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Beau's Mom

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Everything posted by Beau's Mom

  1. Beau's Mom

    Good morning!!

    Linda, I will pass on your specific prayer requests. Dianne
  2. Beau's Mom

    Good morning!!

    Goodness gracious, jb! That is exciting news. I'm so happy for you. You won't have much time to worry with it coming up in less than a month. I'll be praying for you. Linda, your news is distressing. We have our weekly prayer call on Wednesday. I will ask for prayers for best outcomes for both you and jb. Dianne
  3. Beau's Mom

    A high school student's Parkinson's Research

    Done. Best wishes on your research. Dianne
  4. Beau's Mom

    Good morning!!

    LAD, Brian Gant spoke at the WPC 2016 in Portland OR. I was there; were you? I probably won't make it to Kyoto next year. Dianne
  5. Beau's Mom

    Good morning!!

    The weather outside sounds frightful, jb. I'm so grateful for the milder weather here in Western Washington. I hope everyone had a relaxing Sunday. Dianne
  6. Dr. Okun, I am 7.5 years post-diagnosis. I've had bad reactions to all agonists so have been on carb/levo followed by the Duopa pump since 11/2015 with very good symptom control and minimal dyskinesia. For the past nine months I've noticed I am startled by movements that used to not bother me. For example, I have difficulty using my walker to go down a sidewalk ramp. I have to use the brakes to feel safe. I am sensitive to riding in a car and react with tightened muscles to every possible traffic danger. The past month I've been awakened from sleep by my body jerking as if I have just experienced an electrical shock, as much as three to four times a night. It also happens when I nap during the day. Could this be disease connected or Duopa related? It happens while the Duopa is running and when it's completely turned off for the night. Lastly, I had a hospitalization with an infection at the g-j tube site three weeks ago. While I was there my oxygen sats ran consistently in the upper 80s at night and low 90s during the day. I was kept on oxygen 24/7 the first two days, and only at night after that. Could low oxygen cause the nighttime jerking? As always, I am grateful for any insight you can offer. Beau's Mom (Dianne).
  7. This is a legitimate survey. I was required to create, administer and evaluate the results of similar surveys as an undergraduate and as a graduate social work student. Please consider helping Christine with her work; it could prove beneficial to us all one day. Dianne
  8. Beau's Mom

    Good morning!!

    Thanks, Em. I feel comforted. Dianne
  9. Beau's Mom

    The period at the end of the sentence.

    Deepest condolences to you, genden69. May your grief be eased by knowing how much you are supported by your friends here on the Forum. Dianne
  10. Beau's Mom

    Good morning!!

    jb, you are always in my thoughts and prayers. I feel anxious a good deal of the time lately. I don't know the cause yet. Maybe it's PD related or maybe I'm scaring myself with future fears. It's very tiring so I have cut back on posting and pretty much everything else. Love to all, Dianne
  11. Beau's Mom

    http://pdrecovery.org/updates-latest-research/

    I began in 2011 with guided meditations from Meditation Oasis. There are more than 40 to choose from. My favorite was Beyond Pain; it helped me learn not to resist the changes happening in my body. Through the years I have used most of them. Then they released iSleep Easy, which allowed me to sleep through the night. I practiced meditation at a deeper and more personal level through participation and practicing the principles of A Course in Miracles. I was able to identify and release faulty perceptions that kept me stuck in the role of feeling that I was a victim. In 2015, I joined a group of Christian Mystics in Seattle. As an active student of the Order of the Mystical Christ and attendance at services at Sophia Wisdom Centers, I continue to grow spiritually and am learning to focus on the Love and Light that we are all created to be. As my signature suggests, I recognize that I am not simply a body with PD. I'm here on Earth to learn spiritual lessons through my experiences and to share what I have learned with others. Thank you for asking. I had no idea that I would answer your question this way today. It feels good. I am happy! Dianne
  12. Beau's Mom

    Good morning!!

    Wishing all who celebrate a Blessed Easter. I had a vivid dream last night that I was planning a huge summer garden to feed a community. I was full of energy. My mind was actively engaged. I felt resurrected! A woman can dream, right? Dianne
  13. Beau's Mom

    http://pdrecovery.org/updates-latest-research/

    Yes, Sherrie, I have an active meditation practice that keeps my mind focused on God. It is sometimes the only thing that reduces my symptoms when all medical interventions have failed. Dianne
  14. Beau's Mom

    Father with PD coping with alcohol

    I have both personal and professional experience with alcoholic relatives and spent 30+ years in the drug and alcohol treatment field as a Licensed Chemical Dependency Counselor and a Master's level Social Worker before being sidelined by PD. I suggest that all family members attend Al-Anon meetings. As for your dad, a professional intervention may help him become willing to seek the help he needs. Drinking increases the chance of a serious fall. It adds stress to PD for both the PD patient and family caregivers. Stress worsens PD symptoms. Both alcoholism and PD have specific treatments. They are best treated simultaneously by the specialists in each field. At a minimum, the neurologists or MDS needs to know about the drinking. Some PD medications can lead to compulsive behaviors that weren't there before. Dianne
  15. Beau's Mom

    Good morning!!

