Tag: Chronic illnesses

Friends Come and Friends Go.

Posted on by barbie819 in MS and Parkinson's

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Living with MS and especially Parkinson’s, made me aware that you lose a lot of good friends. I don’t understand why this happens but in some ways I do. Some of my “former good friends” are afraid of saying the wrong things to me so avoiding me is easier. I also think that fear is a big factor. Fear of getting a chronic disease themselves or looking at what happens when you age. When I see these “friends”, they look at me like I am “sick”, instead of the healthy Barbie they use to know. I’m talking about the “fun” Barbie, the “cool” Barbie, the “athletic” Barbie, the Barbie that would be the last one off the dance floor.

Hey guys!! I’m still her! I just have a couple of dopamine cells missing and a couple of lesions on my spine. I get tired more easily some days, but if you tell me you want to have plans with me, I’ll make it happen. Sometimes I look like I’m drunk but that’s my movement disorder kicking in. I might have to hold on to you sometimes but that’s just my balance. I might be too tired to stay out late with you, like I use to, but I still love you. I might not be as fast to get dressed and put on my make up, but when you see me, I will be dressed nicely and always have my make up on! I may forget words or someone’s name, but I’ll come up with the word eventually and I’ll still know who you are! You may see me bob my head or move my body in weird ways, but that’s my movement these days (too many drugs)! It’s probably hard for you to see me this way, but it’s harder for me to have you see me this way! I still am me; some days are good and some days are not so good.

I still love to have fun! I still love to dance, workout, do yoga, go out to dinner. I still love to laugh my ass off and talk about old times. I still like to “play” tennis and golf and shop til I drop! But most important, I still want to hang out with my friends!

I have two chronic illnesses. It’s not fun sometimes and it’s very scary for me. I need my friends. It’s very hard for me to reach out to you for fear of rejection. It’s not easy facing these challenges alone. I’m fighting them as hard as I can! I know it’s very hard to understand what I’m going through. It’s hard for me to!And, even worse, I’m doing it alone. Not to take away from my friends and family that totally support me and have that “unconditional love” for me. I thank god that they are in my life! And I do have a good life besides my challenges. You know that from my previous blogs. I just need you out there to know that “love cures”. And a person, whether or not they are well or sick, wants, needs, and loves unconditionally.

I’m still Barbie! I just have a few chronic illnesses. (more…)

Yoga for MS and Parkinson’s

Posted on by barbie819 in MS and Parkinson's

You  can give in to chronic illnesses or you can fight them!  I have three beautiful children and they give me three reasons to fight.  I am Barbie; I am not MS or Parkinson’s!  I have them, they don’t have me!

When I was diagnosed with MS, I was scared. I was devastated.  I felt my life was over. I cried and cried. But when I finished my crying, I decided to explore different ways to help me cope with this devastating disease.

I decided to search the internet for a Complimentary Alternative Medicine (CAM). Yoga kept popping up. Mmmmm ..  I didn’t practice yoga. Maybe took a class or two on a vacation, but never took yoga classes as a part of my exercise regimen.  I knew there was a yoga studio not far from my house.  My daughter, Marni convinced me to go to a beginner class.  Of course, she had to go with me!  That was the beginning of my yoga addiction. I loved it so much that I became certified as a Yoga Instructor!

I have some videos on YouTube. Yoga by Barbie for MS and Parkinson’s. They are in three parts. I am going to try and insert the link. But if not, you can search YouTube to find the videos.

Hugs,

Barbie

https://barbie819.blog/2016/12/22/httpsm-youtube-comwatchvkofpmcouh7m/

 https://m.youtube.com/watch?v=koFpMCOUH7M

https://youtu.be/koFpMCOUH7M
Hopefully these are correct!

But You Don’t Look Sick!

Posted on by barbie819 in MS and Parkinson's

So I went to play bridge at the Bridge Club yesterday as I do every Monday.  The opponent sits down and says,” You’re sick, aren’t you?”  I thought that was a strange question, but I replied, “I do have some challenges.”  She then says, “You don’t look sick!”

How am I supposed to look? What does “sick look like?”  I am still trying to figure that out.  Having MS for 12 years and Parkinson’s for 2 years(or should  I say “diagnosed”), doesn’t make me look different on the outside.  It’s the inside of my physical body that’s gone haywire!

i think doctors give chronic illnesses a negative overall picture to people who have and don’t have these illnesses. When I was diagnosed with MS and with Parkinson’s, both doctors told me that they had “bad” news for me.  They both said, “you have blah, blah, blah.  I am so sorry.”  It doesn’t matter what the names of the chronic illnesses are; the tone of their voices is not a happy tone!  They are dis-eases and life will not be pleasant from now on!  That’s what I inferred from them.  I am screwed and will have a unhappy life for as long as I live!  Whatever the “formal” names for these chronic illnesses are, negative thought about them were implanted in my brain!

What if the doctors said something like, “I have good news for you”!!   Maybe I would(and others with chronic illnesses) have had positive thoughts and a more positive attitude.  Maybe I wouldn’t feel so alone and depressed.  The fight wouldn’t be as bad as it is for me and others battling chronic illnesses.  I feel it must it must be a conspiracy by the pharmaceutical companies.  The reason being that I was immediately prescribed drugs to treat the symptoms and to prevent new ones.

I think that I probably had some of the symptoms for years before being diagnosed, but because a name of a disease wasn’t given to me, I was okay  I felt some symptoms but never dwelled on them. It’s kind of like the “placebo effect”.  As Wikipedia defines it–“A person given such an ineffectual treatment will often have a perceived or actual improvement to their condition, a phenomenon commonly called the placebo effect or placebo response.”

i don’t know why or how I was the lucky one chosen to have MS or Parkinson’s, but people out there, my life isn’t over!  I still am me!  I still love to look presentable.  I don’t like leaving the house without makeup,  I love pretty clothes!  I love shoes, purses, shopping and getting my hair done twice a week!  I think that I am attractive or so I’m told.  And, I am a very good actress,  meaning even when I don’t feel well, I won’t look it on the outside!

So, even if I’m feeling lousy because one of my many symptoms of my dis-eases presents itself in my physical body; I still smile when someone asks me how I am feeling.   My response tends to be more than not, “I am fine.  How are you feeling?”

I guess people don’t know what to say.  Maybe they think they are are giving me a compliment.  It really doesn’t matter. I think that if you haven’t experienced either of these chronic illnesses, you don’t know how to react to someone who does.

 

 

What happened to “the fun” Barbie?

Posted on by barbie819 in MS and Parkinson's

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.