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Beau's Mom

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Everything posted by Beau's Mom

  1. Beau's Mom

    Good morning!!

    Good morning! jb, a five-pound sandwich would feed me for a week. I'm happy to hear that you are following doctors orders. What a blessing to have a supportive family nearby. The visit with my daughter is going well. She is sleeping a lot. That is a perfectly acceptable way to deal with a devastating diagnosis. I'm sure she will move forward in her grief process, as we all do. Her husband installed my air conditioner on Monday when the temperature reached the low 90s. He is a kind and patient man and is already looking into support for himself and my daughter. The PBC Facebook page has 3600 members. I pray that they are as kind and helpful as those of us here in Parkyland. Love to all, Dianne
  2. Beau's Mom

    Good morning!!

    Thanks for the hug and words of encouragement, jb. Much appreciated. I will see her today; she arrived in Seattle yesterday afternoon. Dianne
  3. Beau's Mom

    Good morning!!

    It's great to hear from you, jb. I understand the disconnect between what I plan to do in the morning and being too tired to do it later in the day. It happens to me nearly every day. My daughter and son-in-law are arriving on Sunday for a 10-day visit. Lillian was just diagnosed with a rare progressive autoimmune disease that has no cure; Primary Biliary Cholangitis. There is medication she can take to delay progression. She had an allergic reaction after two days. We are hoping that a different generic won't cause an allergic response. It is beginning to sound eerily familiar and deja-vu-ish. Stay happy, everyone. Dianne
  4. Beau's Mom

    Good morning!!

    I think perhaps we are all holding our breath waiting to hear from jb. Meanwhile, life goes on. I saw my MDS today. I've been having myoclonic jerks (small surges of electricity) that make me want to jump up from the seat of my walker and run as if I'm in danger. I had described them to my MDS two months ago as an exaggerated startle reflex, which he didn't address at all. Thanks to Dr. Okun, I used the correct terminology and a change was made in the rate of my Duopa. I'm so grateful for the things I learn on this forum. Dianne
  5. Beau's Mom

    Voice weakness

    Wishing you the very best at your next MDS appointment, Pa Pa Doug! 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. Beau's Mom

    Good morning!!

    Wishing you better times ahead, jb. Very happy to hear from you! Dianne
  8. Beau's Mom

    medicare coverage

    A call to Medicare could give you more information specific to PD. A few years ago, a national PD advocacy group successfully lobbied to have PT continue for PWP even if they weren't making progress, but were maintaining a certain level of function. The 44 visit limit may be for each separate problem. If you reach the maximum early in the year for balance then broke your hip in September, they couldn't deny PT for the new condition. I sure hope that talking to a live person at Medicare gives you better answers than you've gotten so far. Dianne
  9. Beau's Mom

    medicare coverage

    Hi, noah. I have Medicare and a supplement and both have paid for PT. Was it someone from Medicare that told you about the 44 visit limit or was it the staff at the clinic? It is my understanding that the number of visits is based on the PT's initial evaluation and on your progress. I suggest checking directly with Medicare. If the PT clinic is private, that limit may apply. For clinics affiliated with a medical center, you can have more visits. Dianne
  10. There is a website, patientslikeme.com, that has the UPDRS as well as the Hoehn & Yahr scale your doctors use. You can track your symptoms over time. They even have a handy printout you can take to doctor visits. Check it out! Dianne
  11. Beau's Mom

    Is it his PD or could it be his way to deal with PD?

    Shanon, I worked in the addictions field for 25 years before being diagnosed with PD myself. With my PD, if I've had a particularly stressful day, even I sound drunk, have worse balance and experience brain fog. I don't drink at all. If your husband didn't have a drinking problem before, it's unlikely that PD would cause one. That being said, Pramipexole is an agonist. Agonists can cause compulsive behaviors. It would be a good idea to discuss this with your husband's doctor yourself before bringing it up with your husband if you have permission and are listed as a person able to discuss his care on the HIPAA form he signed at the doctor's office. Dianne
  12. Beau's Mom

    Good morning!!

    Dear Marcia, I understand your post because our lives sound so similar. I have no idea what my password is. I just stay signed in. If I get logged out, I create a new password and add it to a long list of old and new passwords I keep in a book on the table next to my zero-gravity lift recliner. I've been stiff from dystonia in my right iliac crest and hip for three years now. My physical therapist makes house calls twice a week. Riding in a car creates more pain, so I spend more time at home. I finished a book I really liked last night that I started three months ago. It's life in the slow lane; I'm learning to be happy with it. Dull works for me! Post when you can. I love hearing from you. Dianne
  13. Beau's Mom

    Duopa Pump...

