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.

I’m Back!!

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.