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…)
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.
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.