Peggy Roberge, BSN, Clinical Nurse Coordinator, PADRECC
Parkinson’s Disease Research Education & Clinical Center (PADRECC)
Address: Hunter Holmes McGuire VAMC,
1201 Broad Rock Blvd., Richmond, VA 23249
PADRECC is part of the Veterans Affairs (VA) system. There are several in the U.S. and they are set up as centers for clinical care and research that treat all types of movement disorders such as Parkinson’s Disease, Essential Tremor, Dystonia and Atypical Parkinsonian Disorders. Peggy suggested that people living with PD see a movement disorder specialist at least once a year. Your general neurologist will appreciate the extra feedback because they can take more time with each patient, and can make better adjustments with your medications. Georgetown University Hospital’s Movement Disorders Clinic has a satellite office in Vienna.
If you are a veteran, you can go to their center. PD comes under ‘catastrophic’ so you can attend even if you’re not a veteran.
More information about the services they offer, how to get an appointment and research opportunities are available on their website at www.parkinsons.va.gov.
Symposium – Saturday, October 13, 2012
At: Sheraton Richmond Park South Hotel
9901 Midlothian Turnpike, Richmond, VA 23235
For people & families living with Parkinson’s Disease. Educational sessions, exhibits & networking. Includes light breakfast, lunch and afternoon refreshments. For more information and to register go to http://tinyurl.com/2012PDday
Peggy had copies of the latest issue of PADRECC News, the newsletter for Southeast PADDREC, where she works. Some of the tips she gave like the voice exercises and how to stay hydrated are included. I also learned about My HealtheVet, an online Personal Health Record (www.myhealth.va.gov). If you missed out on a copy you can read it and other previous issues at www.parkinsons.va.gov/Richmond/Newsletters.asp
Peggy left a number of brochures which are available online at www.parkinsons.va.gov/patients.asp.
Titles are: Exercise & Physical Activity, Fall Prevention, Medications, Motor Symptoms, Non-Motor Symptoms, and Agent Orange.
VA Caregiver Support – www.caregiver.va.gov
Offers the following services:
caregiver support line, caregiver support coordinator, adult day health care centers, home-based primary care, skilled home care, homemaker and home health aide program, home telehealth, respite care and home hospice care.
If you’ve been exposed to Agent Orange, you must go to the VA.
Some useful websites are:
www.publichealth.va.gov/exposures/agentorange – Agent Orange website
www.ebenefits.va.gov – VA benefits
www.va.gov – Dept. of Veterans Affairs
Eye movement research
This research began when it was found that they were able to define tremor in the eyes of pilots. PD has a different tremor from all other tremors. The results of this study were published online on 4/9/12 in the Archives of Neurology. The journal article title is Pervasive Ocular Tremor in Patients with Parkinson Disease and the authors are George T. Gitchel, MS, Mark S. Baron, MD (PADRECC staff) and Paul A. Wetzel, PhD (Virginia Commonwealth University).
Average age for PD is coming down
and is now 45 years old. This is possibly due to environmental factors but there is also a connection with traumatic brain injury.
Only a small proportion of people absolutely have to take their medications on an empty subject. If you’re going to eat high protein it is best to eat it at night. 80% of PD patients cannot take medications without food because they get nauseous.
You should have an effect from your medications within 15 minutes to 30 minutes maximum.
Neupro, a once a day patch is now available. If you can bypass the stomach with any drug it will be more effective.
Apokyn is an injectable medication. The dose is only rarely changed and it is the only drug a PD patient can take whenever they need it. (5 times a day, every 2 hours) It is a dopamine agonist for people who experience extreme off periods and will assist when it’s not time to take your other medications. An Apokyn pump may soon be available.
When you’re stressed you can go through Sinemet much quicker. Too much Sinemet can lead to dyskinesias.
Be sure that your neurologist will call you back when you need to talk to them. Peggy gave an example of someone who was hallucinating and suggested that he/she should be able to talk to his/her neurologist quickly because the neurologist may need to prescribe a lower dose.
There are a limited number of drugs that are helpful to PD and your neurologist should be familiar with all of them, including the newer ones (e.g. Neupro, Apokyn)
Compulsive behavior can be caused by medications. Be aware of changes in behavior.
The FDA says there’s a possible risk of heart failure. If your legs are swollen, it can be caused by Mirapex or Requip. Swelling has gone down when medications are reduced. Swelling can cause clots and cellulitis.
Click here to read the MedWatch safety alert, including a link to the FDA Safety Communication.
Where there are speech problems, there are swallowing difficulties.
