What happened to “the fun” Barbie?

As far back as I can remember, people always commented how I was the life of the party! I am not shy, love people, and love to have fun!! I love music and dancing, going out to dinner with friends and family. I love sports. I played tennis, golf, racket ball, and lots of other games!  I guess you could say I was popular. People have said that to me. I was pretty competitive socially in sports.

I was a “fun” mom!  I taught my kids how to ski so we could go skiing on their school vacations. We also loved going to the beach in the summer.

I was always smiling. I had “fun” with my close friends. We went away with our families or just “the girls”.  Life was good; life was fun!!

What happened?  Dis-ease crept into my body. Not one, but two! And both progressive.

Okay,  so when I was diagnosed with MS, I was relapsing and remitting(RAR).  I only have 2-3 lesions.  Not so bad. I could still have “fun”. I even became certified in becoming a Yoga instructor.  I could still dance. I had energy and basically nothing much had changed. In fact, it made me stronger.

I loved teaching Yoga.

To be continued…..

PART II

Life changed a lot for me.  With my strength I made many major life decisions.  My husband and I separated after 26 years of marriage.  It was a tough decision!  I was always dependent on a man. Now it was time to try life on my own.  I still loved him but I needed to do this for my own psychy.  My children were not happy, but they would get it one day.  I love them with all my heart!  They make fun of me, but I call them my three jewels!  Marni, Jordan, and Justin are the best!  They give me strength to cope with my illnesses. 

Anyway, I moved from the suburbs to the city.  The burbs were very secure; the city was a whole new experience.  Fells Point in Baltimore is “fun”!  A whole new lifestyle. I met so many new friends from all walks of life. I also met Bob, the man in my life for the next 8 years.  I’ll go back to that later.

So I began teaching yoga in my new life downtown. I taught 3 classes a week,  had some private lessons and substituted many classes. I loved it!  In fact, when I went away to Mexico with Bob, I taught classes there too. 

I still had MS, gave myself a shot everyday, but was a happy camper!  I didn’t have many flair ups; actually hardly any and I dealt with life with a smile on my face!

BUT, in 2012, a major life change appeared in my life.  I went to a wedding with Bob and got up to dance.  I loved dancing! Any kind of dancing made me happy!  My body just moved and grooved to music!  This time was different.  My feet wouldn’t move.  They felt like they were in two cement blocks!  It was such a strange feeling. I was scared; what was happening?? Bob had to carry me out.  How embarrassing! I called my neurologist that Monday morning thinking it was an MS flair up.  

To be continued…

January 17, 2017

To continue my story…

I went to my neurologist and he did the normal neurological testing.  He concluded that I had MS with Parkinson’s symptoms. What does that mean?  I was not a happy camper!  You see, my dad had Parkinson’s and he gave into the disease. He was diagnosed at age 62.  Eighteen years later he died of blood cancer.  I witnessed him wither away from a big handsome man to a little old man.  He was in constant pain and this awful disease broke him.  Parkinson’s took over him!   He didn’t overtake Parkinson’s.  

Back to me…. 

My neurologist decided to put me on a PD medication.  It was supposed to help with my slow, heavy movements. But, it didn’t.  I seemed to be getting worse. It was hard for me to stand for a long time and I was slower than usual getting ready to go out or just plain walking.  What was happening? I was afraid tho hear that I had full blown PD!  I called my neurologist and he referred me to a neurologist who specializes in Parkinson’s Disease.  I was a nervous wreck!  He said I probably don’t have PD, but I may have some symptoms. 

