Tag: MS

What it feel like to have MS and Parkinson’s. 

Posted on by barbie819 in MS and Parkinson's

A friend of mine said that having Parkinson’s is a struggle everyday. He said that for him it was like constantly fighting your way out of a paper bag.  I don’t quite understand the analogy, but I’ll put it this way.  Everyday when I wake up, I wonder if my symptoms will show up and terrorize my mind and body or will I have a somewhat easier day what do I mean by that?

1.  Will I be able to walk without a struggle?  Will I have numb feet, toes that curl under so much that it’s painful to walk, heavy legs that they fell like they are in cement blocks and/or slowness when I walk?
2. Will I lose my balance when I walk up or down steps in front of others?  Or will I walk so unsteady that I look like I’ve been drinking?  I’ve walked into walls; I’ve walked into people, even my best friend!                                                     3. Will my pills where off before I get home and prevent me from getting to my apartment without help from a friend?     4.  Will my anxiety and depression be so bad that I can’t stop crying and just want to stay in bed?friendsbecauseyou’re..havechronicdon’tillness.It’sdegradinghumiliating. pain when.toyourselfablebecausefeelingunderstandfriends and family think it’s easier for them not to hear your hurts and pain? 11.Will you just want to scream at the top of your lungs that you are the same Barbie you use to be. You just have some challenges to deal different for each person that has it. Their symptoms can be completely opposite. But we still are the same person we always were.

Susie and me at my surprise
40th birthday! And right below is 65th birthday. I’m the same person!

Vegas. Age 50. The days when I was so much fun!

Not bad for 25 years difference.

My girlfriends signed me up for The Best body on the beach contest in Ocean City against 18 yr olds in the first picture.Not happy. A bottle of wine helped! Age 40. And the two below Age 64. One in Myrtle Beach and below that I’m with my Sis and my precious niece!

Those are 24 years difference. I’m still the same fun person!

Chronic illnesses are so hard to explain to others the way you feel but I hope you understand a little bit better reading this blog.

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…)

Changes

Posted on by barbie819 in Accepting challenges, Chronic illnesses, MS and Parkinson's, Yoga

As I sit here in my bed, I reflect back over the past 13 years. Why 13 years? The changes to my health drastically changed the summer of 2004. I went from a healthy upbeat happy with life person to a person with a chronic illness, MS. That diagnosis was devastating to me, but I found a way to overcome most this catastrophic feeling with the support of my family, friends and the discovery of yoga. I still was very active and even became a certified yoga instructor. Even giving myself a shot everyday for the treatment of MS wasn’t the worse thing in the world. It wasn’t pleasant but I could deal with it.  Teaching yoga helped me heal my mind and body.  It was like I had no dis-ease called MS.  I was able to do the things I loved to do!  I was in remission.  I loved teaching yoga  it became my passion  I taught classes and gave private lessons.

However, something strange was happening to me. I was walking slower and slower.  It was harder and harder to lift my feet off the ground.  Life was changing, again! I also noticed that it was harder to keep my balance while teaching yoga. I was not a happy camper. I was perplexed! Maybe I was having a MS flare up!

I made an appointment with my neurologist. Unfortunately, it was related to MS. It was related to an illness that I wouldn’t have ever dreamed I would have! He said I had MS with a Parkinsons symptom. I was shocked! Couldn’t be.

To be continued……

Yoga
has One of my students taking a picture of me!

I’m Back!!

Posted on by barbie819 in Accepting challenges, MS and Parkinson's

I’m sitting in my bed looking back over this past year and smiling. Why am I smiling? I’m smiling at all the wonderful things that have happened and how I stepped up to the plate! First of all, my beautiful daughter, Marni got married to the man of her dreams, Shawn on a beautiful night on the beach with a beautiful sunset. I never thought I would be able to last the entire weekend but somehow I did. With a little extra medication and lots of meditation I came through with flying colors! “Goodbye Parkinson’s, you couldn’t take me over on my daughter’s special weekend”!

That’s me on the left. I left Parkinson’s back in Baltimore! Isn’t she beautiful? I could never let my Marni down! I must say, the weekend took a toll on me, however it was worth it!

Six weeks later, Marni informed me that she was pregnant! I am going to be a grandma! That brings a lot of anxiety and fear for me. Don’t get me wrong, I am ecstatic about the good news. I’m just so afraid that because of PD, I won’t be able to help and take care of my grandchild. By the way, she is having a boy! So, right now, I live in the moment. I’m helping her decorate the nursery and giving her a baby shower.

I think I finally am coming to accept the fact that I have my neurological challenges. Accepting this is helping me live a happier life. With this, I am reaching out to different alternative ways of helping my challenges. I now am working with a Naturopath. She is helping me with diet and supplements. I have changed my diet to gluten-free and dairy free. This diet has made me feel better with my tummy problems. I also went to physical therapy for balance. That gave me more confidence in walking and dancing! I still exercise and do yoga at least 4 to 5 times a week. I’m really proud of myself for doing something I thought I would never do again. I traveled alone!!!! I went to New York to see a show with my son on the train to and from Baltimore. I walked the streets of NY five miles. Wow! What an accomplishment! Walked to the show(which was great) and to dinner. Just did it! My son Justin is a good cheerleader to me! I know this sounds easy, but for someone with PD, it’s a huge feat!

I’ve also been going to other places alone. I’ve walked to different bars and restaurants by myself to eat dinner or listen to music. I even have been dancing at my favorite live music bar, The Cats Eye in Fells Point. I’m doing better with my new realization and confidence! I think my Parkinson’s coach, Robert Rogers has helped me so much. He has written a book about Parkinson’s Recovery and believes we can stop or lessen the progression of the disease. He has many recommendations to help me with healing my anxiety as well as slowing up my progression. He believes in using positive thinking to replace thoughts of negativity. Parkinson’s is just a name. I don’t have to be that name. I am Barbie with some neurological challenges. I’m working to lessen those challenges. More about that on my next blog.

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. 

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

Posted on by barbie819 in 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.