When Your Disease Progresses

When Your Disease Progresses

When you live with a chronic illness, it is sometimes so easy to fool yourself into thinking life isn’t so bad. Life isn’t so hard. You’ve got this.

Then you go to a doctor’s appointment and walk out of his office with a rock sitting in the pit of your stomach as you mull over the comment he made:

“Your disease is progressing.”

I wasn’t expecting that little bit of news. I wasn’t surprised by it, but … I wasn’t expecting it.

Now, I know I can’t go back to the way things were, and I know things are not going to stay the way they are now. But I wasn’t expecting that little bit of news. 

I wasn’t expecting a boulder to begin to rumble and tumble down the mountainside, taking with it bits and pieces lying along its edges, creating an avalanche, rushing down to devour me. And it seems as if it might do just that: devour me.

I know my disease is progressing. I feel it every day. When tremors break through, they leave me wondering when I will no longer be able to hide them. Just like I did before I had deep brain stimulation.

I know it’s progressing. I see it in the mirror looking back at me. I hear it in my soft voice that even I struggle to hear.

I leave in two weeks to go visit my mom and dad. I will be flying and for the first time, I am anxious. Nervous even. Almost fearful. I am anxious about checking in and getting my suitcase in the overhead compartment above me. Nervous about flying. Anxious about having to use the bathroom while in flight. Nervous about the terrible virus. This will be the last time I fly alone. It is too nerve-wracking.

One thought feeds into another and soon I am thinking about “last times.” The last time I board a plane. The last time I will be able to hold a newborn granddaughter. It makes me think about things I don’t want to think about and I want to cry. I do cry. And I wish my husband were here to console me. 

All this because the doctor matter-of-factly said four words to me during my 15-minute appointment, which, in my mind, has lasted all day …

Your disease is progressing.”

So it is.  

So it is.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Sherri was diagnosed with young-onset Parkinson’s disease over 15 years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids. Sherri is taking life somewhat slower, and perhaps with guarded steps, but she’s not giving in.
Sherri was diagnosed with young-onset Parkinson’s disease over 15 years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids. Sherri is taking life somewhat slower, and perhaps with guarded steps, but she’s not giving in.

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  1. SB says:

    Dear Sherri,
    These are the words we afflicted with this insidious disease dread – the realisation of that which we have sensed is true.
    May Joshua 1:9 become a reality to you in this time, and may this trip not be one of anxiety, but transpire to be one of comfort and joy.
    Take care and stay safe, SB

    • Mark Frye says:

      In all of my experiences i have had in my life I have been able to get the upper hand on. Not this time not this disease. Nott
      This is going to hit home because with left and right DBS no matter how much i walk or how much i golf I play.feel it knocking at the door. No matter how much i try to ignore it and i feel it. Its winning and it will win. Just like it took my friend. Dam you Parkinson’s dam you for daming me.

  2. Jen Kaye says:

    I feel for you so much. My husband has had PD for 15 years. He had DBS 10 years ago. He’s still standing, refuses to give in, never depressed. It helps he’s got a strong partner like me – all he has, as his sons never bother with him beyond a call once every two or three months. But when the disease progresses the partner also suffers. All we can do is take each day as it comes and I try not to think of what might have been with my wonderful husband. He inspires me to keep going too.

  3. Janet says:

    My father died of the complications of PD 22 years ago. My sisters and I cared for him…except for the last year of his life. He was in a nursing home at that time. I remember crying often because I knew what was to come. My sister now has PD also and I am her caregiver. Today we went grocery shopping and I said afterwards that it would be the last time. It is getting too difficult…more for me than for her I think. After reading your article here…I think I will allow her continue grocery shopping with me. My struggles with her are nothing compared to what she is going through. I hate this disease.

  4. Linda says:

    Dear Sherri….you’ve posted a truly beautiful comment. I just loss my husband to cancer and caring for him AND having PD myself was pretty challenging. Then along comes this virus which doesn’t make any of this any easier. I’m debating on whether to fly to Florida or not to spend my 80th birthday with my son and his family. I’m afraid of planes right now and the train didn’t seem a whole lot better. I don’t see any end in sight for a long time. Even if they come up with a vaccine, it’s going to take awhile to administer it to everyone. But so many people are dealing with these issues that I try not to get down too much…and so many are so much worse off. You and your husband take care….

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