Tuesday, October 8, 2013


Our good friend, Carey, over at AccordingtoCarey, invited us to guest post for her October 31-day challenge: Surviving Chronic Illness. It's a privilege to share some hard-earned thoughts on the journey with her readers and with you. Sooner or later, you or someone you know will face an unexpected health crisis - this series could help with the process. Check it out and share, share, share! Beckie 

     If I were to list for you all the people in our life who have faced chronic or life-threatening illness you’d probably start running in the opposite direction. Suffice it to say, we know a few …. including ourselves. The one positive about this is, when meeting people for the first time who are facing a medical diagnosis, our personal story and experience give us some credibility.
     There’s nothing more rewarding than being able to pass along knowledge that might help someone on their journey. Through our blog we have the opportunity to connect with people from around the world. We find ourselves repeatedly talking about certain issues that I refer to as my “soapboxes” ….. one of them being advocacy.

     It’s pretty easy to find yourself overwhelmed in the medical process. There’s not just physical stuff going on, but the emotional side gets kicked around pretty well too. That’s why, as a patient, having an advocate is so very important. NO ONE should EVER be in hospital or attending doctor appts by themselves -- there's just too much room for error in the process ... especially when the patient is struggling physically or mentally, or is in pain. I’d say it’s next to impossible for the patient to advocate for themselves and a second 'ear' is always good when interpreting what the Doctors or other medical professionals might share with you. We often take my sister-in-law along with us to Ken’s neuro appointments. Many times she has been the ‘voice of reason’ for us, both during the appointment by offering pointed questions and later, as we attempted to piece together all the new information that had been offered.
     We live in amazing times and most likely the first thing most of us do when handed a medical diagnosis is to RUN to Google, so it may seem trite to remind you of some basics. But utilizing the ‘basics’ will eventually give you a strong foundation for understanding and analyzing everything that may come your way on this journey.
Join an online support group - these can provide a broad over-view (you will need to use the grocery store method: take what you need and leave the rest)
Join a local support group -- these people will have invaluable information on what type of support is available locally. They’ve ‘been there, done that’
Ask for reading suggestions -- and don’t worry if it all seems like gibberish, it will eventually begin to make sense. It’s a lot like learning a new language.

     The patient in your life gets a lot of attention …. as well they should. But if you find yourself in the position of caretaking or advocating, you can’t forget yourself. There have been plenty of articles documenting stories of caretakers who actually pass before their patient. It’s very easy to focus, focus, focus on taking care of everyone else but you. Guess how I know this?
     I’m still learning to give myself permission to address my physical and emotional needs. My sister has been such a good example to me in this. Her husband has Frontal Temporal Disease and most of their life together, as they knew it, has disintegrated. She has found ways to nurture her heart and her body that allow her to gather her strength. She gets therapeutic massages for stress, she walks to and from work through all four seasons, she bought a kayak and spends quiet, restful moments on the lake, she surrounds herself with people who are encouragers in word and deed, and when she’s having a really hard day she makes Apple Dumplings. She’s practically world-renowned for those things! She takes care of herself, because no one else can.
     I’m learning from her. I also try to remind myself not to hold my breath figuratively. I’m trying not to put ‘life’ on hold as we walk out this process. It’s a really easy thing to do -- put your life on hold. Then you look back and realize you haven’t enjoyed the little, everyday moments that make up a life. I want to fully appreciate those moments -- reading out-loud from my mother-in-law’s journal as we complete yet another holiday round-trip drive, having the patience and time to let my grandkids ‘help’ prepare meals and together, work on a puzzle …. for the 10th time that day , and getting lost in the eyes of our 3-week-old newest grandgirl, knowing therein lies an ocean of love.

Facing down illness is a tough road, full of twists and turns with always challenging and ever changing terrain. The goal is to travel as gracefully as possible. Together, we can help each other do that.

Tuesday, October 1, 2013

Terrance cultivated tomatoes...

Whenever I write and post something that is critical and negative about Parkinson's Disease, I run the risk of sounding like I'm whining.  To the contrary, I don't believe there is anything more significant to a person with this insidious condition than empathy - identifying with someone who is experiencing the same feelings and frustrations. That's why I write...for you who have PD.

For those of you who don't have PD, but are still interested, this is a look "inside the Parkinson's Brain" - figuratively speaking, of course.

Up until two days ago, I had mixed feelings about the speech therapy process.  In my analytical  world, I don't like to be told to do something without knowing WHY I'm doing it.   Initially, I was told to say "aaah" as loud and as long as I could in a mid-range tone.  They were testing my capacity for breathing with my diaphragm.  It also became a benchmark to assess progress or decline over the course of time.  There are some other exercises we do, also, but frankly, I tolerated these in hopes that we would go deeper into understanding the problem and maybe finding acceptable solutions.

A light went on when my therapist answered a question I had asked about why I couldn't read aloud a long sentence...one that any 5th grader could tackle with ease.  In so many words, she said my problem was physical not necessarily mental.  What I  am attempting to do (what I used to do without effort) is to synchronize my tongue, jaw, lips and vocal chords with my lungs and diaphragm until my air supply is used up, take another breath and repeat the process.  "No problem," you say.  Except in the case where none of the above muscles are working properly.  I run out of air after four or five syllables.  This is where I need to focus my attention and practice.  Now I understand WHY I need to practice and WHAT it is I need to practice...synchronizing those muscle groups.

Here's an example:   "Terrance cultivated tomatoes and turnips in his terrace gardens."  When I try to read that at a volume of about 80 dB (so people can hear me), I quickly run out of breath.  I have to break it up into manageable phrases...

Terrance -(breath)- cultivated -(breath)- tomatoes and turnips -(breath)- in his terrace -(breath)- gardens.

Try that for yourself - aloud, breathing  in deeply at each break.  Now, try it without reading words from a page, but rather think a thought, visualize the words - with breath spaces - then say them.  If the person you're addressing, can't hear you, say it again - louder...one sentence at a time.

How did you do?  For a guy like me that is used to doing everything at warp speed, it can become very interesting.  My perception at this moment in time - is that asking me to try harder, is not unlike asking a person with Cerebral Palsy to try harder to sit up straight.

Hopefully, with time and practice, my talking will improve.  Practice, practice, practice.  If you are considering speech therapy:  Don't discount it early on.  Hang in there - find out WHY you need to practice then the WHAT will make sense.