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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Tag: caregiving

Guest Blog - Parkinson's: The Bigger Picture

Sara Ochs

"Sara! Come sit down with me and listen to this song." Youtube is calling again and with a sigh, I try to find an excuse to get to the kitchen and help my mom with the dishes or take the dog out for yet another potty break. You see, my dad sits comfortably in his La-z-boy recliner for the majority of the day (which is hours on end), watching the endless classic rock videos taking him back to the normal life he once experienced and enjoyed...the life before Parkinson's set it.

All those around him are searching diligently to find some purpose of life for him as he slips into an isolated "coma" of the mind. My father is currently in stage 4 of the disease. Lucky for him, his grandchildren keep him on his toes with the occasional, "Grandpa, catch!", as a workout ball comes flying at him full force. Or, the newest fuzzy addition to the family jumps up on him licking his beard uncontrollably, scampering for all those yummy scraps from the previous meal. He definitely gets his fair share of attention whether he likes it or not!

By far, I have the most caring mother a person could ask for. She is selfless  in every way towards my father. I mean, who gets a whole bowl of seasonal fruit, scrambled eggs and homemade whole wheat bread for breakfast everyday! She cares for his every need and takes on the burden of a life that was handed to her unexpectedly. We all make plans for the future and have goals we wish to accomplish. My parents longed to serve a mission for our church and travel the world together but the cards just didn't deal that hand.

The road has been a long, burdensome one. My parents have gone through the headache of 5 different neurologist who all think he needs a different medication, all with different effects that go along with them from horrible tremors to hallucinations. You have non-stop physical therapy, frequent dentist appointments because eating and brushing become very difficult, applications for breathing treatments, in-house care and the list goes on. Bottom line, those who are in this boat know that the storm is tremendous!

Now what?... Well, we all have that gift of agency. We get to choose happiness or sorrow. We can choose to mope around all day feeling sorry for ourselves or do something about it! And that is just what our family chose, to do something about it! We all decided to have an outing, at least once a month, to take my father out of his comfort zone into the great outdoors. Now, he does get outside occasionally but this is an outing that would involve a longer period of time with much more activity than normal.

So, off we go! This is where the story gets interesting. Every drug that has been prescribed to my dear old dad cannot give him the joy and stimulation that the outdoors provides. Just this last weekend we spend the day in a regional park, listening to the birds sing, watching the squirrels chase each other and laughed as we raced around in a 4-seater pedal bike. My dad had the chance to laugh, heighten his senses and experience a piece of his life before it all changed. I have to say that the worst thing for a patient with Parkinson's is for them to sit around watching TV or stay inactive. Their speech slows down, mobility is more crippling, overall they become completely immobile. We will all be making a better effort to improve his quality of life through the God given beauties of the Earth.

I think everyone would agree that the quality of life is more important than life itself. As loved ones and family, we choose quality of life for my father. As we accept the change Parkinson's has brought into our lives, we can now focus on those things we CAN change to make the quality of life the best that is possibly can be. That's the bigger picture!

Thank you, Sara, for sharing your story with us! 

Breathing, Eating, and a little Good News

Terri Reinhart

This has been a week full of good news (mostly) and small victories. It's been nice, especially since last week was a little too eventful and challenging.

Last week:

I woke up early last Thursday, picked Dad up and took him to his Dr's appt to check his ears, then took him home, rushed home myself, fixed myself a peanut butter and honey sandwich and proceeded to eat it quickly so I could get to the school in time to pick up our grandson. Chris would have willingly done this errand, but he was on strict NO DRIVING orders while we waited for his pharmacy to screw up his seizure meds prescription one more time.

I choked on the peanut butter. Really choked. I mean really really — can’t breathe gesturing to my husband and daughter to call 911 and my husband doing the Heimlich maneuver on me while shouting at our daughter – kind of choking. Our daughter called 911, but even I could hear the phone just ringing and ringing. Fortunately, the Heimlich worked (so far*, thankfully.. and obviously, it always has) and, as no one had picked up the call yet, she just hung up.

