to be really needy for something to get out my door. I am single and have dated only once in 20+ years.

So my tremors have caused me major depression and isolation.  I am not complaining at all.  I feel I am right where I am supposed to be.  I am on this journey of life for a reason.  Today, I feel the need to share what it's been like, and where I am now since my DBS implant.  I am not sure where I am going but I know it's going to only get better.  I really do love to get out, when I am with a family member or a friend.  I laugh and really enjoy my company to the fullest.  It's the getting out the door that's not easy for me.  Good thing I believe in miracles.  I am a miracle.  If you only knew:)  Till then,  Many blessings.

Sincerely,

Mary Helen

Finding Mr.Right

I am so excited to say, I found Mr.Right! Yes the right Doctor. I had my appointment with my new neurologist in Beverly Hills. I love it when you can find the a doctor who is in their profession for the right reason.  I've worked for many doctors, and have seen many doctors for years now.  It's sad to say that some are in the business for monetary reasons, and have not much interest in their patients well being.  But that's life I guess.  Good thing is, I get to choose my doctor.  Just because they are referred does not mean I have to keep going back.  Usually I just never go back.  Not this time.  Again I am grateful because my tremors were getting out of hand again.

Here is the same beer bottle in 3 stages of scribbling with my permanent markers because that's all I could do.

Today, my tremors worked for me.  Thank God.  Some days are worse than other days. I 

always tremor, no matter what. But, they have improved tremendously with my brain implant. 

On the days I tremor more, I don't mold, or play with fire so to speak. Or I don't paint,

 because of too many do overs. Today I thought I'd go with the grain, instead of against it. 

 My tremors that is.

Last Monday I was squeezed in to see Dr. Nicholas R Szumski (pronounced "some-ski) on an urgent basis because my tremors were getting out of control and was causing major muscle discomfort.  When I tremor, every muscle in my body become spasmodic and goes to the "rigid" mode.  Not fun.  My left hand was jerking uncontrollably, and my right hand was less severe with tremors and mild jerks.  Not to say that it was good, because by no means tremors alone  makes doing the simplest task almost impossible or difficult.  Thank God I had my brain surgery to have that Deep Brain Stimulation (DBS) implant two years ago.  Now I has to see a movement specialist to adjust my settings.

Dr Szumski is a Neurologist who is a movement specialist.  I was so glad to meet him, as I felt he was glad to meet me.  OK, So before I said I turn my DBS off and on every night to save my internal "brain pacemaker" battery.  Well, I am supposed to turn it off every night, but when I turn it on in the morning the jolt that shoots thought out my body is quite a charge and leaves me limp and unable to speak for a few minutes.  Sometimes, even hours.  So, I was leaving it on most of the time.  Oops, he was able to track my history. I didn't lie, I just didn't do what I was supposed to do. I didn't know that.  I also learned that folks with major tremors tend to lose their balance.  No wonder, sometimes I lose my balance, and sometimes look like I was drunk.

He had me do several tests with my DBS off.  They are quite simple for most of you I am sure. Like hold a cup of water, pour a cup of water into another cup.  Next test was to hold the cup of water to my face and drink.  I failed terribly at all of them because I was not able to do any of them with the DBS off.  Ugh.  I felt terrible again.  The full body tremors immediately began when he turned it off.  My head with the major yes yes nod giving me major whip lash.  My hands became useless once again, and my legs felt like putty.  By the time he finished adjusting it to a much better but not perfect, range.  My body felt like it had gone through a 20k marathon. I have been down most of the week since then.  But now I am turning it off regularly.  It is difficult for me to push the buttons, but I have a personal care assistant who helps me turn it on daily, and get over that jolt of electricity.

We also talked about occupational therapy to deal with the tremors because there is equipment, and utensils that do help but not much in my case.  Except for the adult sippy cup.  I still have my sippy cup which I put away and out of reach on top of the kitchen cabinet.  Hehe.  But, I will look into any help I can get.  Who knows, maybe I can learn something new.

We talked about looking into bio feedback because my body tends stay tight even when I am relaxed and feeling great.  Dr. Szumski said that since I was born with tremors I have probably taught my body at age 3 to tighten and hold my breath to deal with the tremors. That probably also explains why my face, and limbs get numb.  So now at almost 64 years I will try to unlearn some old behavior.  Like holding my breath to get that needed umph just to try and hold my body steady.  Hmm.  Interesting.

All in all it was a very good long over due visit.  I think we both learned something.  He learned something about me.  And I learned that he is a wonderful caring doctor.  I will make a follow up appointment in two weeks.  Again since he is booked forever, they will squeeze me in.  How fortunate I am.  I feel so blessed for all that I have.

I mentioned to him how I don't sleep but 5-6 hours each night.  I stay busy doing things with my hands like, cooking, crafting and writing.  I unlike most folks never had the opportunity to have a pair of hands that could do what I wanted them to do.  Needless to say, I never let that stop me.  Yes maybe I have to try and try and try until I get it done.  But today, I get to use this wonderful gift I was blessed with.  I am a grateful happy camper.

This was Dr  Szumski and my first session together, so we didn't expect it to be perfect like right after I had the surgery.  But it is much better  today than I was before I saw my doctor.  I am looking forward to meeting with Mr. Right again, my Dr. Szumski.  Well that's about it for now.  It's after 3 am.  Goodnight all.  Many Blessings.

Sincerely,

Mary Helen