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It’s National Family Caregivers Month-Here are some thoughts!

CarePartner/Caregiver Appreciation

Those of us living with Parkinson’s disease and have a caregiver or care partner to assist us, may overlook or take our helpers for granted. Take the time to show your love and gratitude for all that your caregivers do for you. Show your support and make them aware of your appreciation and the changes that they make in your life. This is a thank you to all those selfless people who make life easier for those who need assistance.

 

Here are some tips for you and your carepartner/caregiver:

  • Caring-Taking care of another can be a rewarding and spiritual adventure that can bring our relationships closer. In any relationship, there are caregiving challenges that will require patience, understanding, compassion, empathy, and possibly, even more patience.
  • Stay Vigilant-You, the caregiver, are the cheerleader, coach, and trainer, all in one, for a team that may or may not show up. It is your responsibility, as a caring helper to be observant and to ensure that you not over tax yourself. You must see that you take respites and time for self-refreshment.
  • Appreciation-My wife, Angela, is the most caring, most selfless, most generous, and most thoughtful person that I have ever met. Acknowledge and do your best in thanking those making a difference in your life. It’s so vital that those caring for us know that they are valued.
  • Limits-If carepartners fail to monitor and maintain their own health, it is vital that those who care about them step up and say something.
  • Watch for Burnout-Continuously caring for another takes a toll on body, mind, and spirit. If a caregiver overextends themselves, they are likely to face health, sleep, and stress related illnesses.
  • Self-Care-Caretaking for yourself, even for a small part of your day can be calming, centering and help to keep you healthy. Keeping your identity and getting time for yourself is a health must for you and those around you. Just a few minutes a day can rejuvenate the entire body.
  • Taking Your Time-Pay close attention to any changes in how you interact and communicate. If you find yourself on edge, quick to react, and overly sensitive or emotional, take a few moments to scan yourself and the situation. Just finding a quiet spot like an office nook to try some deep relaxing breathing may quiet things down.
  • Knowing your Limits-This requires knowing one’s self. Monitoring your condition is as important as the patient’s status. As a team, if the caregiver can function well, the patient sees those benefits as well. Taking care of yourself is the best gift that you can give to those that you love.

It’s hard to take care of others well, if you aren’t well. Take care of yourself and thank you!

5 Tips Parkinson’s Patients Should Know

Nutrition matters

Summer color and flavor

Last week, I had the opportunity to speak to a wonderful audience with Parkinson’s and their care partners, in eastern Virginia. It was a marvelous exchange of information and emotions. Parkinson’s disease comes with so many unwritten rules. Trying to find all that you need to know about this illness, all in one place, may be frustrating to collect. There is so much to remember and so much that you might forget. Staying on top of Parkinson’s disease, symptoms, medications, and health maintenance, is a full-time job!

The following are 5 pieces of knowledge that you will want to remember:

  1. Is your neurologist a movement disorder specialist? If you have Parkinson’s disease and your neurologist isn’t a movement disorder specialist, you may want to see if there is one in your area. Movement Disorder Specialists complete extended training to focus on neurological disorders like Parkinson’s disease.

  2. If you are taking antibiotics, your medication’s effectiveness may be hindered dramatically. I can speak from experience that after taking antibiotics for my tooth infection, I saw a huge decline in the efficacy of my daily regimen of Parkinson’s medications.

  3. Don’t forget that if you are on Sinemet and you are protein-sensitive (protein in your diet may interact with your Levodopa), protein may decrease the full benefit of your dose. You may want try taking your protein later in the day or evening. Timing your medications for optimal benefit is part science, part art, and part luck.

  4. When I am able to lower my stress level, I have found that medications work better, I feel calmer and more peaceful, and see less of my symptoms.

  5. Eat smart and healthy! Talk to your doctor about how to improve your gut health.

Something to consider for National Caregivers’ Month!

PD Tulip!

PD Tulip!

It’s National Caregivers’ Month–in honor, I am recycling one of my oldie but goodies! I hope it helps! This is a gentle reminder to all the selfless caregivers (I prefer the term carepartner), carepartners, doctors, nurses, orderlies, therapists, speech pathologists, social workers, and anyone who comes in contact with people touched by a neurological illness. Remember these 5 important points before you react, speak, take offense, lose your temper, or give up:

Everyone has a history and a story. The person who you are dealing with now has had and may still have a very full life that you only see a portion. Give them the credit and respect that they are due.

-The current state of the patient that you are seeing doesn’t need more stress, tension, or conflict in their lives, working together you both can make life better for the patient– and not worse.

-Give your loved one or patient flexibility and deal with them creatively and with an open mind. If they aren’t responding to medications, offer music therapy, complementary therapies, or seek a personal solution which motivates the patient. There is a need for gentleness and understanding.
-The person with whom you are interacting may have done some important things in their life: raised a family, changed many lives, and been far more active than they are now. Their current condition is not by choice. Show compassion, patience, caring, and generosity. Remaining centered, patient, and mindful is good for both patient and carepartner.

-A mutual respect and understanding is crucial for needs to be met and for the caregiver/carepartner to be appreciated.
-Someday, in the not so distant future, you or someone who you care deeply for, could be facing health challenges.

My Wife-Angela Robb, Recognized As A Champion of Change!

UPDATE!

Just in case you missed it, here is the video link to the Champions of Change for Parkinson’s disease.

The event was held at the White House.

Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney.

White House Champions of Change for Parkinson's Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney
Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney

 

What a smile! Angela Robb A Champion of Change!

What a smile! Angela Robb A Champion of Change!

As we near April and Parkinson’s Disease Awareness Month, I would like to publicly thank and recognize the carepartners and caregivers who make our lives better. The carepartner/caregiver can be a tiring and sometimes thankless task.

To my wife, best friend, partner, carepartner, and true love, Angela, I congratulate you on being honored and recognized at the White House as a Champion of Change. I am so proud of you –today and everyday! I am so grateful to be in this life with you by my side! I am so happy that everyone, besides me, sees just how amazing you are!

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