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Beau's Mom

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Everything posted by Beau's Mom

  1. Beau's Mom

    How does the Mask begin?

    Welcome, Barbara. Take several slow, deep breaths and relax your mind. Feeling overwhelmed and wanting to predict the future were two of my first reactions when I was diagnosed. I nearly drove myself and those around me crazy. The PD mask came on slowly for me. Three years before being diagnosed I noticed that my smile was lopsided; the right side of my face was tighter. My PCP checked my carotid arteries for blockages. He insisted that the tremor in my right hand was from too much thyroid medication. Your age at the time of diagnosis can be a predictor of how quickly PD might progress. If you are younger than 50, you would be considered Young Onset. People with YOPD generally have slower progression than those diagnosed after age 60. Exercise has been proven to slow PD progression. If you have an exercise regimen, stick to it. If you don't exercise, ask your neurologist or MDS (Movement Disorders Specialist) for a referral to a Physical Therapist and an Occupational Therapist specializing in PD. They will complete a thorough assessment to determine what your current deficits are and develop a personalized plan to address and even reverse those deficits. Living well with PD is possible, even probable. Stress makes the symptoms worse. We will offer our experience, strength, and hope. More questions will certainly arise. Feel free to ask questions of forum members and the professionals on this site. Dr. Okun and Mark, the pharmacist who also has PD, are always happy to help. I'm so glad you took the first step. You are among friends here. Dianne
  2. Beau's Mom

    Good morning!!

    LAD, you will be great! Your positive, can-do attitude will overcome the stage fright. You will bless many PWP and their families. jb, thanks for being here when the rest of us are overcome by apathy or inertia or life. I've been to RSB this morning and am ready for a shower, lunch, and a nap. Don't worry; be happy! Dianne
  3. Beau's Mom

    This & that!

    I participate in clinical trials to further the knowledge base of what works for PD, as a way of giving back to the experts who have helped me on my journey, and as a way to make a little extra cash. Dianne
  4. Beau's Mom

    Summer adventure season starting

    Welcome home, Stump! Dianne
  5. Beau's Mom

    Good morning!!

    Welcome to the best half of your life, LAD! Dianne
  6. Beau's Mom

    Phantom smells???

    Thank you, One Day at a Time, for introducing yourself to us. Welcome to the Forum! Dianne
  7. Beau's Mom

    Good morning!!

    Dear jb, I've had surgery on both shoulders. I can so relate to finding a comfortable position for sleep while babying my various sore areas. My deposition Monday left me worn out until yesterday. A hearing is set for December 5. I won't know the outcome until then. Dianne
  8. Beau's Mom

    duopa pump

    The biggest and most immediate change was no wearing off. Duopa is continually delivered to the part of the small intestine that absorbs it. Within seconds it reaches your brain and you remain in an "on" state for up to 16 hours. I still have fluctuations in energy level and am still affected by stress. My pump is set for up to five extra doses per day; I rarely use them. I keep a bottle of carb/levo 25/100 tablets for use if I find myself awake in the middle of the night and it is not time to reconnect the pump. My sleep is generally good, so it is a rare occurrence. Duopa must be refrigerated. If your electricity goes out for more than 12 hours, your Duopa would have to be replaced. You will want to check with your insurer to see if this would be covered. Dianne
  9. Beau's Mom

    duopa pump

    The surgery required a one night stay in the hospital. Within a week the stoma had fully healed. Eight days after the tube was placed, my MDS and a nurse from ABBVIE spent most of a day adjusting the flow rate. Over the next few months, the settings had to be adjusted twice.; once because of dyskinesia and once for levodopa-induced dystonia. Dianne
  10. Beau's Mom

    duopa pump

    noah, I'm not sure I understand your question about adjusting to my new normal after my diagnosis. I was diagnosed in 2010. It took over three years to accept all the changes that resulted from my diagnosis. Some were easier to accept than others. My husband leaving me was the hardest. You do have a lot on your calendar. The pump will be ready when you complete your list. One thing I've learned is not to try to do too much at once. Dianne
  11. Beau's Mom

    duopa pump

    Apologies, noah. I thought I sent this last week. It popped up just now when I went to answer your post from today. noah, a nurse from ABBVIE will come to your home and train you in the use of the pump. The PEG-j tube, once placed and healed, should require simple daily cleaning with soap and water. The procedure takes about 30 minutes each morning and 10-15 minutes at bedtime. The tube is flushed with tap water before you connect each day and when you disconnect each evening. All questions you have can be answered by a nurse assigned to you at ABBVIE. You will be given the opportunity to talk by phone with a patient or caregiver who has experience with the Duopa system up to five times before and after you start Duopa. Dianne
  12. Beau's Mom