This meant my husband had to explain everything to the nice person who called us from the police station and we all had to explain to the two nice policemen who came to the house and quizzed us and obviously had expected to find domestic abuse going on. Fortunately we got all that out of the way and I still had time to go get our grandson.

THIS WEEK!

Something is shifting with Dad in the ear department because he can hear better than he has for a long time. I got Mom’s computer to connect to the Internet and figured out why it hadn’t been connecting, then helped her find an old friend. Then checked my email and found a message from our Medicaid consultant with the word HALLELUJAH! in the subject line. Mom and Dad are back on Medicaid as of February 1st! 

And I got a referral for a swallow study and therapy!

Okay, while this doesn’t sound like fun, and sitting together watching a video of “Breathing and Swallowing in Parkinson’s Disease”  (starring Roxann Diez-Gross, PhD, SLP-CCC) isn’t the most romantic way to spend an evening, I realize it’s all good for our relationship. As lovely as it is to have my husband come up behind me and throw his arms around me, it’s much nicer when he isn’t doing the Heimlich maneuver and I’m not choking and spewing bits of bread and peanut butter across the room.

Swallowing issues with Parkinson's and Dystonia are serious. If you have any of these symptoms, check in with your doc:

  • Chronic coughing, especially during or after eating
  • Increase in phlegm
  • Food collecting around gum line
  • Feeling like your food is getting stuck in your throat
  • Having a lot of heartburn
  • Sore throat/hoarseness 
  • Frequent choking

Make sure your family learns how to do the Heimlich maneuver and you know how to do this on yourself. Talk with your family or close friends and go over the drill. If you choke, make sure you or someone else calls 911. Even if you can't speak, they'll know something is wrong and will send someone to check up on you. Don't hang up.

Watch the video, too. Dr. Diez-Gross has some wonderful information here and the tips she gives really, really help.

 

*this is the 6th time for me

 

Quiet Heroes

Terri Reinhart

“People always ask me where I'm from,” he announced. “I tell them I'm from outer Mongolia, but actually I'm from Minnesota.”

Chris and I were out for a walk one day. Okay, Chris was walking and I was on my scooter. It was the scooter that made the man pull up next to us on his bicycle and chat for awhile. He had two brothers, he told us, both with Parkinson's disease, and they were living with him. He was wondering if either of his brothers might be able to use a scooter.

When he found out I also had Parkinson's, he began asking me all sorts of questions and we compared medications, dosages, symptoms, side effects, and more. We learned we have the same neurologist. He was dealing with much more than I have as both of his brothers were at the advanced stage of the disease. They had feeding tubes. Sometimes they had hallucinations. I got the feeling his daily bicycle ride was how he kept sane.

Over the next weeks, we saw him now and then. He always stopped to chat. We never even exchanged names. I thought about him a lot. I'm not sure how old he is, but my guess would be around 70. Being the sole caregiver to two people with advanced Parkinson's couldn't be easy, even if they were his brothers. 

As we chatted, we learned a little more about him. His accent was intriguing, which is when he told us he was from Minnesota. “We grew up on a farm. Our family is Norwegian. That's why I talk like this.”  We also learned that one of his brothers had been married; he and his other brother were bachelors.

On the way home, Chris looked thoughtful. Finally, he said, “They really exist. I thought it was just a myth.”

“What?”

“Norwegian bachelor farmers. I thought they were just a Garrison Keillor myth, but they really do exist. We've met a REAL Norwegian bachelor farmer!”

(Cue the Powdermilk Biscuit song)

We didn't see him for awhile and wondered if he was okay. Then, a couple of days ago, he was out riding his bike again. He told us he'd had back surgery and then one of his brothers had passed away. He's still taking care of his other brother. The surgery was obviously successful. He didn't take much time to visit before he was off riding again.

It's always good to see our Norwegian bachelor farmer. He's one of the many quiet caregiver heroes who makes such a difference in the lives of people with Parkinson's disease.  It's a privilege to know him.