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.
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.