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.
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? friends because you’re . . have chronic don’t illness . It’s degrading humiliating. pain when . to yourself able because feeling understand friends 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.
Not bad for 25 years difference.
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.
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!
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 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?
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…)
Unexplainable things happen in the world of Parkinson’s. You can be having a great day and then the Parkinson’s monster hits your body without any warnings. And, if you’re with a person that doesn’t have a chronic illness, the comments don’t help. “You were just okay!” Or, “I don’t understand how one minute you feel fine, and then you are so sick. That doesn’t make sense to me.” Well, sista, I wish I could give you an answer, but I can’t. I don’t know myself! It just happens. I guess it’s triggered by something in my body. Then it goes to my gibberish non-stop thinking mind and won’t leave. The trigger triggers something else and here comes the anxiety monster, a non-motor symptom of Parkinson’s. The anxiety exacerbates my primary motor symptoms of PD and then the anxiety gets worse and so on and so on…
This scenario happened last Friday. I got up around 8 AM and followed my normal routine. I took my pills, rested for awhile, had coffee with my Lara bar, did a meditation and some yoga and was ready for my day to start. My sister in law was coming over to organize my coat closet and washer/dryer area. I love when she does this. I’m a gatherer and not a thrower away type of person. This is her forte and part time business.
I have to say, I wasn’t feeling my best, but not my worst! Something was going on with my body, but I just couldn’t pinpoint it. I was so busy with her that for awhile I didn’t think about it. I was so happy to have her there that my crazy gibberish mind took a break. However, in the back of my mind was a lot of anxiety about a trip I was supposed to take the next morning. I’ll tell you about that later. I don’t about anyone else with PD, but just the thought of packing and flying causes me anxiety. Remember, anxiety is a major non- motor symptom for many of us that have Parkinson’s.
Getting back to that day. The plan was that she and I were going to watch my grandson at her daughter’s place while her daughter and my daughter went to a yoga class. Then we all were going to eat dinner at my daughter’s house. The next morning, I was supposed to go with my daughter and grandson to upstate NY to celebrate her mother in law’s birthday. I was meeting her there, so I finished up my packing my carry on(anxiety) and got everything together(anxiety) and walked out of my apartment. I was carrying a lot of bags so as I left and locked the door, my pills that were in my backpack in the front pouch(that I forgot to zipper) dropped and went all over the hallway of the eighth floor(anxiety)! Seven days of pills; all different shapes and sizes. Not happy! I put everything down, went back into my apartment, got a plastic baggie, got all the pills up(too embarrassed to say how many), locked the door and proceeded to go to my car. I finally got everything in the car, took a lot of deep breaths and I was on my way. I won’t go into the logistics, but it took a 15 minute drive and turned it into an hour drive(more anxiety)! I could feel my legs getting weak and rigidity creeping up my back. A headache turned up too! By the time I got to my niece’s place, the PD monster had invaded my body! She came down to get me and help me. I could barely walk, my back was killing me, and I felt terrible. Shay, my grandson, always made me feel better so I thought when I got into her apartment, the monster would leave. Shay was so excited to see me. He came right to me with his precious smile! This time the monster was selfish and invaded even more. I need someone to kill my PD monster! I felt so bad that I couldn’t even pick him up. I tried to work through the symptoms but “not happening”. Remember, I was going away the next morning. My sister in law was in disbelief! ” You were okay before!” You never know when Barbie’sParkinson’s monster is going to visit! I don’t blame her for saying that to me. I think she just didn’t understand. And guess what? Sometimes either do I.
Anxiety and stress are definitely the demons that contribute to my symptoms of Parkinson’s. I think not being able to do the things I used to do brings me a lot of anxiety. For example, when I can’t do the yoga poses now that came so easily before PD, I get very frustrated and emotional. Everything just seems to get harder and harder. I yearn to be the “old Barbie” who the last person to leave the dance floor! The Barbie with the high heels! Barbie who taught Yoga and taught the poses that I can’t do now. My balance is affected as well as my confidence!!!!
This was before PD. Now I fall over!!!
I get so stressed and embarrassed in Yoga Class, but, as I’ve said many times, I’m not giving in to this dis-ease! And I am still me! I’m trying to accept and embrace these changes!!
I AM STILL ME! I just have some extra challenges to deal with!! Accept and love who I am and embrace the challenges that have become a part of my life!