    Welcome home, Marcia! Aren't grandchildren grand? Your cats really missed you! I've missed you, too. Dianne
  16. Beau's Mom

    Good morning!!

    A partly cloudy day turned into light rain showers this evening in Seattle. One of my caregivers stopped working with me abruptly last week after a devastating third cancer diagnosis. Please pray for Debbie Flannery. As to your statement, jb:
  17. Thanks for sharing this. There are similar microfibers in fish and shellfish from the waters of Puget Sound where I live, so we are eating plastic as well. I don't know if it's related to PD or not. I stopped using bottled water years ago. I try to buy natural fiber clothing, sheets and towels because the microfibers break down and are washed down the drain. Dianne
  18. Beau's Mom

    Single with PD

    I discussed the experience of dyskinesia at the peak of the carb/levo dose as well as when a dose is wearing off. He called it biphasic dyskinesia. I had it until I began using Duopa gel and stopped oral carb/levo. I have recently noticed tremors in my feet and ankles. It affects my balance even though I always use my walker. Very sturdy shoes help. Dianne
  19. Beau's Mom

    Reaction to increased Levodopa

    Sherrie, the dyskinesia I experienced in 2012 was due to having been prescribed way too much carbidopa/levodopa for several weeks. When the dosage was suddenly reduced, my body reacted with more severe dyskinesia than I had when the dose was too high. I later learned that I have biphasic dyskinesia; I become dyskinetic at the peak of the c/l dose and as the c/l leaves my body. Dianne
  20. Beau's Mom

    Recent Diagnosis, and a lot of confusion

    Dr. Okun, the MDS who answers questions in the Ask the Doctor section of this forum, is in Florida. He could point you in the right direction. Dianne
  21. Beau's Mom

    Sinemet Question

    Sinemet can control symptoms for several years. You could ask Dr. Okun in the Ask the Doctor part of the Forum for a more complete answer. Exercise is best for delaying disease progression. PD is a snowflake disease, with each person reacting and progressing differently. Dianne
  22. Beau's Mom

    Recent Diagnosis, and a lot of confusion

    Welcome, Nikki. You've been on a merry-go-round in the past year! It sounds like you need to see a Movement Disorders Specialist (MDS) to get things sorted out. Check to see if your insurance will cover one. MDS are neurologists with extra years of training in PD and other movement disorders. You can call the PD Helpline listed on the home page of this website to get assistance in finding one that your insurance will cover. Best wishes, Dianne
  23. Beau's Mom

    Good morning!!

    O happy day when you were born, jb! Dianne
  24. Beau's Mom

    Good morning!!

    Good afternoon. Somehow the morning slipped away. LAD, your son is very talented. I enjoyed his singing. It is amazing how quickly he can switch from one song to the next without missing a beat! Sheila, I sure can relate to the PD progression topic. Breaking out of the isolation is difficult for me, too. I was released from the hospital last evening after several days of IV antibiotics for an infection around the site of my peg-j tube. It was a very strange experience. They had only a few items on the menu that I could eat. The first doctor I saw told me I would have to have food brought in from home because they are not equipped to feed patients with special dietary needs. Fortunately one of my caregivers was able to bring a few items in. I was in isolation so there was no way to heat the food up once it was in my room. I lived on gluten-free banana muffins and peanut butter cookies, tangerines, and sliced bananas with lukewarm tea for three days. I had a stunning view of downtown Seattle and Elliot Bay from the window in my room. I will try to upload a picture if I can figure it out. JB, I feel sad about the delay in your DBS surgery. I've seen it help many people. It will happen exactly when it is meant to. Hang in there. Dianne
  25. Beau's Mom

    Q About Arm Swing

    The stiffness in my right shoulder predated my diagnosis by two years. The lack of arm swing predated my diagnosis by 12 years. The muscles were gradually tightening the entire time. I began PD specific physical therapy shortly after my 2010 diagnosis. Although neither arm was swinging anymore, I was able to regain arm swing through PT and at-home exercises. Ask for a referral to a PT who specializes in PD. Some lost function can be regained. Dianne
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