This was over four years ago.  So I made the appointment and was so afraid to hear what he had to say that I took Bob with me.  When I walked into his office, the Dr was shocked. I was in high heels, walked fine, smiled, and didn’t “look like I had PD”!  That is what he concluded after a neurological test for PD.  He agreed with my MS doctor but maybe he was missing something.  There was a new nuclear test out that would look at the loss of dopamine.   According to Wikipedia,

” In the brain, dopamine functions as a neurotransmitter—a chemical released by neurons (nerve cells) to send signals to other nerve cells. The brain includes several distinct dopamine pathways, one of which plays a major role in reward-motivated behavior.”

http://www.news-medical.net/health/Dopamine-Functions.aspx.  It is also the conductor of our movement.  So, therefore, it is a movement disorder.   What most people think of PD, they think of tremors!  I didn’t have any tremors!  I just had weakness in my legs and slow movement.  What I learned from the doctor was that PD was a clinical diagnosis. If a person has two of the symptoms, they have Parkinson’s.  Did I have two of the symptoms? I did have slow movement and when I walked, I didn’t swing my arms.  That is also a major indication of PD.  Automatic movements like that are lost when a person has PD and the dr. noticed that too.  

Off to the Datscan…..

I wasn’t a happy camper.  The scan was at Johns Hopkins in downtown Baltimore, 10 minutes away from where I live. My girlfriend went with me for support.  It took a long time for the whole procedure so I was happy to have her with me. As we left, I asked the radiologist about the results.  She said she wasn’t allowed to discuss it with me but she will send the results to my doctor.  Then she wished me luck!  Not a good sign. 

This can’t be happening to me!  The first dis-ease!

I can’t say that I had a hard life.  In fact, I got mostly anything I wanted.  I knew had to play the game especially with my father.  In fact, he’s the one who taught me!  My dad was a tall handsome man that was very popular and very well liked.  He definitely was “the man” of the household.  He was very strong willed and at times raised his voice to my dear mother.  I would characterize him as verbally abusive to her, but at the same time very loving to her. My mom was a beautiful woman inside and out but she took the verbal abuse from him. I think she felt the apologies overrode the abuse.  

My dad came from a very poor Jewish family while my mom came from a very wealthy Jewish family.  But Dad in his Coast Guard uniform swept my mom off her feet.  She was a volunteer at the USO where he frequented. They met, fell in love and got married.  They had 4 children, 3 boys and a girl, me!  My oldest brother was Autistic so much of my moms life was consumed by him.  My middle brother got the short end of the stick, being blamed for everything. Then came me, the princess who could do no wrong in my dad’s eyes.  That was our family until 7 years later when the third son was born.  You never could blame anything on my baby.  I say “my baby” because I took care of him most of the time.  He was like my little  human doll.  

So getting back to me.  My father treated me as his princess but a price came with it.  I might go into that another time.  I will tell you that he said I was perfect in his eyes and I had to maintain that quality to keep him and my mom happy.  What a demand for a little girl.  I had to look, act, and be perfect at all times.  Then, I could have anything I wanted.  I was afraid to screw up, do the wrong thing, or look the wrong way.  I lost confidence, felt unworthy, and my anxiety level was well beyond what I could take.  I had nightmares and fears of not pleasing my parents. So, for example, if I got a B in a class, I was afraid to come home.  There was a lot of pressure on me growing up.

At 18 , I started seeing a therapist for anxiety.  I was getting headaches and cried a lot. I think the stress of trying to be perfect compromised my health.  I was diagnosed with many catch all illnesses like Chronic Fatigue Syndome, Epstein Barr, Anxiety Disorder, Agorophobia and whatever the doctor could think of.  

Catching up to 2004. I was turning the big 50. I woke up with numbness front the top of my thighs to my neck.  By the way, throughout my marriage(24 years at that time), I had long spells of tiredness and pain throughout my legs.  So, after numerous tests given to me by a neurologist, I was diagnosed with Multiple Sclerosis.  This can’t be happening to me!  Not happy!

I was devastated!  It can’t be!  The doctor has to be wrong!

Hello world! My world living with MS and Parkinson’s.

Living with one chronic illness is enough of a challenge. Then, to be diagnosed with a second chronic progressive illness. That’s when fear, depression, and anxiety become the hidden symptoms that I experienced.

I was diagnosed with MS in 2004, one month before my 50th birthday.  Ten years later, I had another birthday present. I was diagnosed with Parkinson’s Disease.

I am blogging about my life with these diseases: my ups and downs, my laughs and cries, my hopes and fears and my struggles I encounter everyday of my life.