Having MS and Parkinson’s is very hard to explain to healthy people when you “look good”. Most people think that either you really don’t have these illnesses that you say you do, or you have it very mild, whatever the invisible illness is. When and if I go out, I rarely leave my apartment without makeup, my hair looking good and dressed neatly with nice clothes. Even when I just go over to see my grandson. It makes me feel better to look at myself in the mirror before I leave my apartment with a stamp of my own approval. I think that I’m like that for two reasons. I feel better when I’m put together and it makes me feel stronger than the illnesses that are ravaging my body. I watched my Dad put himself in a wheelchair not long after he was diagnosed with Parkinson’s .He gave into his illness and became a sick person. It wasn’t fun watching him wither away from my tall handsome strong dad to an old man who never tried to fight this horrific dis-ease. That was my dad in his 20’s. Love this picture! ❤️❤️❤️❤️. I made a promise to my three beautiful children that I will do anyway not to give in to these illnesses. I work on being a healthy person that has two chronic illnesses rather than a sick person with them!
Here I am on the left with my two good friends that I met to have lunch with this past Monday. If you were walking down the street and saw us, you probably wouldn’t think that all three of us have a chronic illness. That’s why invisible chronic diseases are hard to explain to healthy people. Our outside body looks well, but inside we are ill. All three of us have Parkinson’s and each of us have totally different symptoms. PD is a movement disorder that affects each person differently. We each take our own prescribed medications for the symptoms that we are trying to manage.
Remember, chronic means there is no cure. So, depending on your symptoms, you manage the illness with drugs, supplements, exercise, and any other alternative therapies that will comfort and ease your suffering. I’ll talk about those in another blog.
Lately, my symptoms seem to get worse later in the day, so when my friends see me, they are seeing the stronger Barbie. When my meds wear off sometimes too soon, they see some suffering. I am much slower walking and very stiff. Some friends want to help me which is very kind, but when I get into the car or in my apartment, I sob. I cry because I’m not the old Barbie that was athletic and strong and fun! I get frustrated, embarrassed, anxious, and ashamed. I become isolated sometimes because I feel like a burden to my friends and family. I’ve lost a lot of friends and it hurts. I’m not as social as I use to be because I can’t do the things I use to to: dance, play tennis, golf, balance poses in yoga, and walk as far as I use to. It’s very hard to go to parties because I get so rigid to the point where I have to leave early. I use to be the last one to leave a dance club. It makes me so sad.
Then, there are other times when I feel great and I can do or attempt to do those activities. It’s crazy not to be in control of your body’s movements. When I’m feeling good, nothing stops me! I even danced at my niece’s wedding for four straight hours with 3 inch heels! Yay! The old Barbie comes out once in a while. Parkinson’s is a very unpredictable illness. This is my niece Jessica. She was the beautiful bride. I rise to the occasion when I can connect my mind to my body in a positive way. Nobody could believe that I had any dis-eases! And when I babysit or just see my grandson, Shay, I seem to forget about them too!When I see him, his smile just brightens up my entire being. No MS or PD then! I can’t get enough of him. Sometimes I tell my daughter, Marni that I need a dose of Shay. He is my medicine!
So now I’ll finish my blog on Having Invisible Illnesses. It’s made me more aware that we don’t know who is suffering on the inside when people “look good” on the outside. You never know what’s going on inside. I’ve learned to be less judgmental of myself and others. I’ve also have learned that when you have no control of what you get in life, fear can take a hold of you in a way that changes your life. I have to learn to accept these illnesses, love myself and not to be so hard on myself. After all, when I leave my apartment, I look in the mirror and see what everyone else sees that day! I “look good”! I may not feel great, but I have the Invisible Illnesses! Only I know!
When you’re a grandma, life changes in many ways. At least it did for me! All my friends told me about the joy a grandchild brings, and they were right! Even in my darkest moments, I look at Shay’s(my grandson) picture and a smile comes to my face. I have more energy, more hope, and more love! Unconditional love from this little bundle of joy! And I know he knows my voice! When I am with him, he calms me and I calm him. I can’t stop looking at this miracle of life!He brightens my life!
Why am I talking about him right now? Because I am babysitting for the first time! Alone with my grandson for the first time! Parkinson’s and MS and all! Doesn’t stop Gamzy! (That’s my name for grandma). I love to sing to him and tell him how much I love him! And you know what is the best? My daughter Marni and son-in-law Shawn totally trust me alone with him. Even with my neurological challenges! They know if I didn’t feel comfortable doing it, I would say so! But I do! Shay gives me strength! I feel his positive energy which brings joy to my heart! He knows he can count on Gamzy’s love!
To me, he is perfect! I know every grandma says this, but he is really perfect! From his cute little toes to his precious little hands to his adorable little face!