    That's what I have been advised to do if I get too dyskinetic. My MDS runs mine on the low side to prevent dyskinesia. It's not perfect but it beats oral carb/levo any day. Dianne
  14. Beau's Mom

    10 good years???

    John, don't pay any attention to the neurologists you saw. I was diagnosed in 2010 by a general neurologist whose only advice was to read everything I could about PD. Certainly bad advice for me. I scared myself for three months until Dr. Okun suggested I find an MDS. The general neurologist didn't even know they existed! Eight years later, I've progressed yet am able to live alone. PD is referred to as a snowflake disease. Each person's experience is different. If it hasn't already been said, begin or continue an exercise program and wait for guidance from the MDS. Best wishes as you begin your PD journey. Dianne
  15. Thank you, Dr. Okun. My next MDS appointment is in mid-June. I will bring it up then.
  16. Dr. Okun, I had an overnight oxygen sat test done; it showed no problems. After more research, I'm convinced these are myoclonic jerks. They are occurring with greater frequency throughout the day. Can you tell me if anything can be done to relieve them? Dianne
  17. Beau's Mom

    Ask a Physical Therapist?

    We could all write to the Administrators and ask for that. We used to have an Ask the Dietitian (or was it Ask the Nutritionist?). It never hurts to ask. Dianne
  18. Beau's Mom

    Missing Meals?

    Linda, I'm happy to report that my rooftop Pea Patch is chock-full of spinach, mustard greens, arugula, scallions, green beans, miners lettuce, Vietnamese coriander, purple bok choy, Foxley and lemon thyme, parsley, tomatoes and two kinds of potatoes. Organic produce is so much more delicious than what one finds in the produce aisle at the supermarket. Fresh from the garden is even better. Dianne
  19. Beau's Mom

    Missing Meals?

    In a word, stress. Whether we're aware of it or not, stress (positive or negative) always increases my PD symptoms. Family and caregiver conflicts are the biggest stressors for me. Dianne
  20. Beau's Mom

    Good morning!!

    jb, I will add my wishes for a strong, steady, and wholly successful recovery. Thank you for sharing even the difficult parts with us. The only advice I will offer is that offered to us on each of your posts: Don't be hard on yourself, try your best and stay strong. Dianne
  21. Beau's Mom


    Read up on sleep hygiene. Suggestions are using the bed for sleep and sex only. No TV or electronics in bed. The screens put out a type of light that interferes with sleep. Go to bed and wake up at the same time has already been mentioned. If you don't fall to sleep or wake up during the night, try to relax for 20 minutes. If you still can't sleep, get up and read an unexciting book or magazine by lamplight. Do not watch TV or use any electronics. Have a light snack or warm decaffeinated beverage. As soon as you feel sleepy, return to bed and try sleeping again. I use an app named iSleep Easy from the app store. I created a playlist that works for me. There is one titled Wee Hours Rescue for waking up in the middle of the night. This allows me to sleep 7 to 8 hours each night. Sweet dreams! Dianne
  22. Beau's Mom

    Good morning!!

    To jb and all who have undergone DBS, I applaud your strength and courage! It sounds like a good time to practice the principle of One Day (or one moment) at a Time. I wish you all the best life has to offer. ✨ Dianne
  23. Beau's Mom

    Good morning!!

    She-Ra, I smiled at the thought of having a post-it from 12 years ago turn up. It brought to mind how many pieces of paper I've tucked away for safekeeping and never found again. If someone collected them all after I passed, I wonder what they would deduce about my life. Dianne
  24. Beau's Mom

    When do you tell your customers you have PD?

    Andy, Superdecooper's advice is excellent. I have a Type-A personality and it took quite awhile for me to realize that perfection is not a choice when we have PD. I stressed myself into more severe symptoms for several years before I recognized that fear of a disastrous ending kept me from having any joy at all. Pat yourself on the back for having hung on for this long, and for asking for help. We are happy to share our experience, strength, and hope. Dianne
  25. Beau's Mom

    Good morning!!

    Still holding you in a huge hug, jb. Thanks for checking in with us! Dianne