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Things are changing too fast

Hi my name is Bill I was told that I had Parkinson’s 3 years ago. But the changes are coming on way to fast. I believe that I have had it for more like eight years. I have gone from 205 lbs to 180 lbs in the past year. My balance real bad my hearing is gotten worse. I have a lot of pain in my neck and back. But the thing bothering the most is my food will not go down it feel stuck in my throat. I am very worried I see my neurologist in a month and hopefully he can explain what is happening to me.

  1. I am so sorry that you are experiencing these symptoms, Bill. You may have done so already, but have you contacted your movement disorder neurologist to assess your condition. As a Speech Pathologist [SLP], who has PD, it is recommended that an appointment be scheduled with an SLP who can assess your swallowing difficulty. They can work with you on safe swallowing techniques, as well as food consistency changes that will make it easier to swallow. For the pain in your back and neck, it is suggested that you make an appointment with a Physical Therapist to assess your neck/back issues and balance issues which are definitely related to the PD. Maybe, in the meantime, while waiting for a movement disorder neurologist appointment, you could request that your primary care doctor write a script for "Evaluation and treatment for physical and speech therapy for dysphagia" to help you. It is suggested that you see an SLP ASAP for the food getting stuck in your throat, which can be a contributing factor to your weight loss and aspiration, which is a very serious problem. Aspiration is the number 1 cause of death for people with PD.[1] I would get help sooner than later. Please keep me informed about your progress, I care.

    [1] https://www.michaeljfox.org/news/swallowing-and-parkinsons-disease

    Concerned because I care,
    Best, Marc M., Moderator, SLP, parkinsonsdisease.net

    1. excellent suggestions! I'm a newbie here, and I never would have thought to request an appointment for a movement specialist ( for the swallowing) Truthfully, I didn't know such a thing existed. 👍

    2. Thank you for your comment, Community Member. For clarification, a movement disorder Neurologist will treat your Parkinson's in all areas of movement. A speech pathologist who is trained in swallowing disorders will evaluate your swallowing abilities for safety, suggest different diet consistencies and can give you exercises. Warmly, Marc M., Moderator, parkinsonsdisease.net

  2. Hi , we can definitely understand feeling concerned and worried about an impending doctor appointment. I truly hope your doctor can offer you some insight and a path forward to help you feel your best. If we can ever offer a listening ear or point you in the right direction to any information you may be searching for, please don't hesitate to reach out. We are here for you and care. Please feel free to check back in and let us know how your appointment goes next month. Kindly, Jessica, Parkinsonsdisease.net Team Member

    1. - my best advice, find a Dr that understands PD,And see him often. I write my concerns down, so I don't forget ( or get frazzled and unable to communicate my problem!)
      I fired my primary care Dr today, because, although she's a good Dr, she just doesn't have the experience with elderly or disabled people that I need. I've kept her because I like her personality. But I've realized, she's clueless about my number one concern- my Parkinson's disease. Being your own best advocate is crucial. 👍☀️🙂

      1. Congratulations to you for realizing your doctor's limitations. Being proactive about who provides treatment to meet your needs is tantamount to care. Having a doctor who has a great personality, but has limited knowledge in PD care is a dangerous combination for the best patient care and advice. Regards, Marc M., Moderator, parkinsonsdisease.net

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