So, I am in love with this new little man! The loneliness I feel is finally starting to fade away. Shay is a miracle.
Having MS and Parkinson’s when you live alone can be very challenging. The past 6 months, this has been my life. I’m not use to being alone(without a man), and it poses a lot of upsets for me. I love to love and I love to be loved. It makes me feel safe, so me, without a significant other gets my mind thinking crazy thoughts. Some of the thoughts are, “what is wrong with me?”, “I’m not pretty enough.”, Why do I screw up so much?, or the biggy is “Nobody wants to be with me because of my dis-eases!”
Hugging is essential to my well-being. It contributes to my health, my self esteem, and my anxiety. I’m not getting many hugs these days so I go back to the negative thoughts. That doesn’t contribute to my well-being! So, you can imagine how I feel when I am alone. Anxiety creeps in and tears flow. I think because I’ve always been in relationships, I’ve neglected myself to the point of dependency. Not a good thing! And, Saturday nights when I’m alone is very hard for me. Thank god I have my daughter! I’m not saying my sons aren’t there for me, but my go to person is my daughter, Marni! I adore her husband Shawn, so he has to put up with me too!
They are the best! I’m always welcome in their home and now that she’s pregnant, I will be there even more! I can’t wait for my first grandchild! That does put a smile on my face!
Anyway, getting back to my crazy thoughts. How do I not believe that they are true. I’m always fearful of the future and I always look at my past saying, “if only I had said this or if only I did this, things would be better.” I’m learning through a lot of reading, research, therapy, and my Parkinson’s Recovery coach about “mindfulness.”
Mindfulness as John Kavat-Zinn puts it, “mindfulness is awareness, cultivated by paying attention in a sustained and particular way: on purpose, in the present moment, and non-judgmentally. It is one of the many forms of meditation….” “ Ultimately, I see mindfulness as a love affair—with life, with reality and imagination, with the beauty of your own being, with your heart and body and mind, and with the world.”
So, in essence, through daily meditation practice, we can live in the moment, not the past or the future. It’s a learning practice for me, but when I meditate it calms down my mind and lessens my anxiety. That is very good for healing, my general well-being, and brings me a sense of peace and happiness. The most important thing meditation does for me is tapping into my inner self. That helps and empowers me when I am alone.
Parkinson’s Disease can be a very lonely disease. When you are diagnosed with it, the doctor tells you that it’s progressive, chronic, and that they are sorry. I know a lot of diseases are depressing, however, PD could be considered to be a slow death sentence. You can live a long time with PD and you can also live with painful symptoms and side effects from drugs needed for the disease. For me, the drugs took a toll on my tummy. I was debilitated to the point of ending up in an emergency room. Then I have dyskinesia, a side effect of the main drug carbidopa-levodopa, which is very necessary for movement; any movement. When you have PD, you lose dopamine a chemical housed in a part of the brain called the Substantia Nigra. The dopamine cells are neurotransmitters that help control movement and coordination. So, we have symptoms of a movement disorder. Each person with PD has their own set of symptoms.
It’s not only manifested by tremors, but a person could have slowness or bradykinsia which is slowness. You could have rigidity which for me is very painful. I have it in my back and thighs. And, you could have balance problems. Those are the main four symptoms.
Then, there are others symptoms. These are freezing and I don’t mean cold! It’s getting stuck while walking. Not fun! Your arm doesn’t swing as much or at all when walking. You can have a soft, low voice, problems with swallowing, blinking, trouble sleeping, changes in your speech, handwriting, and taste or smell. You can have dizziness, difficulty with memory and concentration, vivid dreams and/or nightmares, and impulse control. There are other symptoms that I haven’t mentioned, but I am getting depressed listing them. Oh, yeah, that’s another symptom; depression. And anxiety comes along with the depression. Sounds like a blast, doesn’t it?
Then you are ridden with fear. I wonder why!
I know all this sounds like people with PD were dealt a bad hand. Maybe we were, but we also have a choice. We can give into it or we can fight this demon. I choose to fight it! I try to do anything and everything to help slow the progression. Of course I have bad days, doesn’t everybody? You can have Parkinson’s and live a long happy life. Some of the things that I do is do some kind of exercise every day. This might be Yoga, walking, boxing, some form of cardio and using weights. I also do some form of meditation and plan an activity every day. I have a good support system. That’s important! My family and friends are available to me most of the time. My daughter, Marni, is my best friend who is so understanding and knows the right things to say and support me. My sons, Justin and Jordan, are available to talk or cry to most of the time. They always have good advice! My friends are always understanding and available. If not one, I can reach out to another!
