Lately, I have had to face the facts. Parkinson's Disease is progressive. I must also face the fact that this is not always visible to those around me...even to the closest among my loved ones.
Since my diagnosis, I have entrenched myself in the world of PD. I have joined online support groups, managed my own informational site, and follow the most current research available. Through my blog, and my website, Parkinson's - Living UnSHAKEable, I have tried to pass on some of this knowledge, as well as personal experiences.
What I feel that I have neglected to demonstrate, whether in written word, or actions, is that my PD is progressing. I try to humble myself by being strong, and showing only my brave front, but now I need to expose some of the invisible signs that PD has delivered, And, it is not going away any time soon.
One of the areas of my concern, currently, is my ability to organize my thoughts, demonstrate some semblance of short term memory, and basically, socialize in a manner which normally had been my strong suit. Because this struggle is not outwardly evident, my interactions may often appear as distant, strange, a mixed message, or seem that I am disinterested.
This internal battle with my thoughts and expressions become exhausting..physically and mentally. Even while writing this, I fear I am unable to get across , exactly what I struggle through. I will try my best to recreate some of the internal dialogue that I work through just to carry a conversation.
When I am interacting with someone whom I am very comfortable with...usually immediate family, I am struggling to recall words, form them in a cohesive idea, and try to express it verbally. Now, having been a teacher for over 20 years, this has never been a challenge....actually, it use to be a strength.
If at any point during the conversation, I am thrown into a position to quickly respond or answer, my mind completely freezes. I will have to stall, interrupt by saying that I have forgotten what I was going to say, or say what comes to mind, and chance that I will have the opportunity to correct myself at a time when the conversation has either stopped, or changed direction.
And that is what usually happens. I will add my thoughts, finally, after the conversation has long changed topic. Although this leaves me frustrated and embarrassed, I generally can laugh at myself, and allow the other person comfort in doing the same. But I don't miss the fact that what I had just added to the conversation was randomly odd.
Generally, this predicament had occurred when I was trying to follow a conversation in a group, or with two or more participants. Most recently, I have realized that this is occurring more frequently despite the number of people, or the closeness of our bond. Other than my partner, Frank, if I am about to enter a conversation, I panic, and prepare myself for appearing disinterested, or just plain, "ditzy". Does the panic cause this to happen , or does the panic occur because this happens? I'm not really sure. Chicken or egg....????
All I know is that this has become progressively worse. As well, and just to add salt to an open wound, I have noticed that I actually freeze at times, and am unable to speak without stopping, swallowing, and non-chalantly taking a moment to proceed in what I was about to say.
This was first experienced last summer on a 3 day, BFFs, girl's cottage get-away. Now how much more relaxing could that be?? I was joining, or beginning a conversation, and was about to contribute to it by using my son's name...Steven....and I could not get the name out of my mouth. Steven...I tried again, and then again, and finally got over the hump by saying, "my youngest son". That may not appear to be out of place or appear odd in just a familiar group, but with my very best friends, in easy going, intimate discussions, it sounded just plain weird. I had to then break the conversation, and share with them what had just happened.
Just those two examples, and believe me, there are many, ,many more, I have realized that whether it be the strain, the fear, or amount of work it takes, I tend to keep conversations to a minimum/ It is exhausting, and embarrassing. I now much prefer to listen, than participate.
Socializing, even amongst my closest of relations, is such a struggle. I hate phone conversations as it gives me no visual cues with which to prepare myself As a result, I do not own a cell phone, nor do I answer the landline. I leave that to Frank, who will prepare me by letting me know who it is, and that will usually lessen the stress of the moment.
Unfortunately, this has left me knowing that I am distancing myself , socially. I am unable to mingle with the ease I once had, to simply meet, greet and engage in purposeful conversation. My grown sons, who are building exciting lives, are dealing with the fallout, though, I don't think they realize it...yet...or perhaps they will after reading this.
As life goes, I don't see them on a daily basis. When I do, i am so excited to see them, and want to hear about everything going on in their lives, that I fall short in expressing exactly what I am dying to discuss. My mind becomes so jumbled with all the things I want to discuss, that I can't organize the thoughts cohesively, and it comes out in random spurts. I notice the odd glance, or inquisitive look that in my mind appears as "where the heck did that come from?" Or I make a simple joke out of it and allow them to think Mom is tired, or isn't fully listening. In reality, I am checking every thought and idea and word that I am about to spew. I just can't articulate everything i want to say in that one short visit.
Hopefully, I will learn some tricks or ways to manage these challenges. This blog, this laptop, for example, has allowed me the best opportunity to express myself. I can sit and type until I draw a blank, can stare onto the screen until the word or thought comes to me. I can edit, and rearrange my thoughts. I can take my time and revisit what I have expressed until I feel I have articulated it, to the best of my ability.
In Sept., I have been asked to be an administrator of a Virtual Support Group for Young Onset PD'ers, in my region. To do this, I have met with the local Chapter Parkinson's Association Coordinator, via phone and virtually online. Discussing, preparing to run these sessions that will last up to 3 hours, has left me completely wiped out. This is how I came to understand that communicating has become very exhausting.
So, although my PD is progressing physically, by requiring a cane to walk a distance, more "off times" with my medications, more tremoring when under stress, and more prevalent rigidity and other familiar motor symptoms, it is the non-motor symptoms that have begun to take it's toll. It is this struggle to communicate, think, verbalize, socialize, that I am afraid occurs to be as great a challenge as the common physical symptoms.
Those of us with Parkinson's are not disregarding conversations, being unsociable, avoiding communicating, or not wanting to be with you. We are struggling with communicating effectively, to let you know we WANT to socialize, discuss, debate, respond effectively......we just require patience and understanding.
Being human, means being social.....we are human, we want to be social. Just help engage us, and help us accept that we can still participate in your life.....we want to....we are just much slower in the manner with which we are able. As frustrated as you are with us, we are ten times more that frustrated with ourselves.
So, with that being said, I hope I haven't just added to the confusion that I feel within my own head. Non-motor symptoms of Parkinson's Disease are often not discussed, but these can be some of the worst hurdles to confront. We are the same person, just trudging along at a much slower pace. Encourage, be patient and include us....we may be a shell of who we once were, but our hearts and feelings haven't changed.
Communicating is indeed exhausting....fatigue has set in....oh , the fatigue!....well, that is a whole other topic for another day.
