What it feel like to have 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.

ANXIETY

I think that if I didn’t have anxiety, a lot of my symptoms would disappear. In fact, I know so! When I am anxious, my symptoms of both MS and Parkinson’s exacerbate. My toes get more numb, my balance is off more, and it’s much harder to walk. One of the worse symptoms is my back tightens up to the point of severe stiffness and burning. My dyskinesia also is much more evident. Let’s just put in this way. IT’S NOT FUN! I normally have to go home, if I’m out, and lie on ice or heat. It’s hard to sit for long periods of time because I stiffen up too. It’s like my back is a board. So, anxiety is the pits. Then fear kicks in. Fear of what is to come.

I’m trying everything to relieve my anxiety. I go to psychotherapy, have seen a Naturopath, meditate, workout, do Yoga, did acupuncture, take lots of medication, and have a Parkinsons coach. BUT, I am afraid of the future. I’m afraid of the word “progressive”. What does that mean? My neurologist told me I have a chronic progressive disorder. So, in my head, that’s what my thoughts are. In PD, you loose dopamine. But our bodies make dopamine. Why can’t we make what we loose? I am so frustrated!

I have read books about Parkinson’s Recovery. It is possible, but not probable. There are ways to slow down the progression..

EXERCISE, EXERCISE EXERCISE IS THE KEY! The problem with that is, some days I am so nauseated from my meds or so tired that exercising is the furthest thing from mind. But on those days, I do a little bit of walking and stretching. Parkinson’s is a movement disorder; I have to keep moving!

I have to tell you, when I am happy, with people who accept me unconditionally, my anxiety melts away. I tell one of my best friends, “if I didn’t have anxiety, my life would be a lot better”. She laughs every time I say it! Susie is the best. With her I have no anxiety! So, being with her is just the prescription I need!

1994 My surprise 40th!

Anytime I’m with a good or best friend, miracles happen! Thank you god for giving me those girlfriends!

2016. With Jo!

2019 My 65th birthday!

My anxiety seems to disappear. And, as I have said many times, my family has a similar effect. Especially, my grandson, Shay Madden!Shay relaxing in Gamzey’s bed!

Family at Jessica and Abdo’s wedding! Can you find me?

When I’m not alone and am with my friends and family, life seems much happier for me! Bye bye anxiety!

The Missing Maestro

I read this quote on Facebook and I shared it with my FB friends. It is so relevant to what people with chronic illnesses want to scream out!

You can’t fix me! You can’t take away my pain! But what you can do is stand by my side just in case I want to reach out and touch you, just in case I want to share my day with you, just in case I need your shoulder to cry on.

The most hurtful thing you could do is to ignore me like I don’t exist anymore. I guess that is easier for you. And in some instances I don’t blame you. I can be a real pain in the ass! But then again, I could always be even before the “diagnosis“!

You see, I’m just like you! The only difference is that you have more dopamine then I do. Your neurotransmitters are communicating with your muscles to move like they should and when they should. My brain produces much less dopamine. Therefore, my muscles either don’t move the way they are supposed to or as one of my doctors put it, “Maestro hasn’t shown up for the concert”.https://images.app.goo.gl/F2SsqAKv8mtVLR7LA

Now I totally understand what he meant by this. He was telling me this to fully explain what someone with Parkinson’s might endure.

We will have to replace the missing Maestro with substitute Maestros! These substitutes might be as good or may not. We’ll have to experiment with them. Some are good and some are not. The orchestra might have lots of side effects. Some of the players might get severe nausea or just may go haywire making weird movements with their instruments! The players might might play all different songs at the same time or fall off their chairs. The orchestra might not be balanced or just may stop for no reason. They might see notes that really are not there on the musical sheet but play them anyway. Don’t worry though, researchers are looking for new Maestros all the time! They will try them out on us but they need the money to pay for them. So, until they get the money, we will have to use the substitutes they provide us with. I guess I’m probably afraid that this won’t ever happen. And it is understandable but we are supposed to have faith; one day probably not in my lifetime, the perfect Maestro will be found. This makes me somewhat upset but I’m supposed to be patient. I hope you can understand how I feel. I might lose a lot of concert goers. I mean, who wants to pay good money to listen to a concert with a substitute Maestro? When they find the right one, I’m sure my followers(friends and family) will come back to me as before the “diagnosis”!