These 2 exercises are used by opera singers and will help you to speak louder:
First, place fingers lightly on your throat so you can feel the muscles when you speak.
1) Say “Ahh” loudly going from low to high and then high to low
2) Shout out the vowels A, E, I, O and U.
There’s so much you can’t control with PD so work on the things you can control (like these exercises).
Keep your voice as long as you can because you don’t want someone else talking for you.
If you can’t hear someone try this cue – place your finger behind your ear.
If you’re having swallowing problems, start thinking about having a percutaneous endoscopic gastrostomy (PEG) inserted.
People living with PD (PLWPD) should drink 5 regular (16 oz?) bottles of water a day because they use up more energy and lose 3 times the amount of fluid as compared to people who don’t have PD. Not drinking enough water can lead to constipation, affect your metabolism and decrease energy but when you’re well-hydrated your medications will work better. If the bigger bottles are too intimidating, then use the smaller ones.
The only reasons for dehydration are diarrhea and vomiting so be sure to drink plenty of water.
Sports drinks will help to replace electrolytes that are lost from drinking a lot of water. Drink 1-2 16 oz. bottles of sports drink daily provided you’re not diabetic.
Drink a bottle of water every time you take your medications.
Stop drinking water after 7 pm so you’re not up all night.
Peggy asked how many people had been referred to a rehab doctor or physiatrist. A rehab doctor is different from a physical therapist. Every year a PD patient should be evaluated by a rehab doctor.
With a rehab doctor, every modality is personalized. A rehab doctor will tell the physical therapists the specifics of what you need.
Walking assist devices
The folding reciprocal silver walker is not recommended for people living with PD because when you lift it up to move it forward, it breaks up your stride. Also, if you freeze with this type of walker, you may fall because you need to move it in order to move forward.
The rolling walkers with 4 wheels are recommended because they allow you to stride when you walk.
Make sure your cane is adjustable. It should be high enough so that your hand is at your hip with just a slight bend in elbow. Do not use 4 pronged canes (they’re for people who’ve had a stroke).
Use a walker or a cane when you can’t walk a distance. Walkers are for when your legs get so tired you might fall or you have balance issues.
With PD there is a tendency to walk bent over and the arms don’t swing.
Try this as you walk . . . Repeat to yourself, “Look up, step up!”
Swinging your arms helps to give you balance.
Time exercise and physical therapy for when your medications are at their peak.
Best exercise is aqua therapy, because you’re not fighting gravity.
Avoid the treadmill but do lots of walking.
It’s imperative you talk to your doctor if you’re having trouble sleeping. When you’re deprived of sleep it affects PD (symptoms are worse) and also other members of your family. Ambien is not recommended as it can lag over into the next day. When taking “sleepers”, it is really important to take them for 7-10 days straight so it sets your internal clock. Once you’ve set it, then you can change the routine.
The form provided by PADRECC, Critical Information for Caring for the Parkinson’s Patient is an educational piece for medical professionals where you can list your medications, doses, the times you take your medications, off times, etc., as well as which drugs you cannot take.
If you’re not getting your medications on time you need to make it clear to the attending medical professionals how important it is to have them on time. If the ER doctor will not cooperate, then have them call your neurologist.
It takes a while for dopamine receptors to get used to the change when your usual schedule is disrupted and then again when you go back on your regular schedule.
Ciprofloxacin or Cipro (an antibiotic) is not compatible with PD medications but the doctor can prescribe another antibiotic.
To avoid urinary tract infections, take high-potency cranberry pills but do not take cranberry if you’re on blood thinners.
It’s very hard to gain weight back when you lose it. A nutritionist suggested making a milkshake with Carnation Breakfast powder or drink and adding ice cream. The nutrients in the Carnation product are better than Ensure and Boost (compare the labels), and cheaper. You could have the milkshakes between lunch and dinner, and again before bed. If you’ve lost between 15 & 20 lbs in the last year, you’ll need to put the weight back on because if you go to hospital you’re very likely to lose weight there.
Unavailability of medications
The military doesn’t carry some medications like Azilect. Contact your Congressional representative for help. Faxes may be more effective than email or snail mail.
If you’re freezing, it could require an adjustment in medications – it depends on when you’re freezing. If you’re freezing, your carepartner can shout or stomp with cane to startle you and get you moving again. Canes with a laser light to provide the cue can help but may not work after a while.
can be related to not drinking enough water. Your doctor may need to decrease your medications.
Extended release (ER) medications
Extender drugs work best if you have a perfect system. With a sluggish bowel or motility, extenders may not work well because it’s hard to know when they’re getting into the digestive system.