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Beau's Mom

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Beau's Mom last won the day on March 10

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About Beau's Mom

  • Rank
    Dianne
  • Birthday 01/23/1953

Profile Information

  • Gender
    Female
  • Location
    Seattle, WA
  • Interests
    Staying happy, joyous and free from limitations set by my own limited thinking. Even with PD, and sometimes because of PD, life can be grand!!!

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  1. Dear NN, Does your PD center have a social worker you could meet with? Social Workers are excellent resources for PWP. They can provide information on what's available to you and your spouse based on insurance and available resources. I live alone. I'm so grateful for the agency caregivers who come in 39 hours/week. They help me to still live independently. If staying in your home becomes too difficult. there are other options, including assisted living and Adult Family Homes where couples can live together. It's scary to contemplate but it's better to plan now for any eventuality. If you don't want your kids making decisions, you need to make that clear in a Living Will now. I hope this helps. Dianne
  2. Nothing but rain in Seattle. There is a chance of seeing the sun on Sunday. The meteorologists refer to them as sun breaks. Dianne
  3. Dr. Okun has repeatedly said not to delay medication when symptom relief is necessary. Because PD is progressive, all PD medications eventually lose effectiveness. If you decide against medication now, you can begin proven neuroprotective behaviors like exercise (Tai Chi and Qi Gong are excellent), stress reduction, mindfulness, and meditation. I've read stories by PWP who are able to cut back on medication or even eliminate it by instituting complementary therapies such as these. Dianne
  4. Serenity Now, Please know that many of us have been in your shoes. If it is PD, time will tell. Meanwhile, you can begin an exercise regimen that suits you. That has been proven to be neuroprotective. You can find information on alternative practices like changes in diet, stress reduction techniques, meditation, and mindfulness. These practices have helped me tremendously as my PD has progressed. If your insurance requires a referral for you to see an MDS, you can keep a log of your symptoms and continue to ask your Primary Care Physician and/or neurologist for a referral based on the data you record. There are apps for monitoring symptoms. One is from the Rocky Mountain PD Association. There is also a free website called PatientsLikeMe that keeps all the information you put it and allows you to print charts and graphs to show to your doctors. Gather evidence and present it. It will give you something to replace the frustration and worry that lack of a diagnosis brings and may provide enough evidence to bring clarity to a situation that is often difficult to diagnose. Dianne
  5. Yes, they work quite well. As do the therapy sessions with the rehab psychologist at the Parkinson's Center. I see her monthly when things are going smoothly and more often when I hit a rough patch. Dianne
  6. Depression and anxiety are common non-motor symptoms. You might ask for a referral to a neuropsychologist or rehab psychologist for evaluation. Meds are not always required; sometimes talk therapy with someone who is knowledgeable about PD is helpful. My depression and anxiety hit 20 years before I was diagnosed. I take both an antidepressant and an anti-anxiety medication. Dianne
  7. Thank you all for your care and concern for me. I have sad times and times when I am grateful my son is no longer suffering from the Schizo-affective disorder which was making him so unhappy. I am experiencing a wide range of reactions to my oral carb/levo. I hope to learn this Friday when I can get the PEG-j tube replaced and use the Duopa again. I still need more rest than previously. I imagine it's a combination of grief, illness and the change in meds. Allowing feelings to surface and not trying to stuff them seems to be the best way for me to deal with this roller coaster ride. Dianne
  8. Welcome, Pixi! I met several folks from Australia at the World Parkinson's Congress last September. Some have been Facebook friends for many years. If you are on Facebook, you can search for People with Parkinson's from Australia. Dianne
  9. During my initial PT in 2011, I regained my arm swing, which had been gone for over 15 years. My balance improved and my stamina improved. I wouldn't worry too much about any particular score. A score only reflects function at one moment in time. My abilities can change hour by hour. Getting started right away with PT is smart. Dianne
  10. Thanks for the warning. Dianne
  11. https://therapypureessentials.com/cbd-can-change-the-way-we-treat-parkinsons/ For your perusal.
  12. Yes, jb, I absolutely feel the strength and positive energy being sent my way. I can't imagine how anyone could survive such sadness without the support of loving friends. I am grateful/ Dianne
  13. It is a comfort to know that you are holding me in your thoughts. I have some days that seem nearly normal, then days where all I do is sleep because my body hits a brick wall. Grief is tiring. Some days my carb/levo barely works; other days it gives me dyskinesia. I much prefer the constant level provided by the Duopa pump. I have been held up by friends and family and members of my spiritual community. I am resilient. I will survive this and grow from it. Dianne
  14. I live in WA state where the MM shops have mostly closed down since recreational use became legal. I have used CBD oil in my tea with good effect on both tremor and dyskinesia. I was fortunate to discover a local shop staffed by a former nurse who is quite knowledgeable about MM as well as CBD oil. I don't like the buzz either, so avoid products with THC in them. Discovery, I hope you can find a knowledgeable source. Dianne
  15. jb, I feel the same way about growing food. It is an affirmation of the cycle of life. Hope springs eternal. We deal with the sore backs and granny knots of life as best we can, remembering the new growth that comes after a cold, hard season. Dianne