When this happens; actually IF this happens, life will be so much better for all of us with PD. Our friends and family that use to come to our concerts will return. BUT, wait a minute! There is something else that can be done! The neurosurgeon can try and drill some holes in our heads and put some electros in there to smooth the music out. That could help temporarily. You know, nothing is forever! It might help with some of the concert players but definitely not all of them. And it probably won’t help with the emotional ones with PD or the ones with lots of anxiety. They just get so depressed about that so they don’t show up to the concert to play. Most of the time, they just stay in bed. No wonder they are so lonely. I mean, we should be positive, don’t you think?? We shouldn’t isolate ourselves. And while at home feeling sorry for ourselves we should practice playing as much as we can. That will help us when they find the perfect Maestro for our orchestra! Even if we are depressed, nervous, and it hurts our fingers when playing our instruments! Remember, there are lots of substitute Maestros out there!

And our relationships will get better as soon as we do! Right now, if we can’t play, they will find out! So stop looking! No good musician wants to play with a musician that doesn’t play their tune!! Again, we are invisible to them and definitely misunderstood.

Acceptance is The Key to my Happiness,

You know, no one escapes disappointments, health issues, or lacking love whether it be a friend, partner, or family member. As humans, we need reassurance, love, and want to be healthy! However, this is not my reality. I believe we all should be and do the last three things I mentioned. But the problem is, that is not my life! I remember doing a seminar on love. This was about 30 years ago. One quote stuck. in my mind. I remember it so clearly. I guess that’s because I take things so personally and want to be loved and accepted just the way I am! The quote went something like this, “don’t waste your time worrying about how you look in a group of people, because they are worrying about the same thing!” If I’m worrying I look good enough, so are they. If I’m worrying I look happy enough, so are they. If I’m worrying if I’m interesting enough, so are they. And the list goes on and on.

You see, being accepted is in my head I think goes back to my childhood. I never felt good enough, never felt pretty enough, and never felt confident enough just to be me. So I acted in a way that would draw people into my world. I had a lot of friends but basically I was alone a lot. Perfection was my goal. Not a good idea. If someone was prettier, smarter, richer or more popular than I felt I was, I tried to be like they were. And most of the time I could accomplish that, but found out that it wasn’t a good idea. Because in the end I lost good friends. I blamed it on my parents. They always called me their perfect child. Unfortunately, that role can never be met. To be perfect for them made me into a person I didn’t like.

However , I could always justify my actions! I told them what they wanted to hear and many times didn’t tell them the truth or the whole story. Perfection costs! And I’m not talking about money.

So, If a person is expected to be perfect, you can imagine what their expectations of others are. And if those expectations don’t come to fruition, that can cause major guilt. We question our confidence, and it makes us feel unloved. And that’s the basic story of ME

I know this might sound a little narcissistic and maybe it is. But, in order for me to survive, I had to live up to my father’s needs and demands for me to be the perfect child in every aspect of life!

Then what happens when you are diagnosed with not one, but two chronic illnesses? What happens when relationships don’t work for out? What happens when many of your friends leave the friendship because you aren’t who you use to be? You cancel plans, you don’t go to celebrations, you are afraid that you won’t feel well enough to have “fun” the way you use to? And what happens when fear, pain, stiffness and symptoms arise that you think make you look drunk. Your balance is off and the things you use to love to do become so hard for you like dancing, play sports, or just walk. Your friends or who you thought were your friends spend less time with you. Parties or occasions that you were always invited to in the past stops. Doesn’t make you feel the best! In fact, you begin to isolate yourself.

Acceptance is the key to my happiness.

However, I have to accept, love, and be kind to myself first! Learning to do this is very hard for me with two chronic illnesses. I don’t look at myself as the same person I was before the diagnosis’s. Therefore, I can understand how my friends look at me in a different way too or so I imagine.

I learned in my meditation group that I need to look inside of myself for self acceptance and self love. I can’t look for unconditional acceptance and love from friends and family. I think that has been my goal as far back as I can remember.

“Why doesn’t he love me? Maybe if I acquiesce to his wants and needs, he will love me the way I need him too.” So, that’s what I did with my relationships. Not a good idea! That did not bring me happiness.

I lost confidence, self love, became needy, and kept searching for love from “all the wrong places”.

Acceptance is the key to my happiness. I have to accept who I am now. I have to accept that I am still me. I’m not Parkinson’s. I’m not MS. I’m Barbara Steinfelder who just happens to have two chronic illnesses. I have to accept that they will be hanging around me for the rest of my life!

I think I’m starting to accept myself just the way I am. I hope you can to.

ACCEPTANCE IS ONE OF MY KEYS TO MY HAPPINESS!

My medicine!!

Feeling Alone

When I think about my life, I try to look at the good times. There were lots of those times and I am grateful for those. However, there were a lot of traumatic times too. Times that I’ve blocked out of my mind, times that I don’t want to remember, times when I was so frightened that I hid in my room and just cried my eyes out.

