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What Are Some Nagging Concerns You Can’t Shake About Parkinson’s?

What Are Some Nagging Concerns You Can’t Shake About Parkinson’s?

Living with Parkinson’s disease can be a constant challenge. PD can affect so many aspects of a person’s daily life and overall well-being. One thing many with PD can attest to is that the condition often presents many nagging issues and concerns that weren’t expected nor anticipated. These challenges and concerns can contribute to the need for developing countless adjustments and lifestyle changes. We recently asked our community members, “What is the one nagging concern you can’t shake about Parkinson’s?”, and the responses we received were so varied and interesting. Read on below for a sampling of some of the thoughtful responses we received.

Movement and stiffness

As Parkinson’s disease progresses, so does its physical symptoms, condition-related concerns, and other adverse effects. Concerns with the ability to move were often cited by many of our community members. Changes in movement or stiffness, as well as the potential lack of movement was distressing for many.

“That I can’t keep moving.”
“The aching and stiffness that affects movement and stability.”
“During the “off times” when the medications wear off, I have muscle spasms and stiffness.”
“My overall movement and stability.”
“Eating food. My husband is at a stage where he chokes while eating. Most foods are liquefied for him and he still has a problem.”
“When my arms and legs get so stiff.”
“That I’ve slowed down.”
“My toes curling up.”
“I have continual spasms.”

Pain and fatigue

For some, living with the pain and fatigue of Parkinson’s disease is the most agonizing concern. Experiencing prolonged pain or fatigue that cannot be alleviated or that is inadequately alleviated can be exasperating for many, as well as lead to significant impacts to an individual’s quality of life.

“I’m in extreme pain.”
“The incredible fatigue.”
“The extreme pain of my calf muscle having continual spasms and my toes curling under.”
“Fatigue accompanies all my symptoms.”
“The side effects of the meds. I am sleepy and nod off easily.”
“The extreme fatigue.”
“The pain.”

Mental and emotional impact

Managing the emotional and mental toll of Parkinson’s disease was often reported as the most distressing concern for some of our community members. Coping with the physical changes that PD can bring, as well as dealing with other aspects of the condition, such as changes to an individual’s daily life, can be demanding, both emotionally and mentally.

“The off times make it so overwhelming to do normal everyday things.”
“I’m very sad and frustrated.”
“It’s not getting any better, so much for my golden years.”
“I’m so sad. I can no longer drive except for short trips close to home.”
“Thinking about what I used to be able to do.”
“That it is not going to get better, just worse, unless a cure is found.”
“I’m so scared.”
“I’m concerned about the future.”

It’s clear from all of the responses we received that there are many nagging concerns associated with Parkinson’s disease. These frustrating concerns can be physical, mental, or emotional in nature and can all play a part in what makes PD challenging to manage.

We would love to hear from you. What is your most nagging concern with Parkinson’s disease, and how do you try to cope with it?


  • dmanderson55
    1 year ago

    I’m becoming more concerned about the loss of my voice – both volume and clarity. I was diagnosed with PD 15 years ago at the age of 53. I was concerned about losing my voice, so participated in the LSVT voice program. It helped quite a bit, but have not done so in the past 5 years…..and I don’t know if it would help at this point in my life.

  • Dan Glass moderator
    1 year ago

    I’m sorry you’re going through that. If eligible, you might be able to get the Office of Vocational Rehab to pick up the tab (as based on financial eligibility).

    Sometimes it’s hard to know how we sound with loss of hearing too. I always defer to what the “CEO of My Brain (my wife)” feels about my face to face vocal clarity since I don’t feel able to judge my own.

  • Dan Glass moderator
    1 year ago

    How much it bothers people around me (esp. my wife and family). I can deal with my place in the now, but the feeling of how sad it makes my wife and concern for future finances lurks in the distance.

  • rebeccafriend
    1 year ago

    @Chris H. I agree with you about physical therapy. I’ve been doing it on & off. When My PD gets worse my dr. prescribes PT. I’m on my second bout of it right now. I’m taking C/L 50-200 mg twice a day and 25-100 mg as needed. My biggest problem is balance. If I move too fast my head spins. I’m fortunate that I don’t really have down times yet. I am scared of the future.

  • Chris H. moderator
    1 year ago

    I can definitely understand the fear of the future, @rebeccafriend. It’s hard not knowing what’s next in your PD journey. A lot of folks here in the community have commented on taking it one day at a time to help combat that worry. Also, I’m glad to hear that PT has been helping you! I’m hoping that it can continue to address the balancing problems. Thanks for taking the time to comment! – Chris, Team

  • chevygirl6611
    1 year ago

    Well—until recently my main concern was pretty much in line with everyone else. However, a few weeks ago after requesting a refill of my Carb/Levodopa ODT, I was told that not only was my pharmacy unable to fill the rx but it is possible the ODT version may be discontinued. The regular version always made me extremely nauseas. There was no warning. Just—Oops!! Sorry. As confusion ensued I ran out. I have a DBS so that was helpful. But . . . I still require my meds. My doctor finally settled on C/L with a nausea med to accompany it. I was diagnosed in 2008 and I think that was probably the most scared I’ve been since my initial diagnosis.

  • Chris H. moderator
    1 year ago

    Ugh, that’s really unfortunate, @chevygirl6611! I’m sure that was a nuisance to deal with. Has the nausea med been helping with your new C/L regimen? Thanks for taking the time to weigh in! – Chris, Team

  • chevygirl6611
    1 year ago

    Actually the new C/L does not make me sick most of the time. Thankful for that!!!

  • Clover
    1 year ago

    The stiffness and the pain in my back is getting worse from it. In the am, all I can do is shuffle until the meds kick in. I fractured my shoulder and now the pain is increasing from that because of the stiffness. The down times come so random.

  • Chris H. moderator
    1 year ago

    I’m so sorry to hear that, @clover. That sounds really painful. Have you considered physical therapy to help with the stiffness and pain? We have some more information on that here: Feel free to bring this up to your doctor to see if would be suitable. Hope this helps! – Chris, Team

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