    A journal became a blog

    Yes, jb. It is a good morning. I'm asking for positive thoughts and prayers this morning. Four years ago, I made an official complaint with the Seattle Office for Civil Rights against the corporation that owns my apartment building due to lack of accessibility to the common areas of the building. Today I'm facing a deposition at the office of their attorneys. It feels daunting. I won't be alone because God is always with me. I'm taking all of you with me as well. Dianne
  13. Beau's Mom

    Summer adventure season starting

    A woman from my church returned yesterday from India and Nepal. Enjoy! Dianne
  14. Beau's Mom

    Good morning!!

    Pathfinder, hectic is an understatement! I will be thinking of you and your husband and sending healing energy your way. Dianne
  15. Beau's Mom

    duopa pump

    noah, I am very pleased with my Parkinson's experience on the Duopa gel. I, too, was tired of having oral carb/levo wear off every 2.5 hours. I had biphasic dyskinesia--jerky movements when the medication was at its peak and as it left my system--every dose. The pump can be set very specifically for maximum benefit and the least amount of dyskinesia throughout the day. Please keep us posted as you go through the process. Dianne
  16. Beau's Mom

    Good morning!!

    Good morning to all! Loved your nature story, jb. That was one intelligent coyote, using a catch one, get one free coupon. I'm sure he is very gifted and understands that anvils only exist in cartoons. Dianne
  17. Beau's Mom

    Good morning!!

    jb, I nap every day; sometimes twice. Things will get done or they won't. It feels good to let myself be exactly who and how I am in any given moment. Dianne
  18. Beau's Mom

    Getting Out

    Any stressor, positive or negative, makes both motor and non-motor symptoms worse for me. Stress relief techniques like slow, deep breathing and staying aware of my fearful thinking help me make it through most situations. I stay home more than I did in years past. I'm aware of the dangers of total isolation so I haven't become a complete recluse. Dianne
  19. Beau's Mom

    Good morning!!

    Way to go, Texas Tom! Dianne
  20. Beau's Mom

    Good morning!!

    Good morning to all. I'm slowly crawling out from under a rock of pain caused by a strained muscle in my left shoulder. I've had to take nearly double the amount of muscle relaxer for the past week. I've been using two heating pads--one for my shoulder and one for my right hip. My Parkie life goes on. Fortunately, I have a rich inner life that brings much solace and comfort, and wonderful friends who understand and bring me joy. Dianne
  21. Beau's Mom

    Shower fall!

    Would he be willing to use a shower chair? I've broken enough bones falling to place safety first. Dianne
  22. Beau's Mom

    A little something to think about

    Thanks for sharing this, LAD. Dianne
  23. Beau's Mom

    Good morning!!

    Thank you, jb. Your comment brought a smile to my face. Dianne
  24. Beau's Mom

    Good morning!!

    Peace, I'm glad you found my comments helpful. I have felt that letting-go-of-tension you described. It's amazing how much stress we carry without even knowing it. Give yourself a big hug. It takes courage to feel feelings and accept changes. Dianne
  25. Beau's Mom

    Good morning!!

    Peace, I had similar experiences when I was pushing myself to be as competent and productive as I was before PD. My body couldn't keep up with my desire to maintain the self-image I'd spent my life perfecting. I was exhausted and tears flowed easily. Seeing a Rehab Psychologist at the local Parkinson's Center of Excellence helped me through the lengthy period of learning to love and accept the revised me. I know the grief process is difficult; it's also unavoidable. Blessings on your journey, Peace. Dianne
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