I also play Bridge to help my memory and concentration. I make sure I have some sort of plan or project on most days. Nights can get lonely but I have my dog, Yogie. She is so cute. She is a pain to walk but she gets me out of the apartment!! The only problem with her is she can only be my date for dinner when it is warm outside. She can’t go inside restaurants! But summertime, we always go to dinner together!
I’m getting tired. It’s been a long day. I’ll be back soon😍
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……
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.
I was always a very active person. I was either working out, playing tennis or golf, walking long distances and dancing. I loved to dance! Music just made me move and groove! Oh, I forgot to mention racquetball and skiing. I was always in pretty good shape. And you know what??? I took all these activities for granted. What I mean is I never in my wildest dreams would ever think I would not be able to do these activities due to a chronic illness. One day my muscles are strong and the next day they I get stuck.
Let me explain further. I was always the last one on the dance floor at any party or event that I attended. Actually, the first on; last off!! My feet hurt at the end of the night but that’s quite normal. I always made it part of my weekends to go somewhere that had dance music(or at least most weekends). Even having MS, I was able to dance.
However, about three years ago, that changed. I went to a wedding with my boyfriend Bob. We were standing awhile having hors derves and drinks and I started to feel the need to sit down. I didn’t think a thing of it. Sometimes, my legs got a little tired in high heels. I just thought it was MS which always goes away. It came time to go into the ballroom for the reception, dinner and dancing(my favorite part)!
I danced with Bob for a couple of dances; no problem. Then a gentleman at the table asked me to dance. I started to dance, but halfway through the dance, my feet stopped. What was happening? It felt as though they were in two blocks of concrete. I was mortified! Me not dance??? I called my boyfriend over to help me to my seat. I wasn’t happy, but I thought it was probably just an MS flair up. I tried to walk…….Not happening! So, Bob got the car, came back in and carried me to the car. How embarrassing! He took me home and I planned to call my doctor on Monday morning .
I called my Neurologist Monday at 9 A.M. and he said to come in later that day. That was October 2014. The diagnosis he eventually gave me was MS with Parkinson’s symptom. That did not sound good to me. He prescribed to me medication called carbidopa-levodopa. That sounded familiar to me. I think my Dad took that. That was not a good sign! Eventually, he referred me to a Parkinson’s Disease Neurologist. And you know the outcome…… Now 2 dis-eases…..MS and PD!!
Right now I am on the bike in the gym of my apartment building. It is so important to exercise daily when you have a movement disorder! I find that the days I don’t work out, I have more anxiety and my legs get weaker sooner in the day. So, working out for me is essential. Every other day I do yoga. The days I don’t do yoga, I do cardio( a walking class or a cardio machine).
I also stretch out before each exercise. I find my neck and back very sore if I don’t do my stretches. Oh, I forgot to blog that I had an MRI on my back. Guess what!? I have spinal stenosis and arthritis to add to my list. There are days that I am literally debilitated because my back hurts so bad!!
Therefore, I am gettting an epidural tomorrow in my back to relieve my pain. 🙏🏻🙏🏻 I am praying for relief. I can’t sleep, can’t sit for a long period of time, and walking is a problem. Pray for me! My girlfriend is taking me because they don’t what me to drive. Thank god for girlfriends! I’ll go into that at another time.
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.
Hopefully these are correct!
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.
It’s been 12 years since my diagnosis of MS and 2and 1/2 years for PD. How exciting! I get to have 2 chronic illnesses! The problem with having these illnesses is the fear of the future. So I spend my waking hours worrying about what’s going to happen. So far, I’ve lived a pretty normal life. Thank god , I have mild cases. I mean, if you saw me, you would never think I had any illnesses.
I’m 61 years old and have three grown children. I’ve been separated from my husband Barry for almost 9 years. We are good friends. I had a boyfriend for 8 years. Bob was the greatest, however, things didn’t work out. I miss him! I’ll talk about that another time. I take lot of pills everyday. Not fun! The real problem with me is my anxiety and depression. So we are trying a new prescription. Oh no! More side effects! I just want to wake up with a sense of joy and peace. My psychiatrist says that I have to “own” the PD. I think I haven’t done that yet. That’s what’s causing my anxiety. So this is the first day I am going to try to own my PD! No wonder I’ve had so much fear. I don’t have to prove to anybody that I don’t have these illnesses.
I have to say….. Today I woke up without that nervous feeling in my belly! Yay! I took my morning pills, drank my coffee, paid some bills, and now getting ready to work out.
Be back later……
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…..
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.
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.