Forum Replies Created

  • patricia-b-wargo

    Member
    August 10, 2020 at 2:06 pm in reply to: Staying Motivated

    I tend to think in terms of bullet points when responding to such a broad question as “Staying Motivated,” So here are the ones I’ve thought of while reading the previous posts:
    1. Exercise has proven to be essential to maintaining my motivation, specifically Rock Steady Boxing. It provides not only a tremendous workout, but socializing with others in the classes helps a well. I see a real difference in my body’s responses when I don’t get a good workout (at least 1 hr. per session). Note the small advances you make in whatever exercise program you choose to incorporate into your life.
    2. Patience is something I had to work on, for PD does slow me down.
    3. Practicing Mindfulness techniques has helped me become more aware of my body’s reactions.
    4. Nutrition – studies have shown that the Mediterranean diet meets our PD needs the best (See dr. Mischeley’s work) I am just starting to incorporate that into my diet, so the jury’s still out on that one for me personally.
    That’s all I can remember for now. (Memory is also an issue with PD) so I’ll sign off.
    Patty W.
    5.

  • patricia-b-wargo

    Member
    August 10, 2020 at 1:18 pm in reply to: How do you maintain open communication with your partner?

    I was diagnosed in September 2004, 3 months prior to my husband’s retirement. Talking openly about my symptoms and including him in discussions with my neurologist at my appointments, has benefited my level of care. together we make up a list of questions and observations about my symptoms prior to each neurological appointment. Discussion of what may be a natural result of aging and differentiating that from PD symptoms can be a good starter for communication. It’s important for your partner to understand PD and it’s symptoms, and their impact on each of you.
    Support groups can also be helpful in providing a forum for opening up discussions between you and your partner.

  • Our RSB coaches have developed routines weekly for us to keep up with our exercise. They even do a scheduled zoom session each week so we can participate “together” doing the routine. I also signed up for the LSVT/pwr4life program with a local physical therapist who provided the program via telemed. The RSB coaches have also provided an opportunity to gather at 2 different parks in the area to walk together in June.

    Overall, I’m getting more exercise than I did before the covid 19 crisis.

  • patricia-b-wargo

    Member
    June 11, 2020 at 2:51 pm in reply to: Has Covid-19 changed your doctor appointments?

    My last check in was via telemed. It worked out fine. My next appointment is at the office. (unless I hear otherwise).  If I didn’t feel I need an adjustment to my DBS stimulator, then I could see doing another telemed appointment. We certainly enjoyed the fact that we didn’t have a 2 hour commute each way, an hour of which is spent on a commuter train.  We now have to decide whether to drive or go in on the train.  It’s not til July so we have some time.

     

  • patricia-b-wargo

    Member
    May 26, 2020 at 8:05 pm in reply to: Thoughts on States Reopening

    I agree with continuing to stay at home, but will be a much happier individual if I am able to see my grandchildren and reschedule some of the social activities with small groups, masks and distancing.  I’m willing to take  a risk with close friends and family.

  • patricia-b-wargo

    Member
    February 21, 2020 at 5:20 pm in reply to: Wondering About Azilect?

    I have been taking Azilect, and more recently, Rasagaline for 15 years with no ill effects or reactions to it. Yes, I have continued to eat cheeses with no problems occurring.  Since I had DBS surgery 5 years ago, I am down to taking meds 3 times per day as opposed to 5 times per day, with no wearing off as I’d been experiencing prior to the DBS.  The settings on the DBS are moderate and continue to be beneficial.  I consider myself fortunate to be maintaining as welll as I do, but I also attribute that to participating in Rock Steady Boxing classes and support groups for myself and my husband.

     

    Patty Wargo

     

     

  • patricia-b-wargo

    Member
    January 26, 2020 at 3:20 pm in reply to: Going on vacation with Parkinson’s

    We have a trip planned for the Fall for a river cruise in Europe. I am a little concerned about the amount of walking involved, but will take a cane and my walking sticks for negotiating the shore tours.  I have found that taking long flights (to New Zealand and Africa) require an aisle seat, so I can get up and stretch every hour or so.  Also if I have connecting flights, I request a wheel chair at the gate since there may be a long distance between domestic and international flights.

    In New Zealand, we visited family and did touring on our own. In Africa, we went on a photo safari which was done on land rovers, sitting most of the day. All of these major trips were taken after my diagnosis of PD.  One final note, take an ample supply of your medications with you as the country you’re visiting may not have your meds available.  this is especially important in case of emergency delays.

  • patricia-b-wargo

    Member
    January 26, 2020 at 3:01 pm in reply to: Hello everyone! I have an appointment with a Neurosurgeon.

    I had DBS surgery  4.5 years ago.  My experience was totally positive.  I was diagnosed with PD in September 2004 and had my DBS surgery in October 2015. The timing of DBS surgery should be considered  following a thorough discussion and treatment of your symptoms with both your neurologist and neurosurgeon.

    DBS surgery improved the following for me:  medication dosages were reduced from 5 to 3 times per day while eliminating the wearing off periods; tremors were gone; and the involuntary movements that were developing halted. Every 6 months my doctor, Dr. Tsao-Wei Liang, Jefferson University’s Movement Disorders Center of Excellence, makes any adjustments needed to address current PD symptoms.  Though not all symptoms are impacted by DBS, the surgery made it possible for me to improve some major symptoms, which affected my attitude and motivation to address the remaining existing symptoms.

    Whatever course of treatment you choose, I recommend educating yourself as much as you can about that treatment, asking questions of your doctor.  Prepare for each doctor’s visit with:  medication history, including physical and emotional reactions to any new or increased medications;  changes in physical symptoms, and address any emotional issues. When possible, your primary caregiver should accompany you to your appointments. I find my husband’s observations and participation in the discussion of my symptoms to be invaluable.

    Be sure to be well informed of your neurosurgeon’s experience with this surgery. Remember you are the consumer of their services and have the right to know as much as you can prior to surgery and what outcomes to expect.