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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: choking

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

 

Pray for me? Let me think about it.

Terri Reinhart

I'm not embarrassed by my Parkinson's. I don't want sympathy because of it. I don't generally say much about it, but when an old classmate of mine was taken aback after I told her I was retired, I was suddenly self conscious. Not wanting her to think I had retired because I didn't want to work, I told her it wasn't my choice, I had left teaching after I was diagnosed with Parkinson's disease. 

She looked at me earnestly, put her hand on my arm, and said she was sorry. I was confused at first. Sorry I was retired? Oh. That's right. I have Parkinson's disease. She asked if she could pray for me. 

It was my turn to be taken aback. Not that I have anything against prayer. There is a lot I question about religion and spiritual matters, but holding an individual in warmth, interest, and love is not something I question. Whether or not there is a God listening in and acting on their prayers is secondary.

Regardless, I have not always been comfortable with the Christian idea of prayer. When our daughter did so well in the NICU after being born at 28 weeks gestation, a colleague told me she was sure Emma was doing well because so many people were praying for her. Something in me snapped. And... the little girl who died in the NICU the day before? Did she die because not enough people prayed? I know all the standard Christian responses to this and I still struggle with it.

For now, I have my own request. If anyone wishes to pray on my behalf because I have Parkinson's disease, please do not ask God to cure me. I do not want a miraculous, magical cure. You're welcome to ask God to nudge the researchers in the right direction for a scientific cure. A miraculous, magical cure would only affect me. That's not fair. If there is a cure to be had, it should be for everyone. I'm sort of a spiritual socialist.

I stumbled around before answering my old classmate. Yes, of course she could pray for me. I just wanted her to realize I see my Parkinson's as much as a gift as anything else. There are so many people I wouldn't have met, so many things I would never have been able to do, and so much I wouldn't have learned if it I didn't have Parkinson's. Those of you who read my blog know this already. I hope she will forward a message of gratitude with her prayer.

On the other hand, my husband has become an expert in the Heimlich maneuver. I'm not sure he looks at this as a gift, so... if anyone is listening up there, I could use a little help with the whole chew, swallow, breathe thing. 

(I'd even take the magical miracle cure for this one.)