I remember my father and oldest brother having fist fights. I think that neither my brother or father understood each other. My brother Arnold was “emotionally disturbed”. We call it autism today, a disorder that impairs the ability to communicate and interact with others. They have a lot of fears. One of the biggest fears for Arnold was my father. He adored my mom so when my mom was being verbally abused by my dad, Arnold was start fist fighting with him. It was very scary for me as a little girl watching this. I screamed and asked them to stop. Those nights I used to cr myself to sleep. Nightmares followed.

You see, It was tough growing up as an only girl. I won’t go into the details, but I was expected to be the perfect child. My father asked me to be “perfect” to make my mother happy. And I did anything my father asked me to do. He loved me so much. I was his princess, but this princess came with expectations. It was my job to make him and my mom happy! Not easy for a little girl.

As a little girl growing up, I watched so much abuse and always thought it was my fault. Like the times my dad beat my older brother for things that he should have hugged him for. One time my brother fell down the steps to the basement and my dad reprimanded him for not being more careful. I have to say that I did “love”my dad. But I hated how he erupted so much. He yelled at things that did not warrant this abuse; against my mom and brothers. So I did anything he wanted to escape this terror. It was a very tumultuous childhood. I had bad nightmares and anxiety starting at a very young age. I felt responsible for everyone’s happiness. I think that carried over to my adult life. I was always feeling like I failed; that I wasn’t worthy of love. If I wasn’t perfect, I was a failure. I didn’t feel pretty enough, smart enough, or perfect enough. I never felt safe growing up so I did things that maybe other kids wouldn’t do. I yearned to be loved like my dad loved me. I always felt alone because no man could compete. In fact, my insecurity drove them away. I needed so much attention, so much affection, and so much acknowledgement that I destroyed most of my relationships with men.

And now fighting two illnesses, I feel alone. I married the greatest man and I screwed up. I expected him to be like my dad. So he filled that job and I complained to him that he was treating me like a child. Isn’t a dad supposed to to that? Yes, but not a husband. He took care of me. I didn’t like that either. Then I complained that he didn’t love me the way I was loved by my daddy! I know he tried to love me the way I wanted him to. The problem was and still is that I only know one kind of love and that’s not what’s good for two people spending their lives together r as husband and wife. I needed to be Barbara, not little Barbie. Most of my relationships with men, I screwed up. I feel so guilty and embarrassed And I’m finally realizing that nobody is perfect and no relationship is perfect. And it’s okay. I was taught at an early age to be perfect and make everyone happy. That’s a tall order. It kills self esteem, self worth, and self love.

I think all my anxiety and worry that I needed to be perfect contributed to my illnesses. I also feel like lost a lot of people that I’ve loved. This is a daily struggle for me. I want to please others so much that I forget about me. I’m afraid to start certain tasks or jobs because I’m afraid that I won’t be able to be perfect at whatever the task is. My anxiety about it is paralyzing. So I lose my confidence and I lose my relationships.

Feeling alone. I do have great friends and family but with MS and Parkinson’s I feel so broken. I feel like I let everyone down. They remember me when I was fun and healthy. But even then, I was feeling alone. I just couldn’t feel pretty enough, smart enough, or perfect enough.

Feeling alone . Parkinson’s is a lonely disease. So now I am alone in my body that doesn’t work like it should. Now I feel alone in my mind when I can’t remember or think of words that I drop. Now I feel alone when my feet are numb and my toes curl in. Now I feel alone when my body turns so rigid that I can’t move, can’t walk, and can’t explain to anyone what pain my body is going through.

Feeling alone. I yearn for love, for touch, for hugs, for kisses. I yearn for a man to love me even if I’m just learning to love myself. Feeling alone and fearing I will always be. Loneliness is a scary feeling. I might have these crazy dis-eases, but I’m still me. I’m a fighter. I have to be. By the way, I love all my friends and family. I love being with you. When we have plans, I cancel sometimes because this body of mine is not cooperating. Then the anxiety and fear take over and again I am alone.

I so appreciate your love and understanding. I know it’s hard for you to see me this way, but I will tell you one thing. Barbie Steinfelder will always have makeup on and look the best

I made 65!!

I can. I am not giving in to these dis-eases . I will dance to the music even when it stops playing. I will work out my mind and body the most that I can. I will laugh , I will smile, I will cry, and I will love. I’m not feeling alone now. I love writing. It may not be perfect, but what is?

Friends Come and Friends Go.

l

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…)