JANUARY 2017 

 Dr. Jay Rao, MDS & Dr. Brian Copeland, MDS - LSU Dept. of Neurology

The following are notes transcribed at the meeting and are intended to be as accurate as possible for the informal Question and Answer session.  For any medical statements or recommendations, you should check with your doctor.

 

1. Orthostatic Hypertension (OH) in PD

Answer:  OH is a medical term for blood pressure drop when you stand or sit up. Possible interventions include increasing water or salt intake, compression stockings, smaller meals through the day. If these

don’t work, consider medications. One new drug is Northera which will raise the BP and can make people feel better. Check with your doctor.

 

2. What is a Movement Disorder Specialist?

Answer:  A Movement Disorder specialist is a Neurologist that is a Parkinson’s specialist vs regular neurologist.  All MDS are Neurologists.  All Neurologists are NOT MDS.

 

3. If Dystonia in the feet and toes has progressed to numbness in the feet and toes, what should a person do?

Answer: They should go to PD specialist. PD by itself does not cause numbness and tingling, except when the medication wears off.

 

4. Parkinson’s vs Lewy Body dementia – how is this determined?  Answer: This cannot be diagnosed from a blood test or MRI, but only on clinical examination and history. L.B. progresses much faster.

 

5. Loss of bladder control at night during sleep.

Answer: This is common in advanced age, but would need to be evaluated for an individual in a clinic visit to determine if underlying cause is present.

 

6. Are droopy eyelids a symptom of Parkinson’s?

Answer: This could be an indication of too little carbidopa-levodopa (Sinemet). May need to increase dosage.  Check with your doctor.

 

7. What is the status of stem cell research? Answer:  It’s still a big question mark. Dr.’s opinion is that it may not be ready for prime time.

8. Is there a Connection between Cymbalta and Essential Tremor?   Answer:  All medicines which are used as antidepressants have the potential to cause a tremor in someone who has not had it or to make an existing tremor worse.

 

9. Attendee is trying to get appointment with one of these two doctors speaking today and having difficulty. Give name and number to Bonnie for assistance.

 

10. Marijuana and Parkinson’s?  People are using it, but it cannot be prescribed in this state, because it is illegal. No opinion on effectiveness.

 

11. Question about a person diagnosed with Parkinson’s in Nicaragua.  Answer: There is no specific test for Parkinson’s. The DAT scan looks at the dopamine system in the brain. An abnormal scan is not a definitive test for Parkinson’s. Even Parkinson’s specialists are wrong

as much as 15% of the time.

 

12. Rytary vs. carbidopa–levodopa (Sinemet).

Answer:  Rytary is carbidopa–levodopa, but in an extended release form. You get a longer, smoother action. Sinemet works 2-3 hours, Rytary works about 4-8 hours and goes up and comes down more smoothly. It aims for slow, continuous release. There is a new Rytary extended release in the pipeline, but still in the future.

 

13. Questioner has had Parkinson’s for 4 years and the VA says it stems from Agent Orange in Vietnam.                                                                         Answer: Agent Orange does cause PD, but medical research doesn’t understand the mechanism. For a senior veteran, the Parkinson’s could be from another cause.

 

14. Can a blood test determine  whether the Parkinson’s is Genetic or from the environment?

Answer: Blood tests will tell you if it is genetic (only 5% of cases). If you are diagnosed with Parkinson’s beyond 55 or 60 years, it is not genetic. Below 40, that is a possibility.

 

 

15. If diagnosed young, does disease tend to progress faster?

Answer:  Dr. Rao says his experience is the opposite – the older you are when diagnosed, the faster it moves.

 

16. What about Exercise?

Answer: Exercise is fantastic. That is the only therapy which shows promise to slow the progression of the disease. Any exercise is good – including dance therapy, Rock Steady Boxing, etc.

 

17. What else does carbidopa-levodopa do for patients besides help with tremor?

Answer: It improves:

Brain function, dystonia at night, cramping.

Motor changes – tremor, slowness, stiffness

Non-motor symptoms - Attention, thinking, blood pressure, urinary or bowel functions, feeling bad, concentration – which sometimes affects people more than the motor symptoms! The effects of the medicine depend on the individual. Other symptoms, such as anxiety and mood changes, are not affected by this medicine as much.

 

18. Is it better to err on the side of taking too much medication vs too little medication?

Answer:  Your Dr. tries to aim for what suits the patient best, a good balance.  All patients are different.  Many people spend years without knowing what is wrong, so looking at the time from diagnosis is not

that helpful. The Dr. will give you an initial dose and see how it works, then adjust from there. If you have true Parkinson’s disease, the carbidopa–levodopa will show immediate beneficial effects. For other types of Parkinson’s disease, the effect may not be as dramatic.  Less meds is always better.

 

19. What causes “Freezing” ?

Answer:  Freezing or “Festination” is a feature of low dopamine. (Festination is an alteration in gait pattern characterized by a quickening and shortening of normal strides.)

 

 

20.  If a person has been on dopamine for four years, what would happen if they stopped?

Answer: Dr. Rao says you can do this, but if you do, when you go back on you may initially need to go to a higher dosage, and then back off.     If you have advanced disease, this is not recommended.

 

21. Does exercise affect dopamine production in the brain?

Answer:  No. The beneficial effect comes from other chemicals.

 

22. What if Insurance decides they are not covering the brand name drugs, but divert to generics?

Answer:  For most people, this is effective, but we do see instances where the brand name is more effective for some people.  Usually a “Medical Necessity” letter from your Doc will reverse their position for an individual.

 

23. What is happening in the brain with Parkinson’s?

Answer:  That is complicated.  Dopamine in the brain controls motion. Without it, it becomes difficult to do things which used to be automatic.

 

24. Stages of PD ?

Answer:  There are five stages of Parkinson’s.

(1) Mild symptoms, only one side of body affected

(2) Both sides affected. Needs no assistance with walking, etc.

(3) Requires use of cane, walker, symptoms escalating

(4) Use of Wheelchair, assistance with Daily Living - increase of meds.

(5) Clinical definition for advanced Parkinson’s would be when someone is unable to walk, having lots of motor symptoms, advanced mental issues, so dyskinetic that medicine doesn’t help.

 

 

Jayaraman Rao, MDS Neurology

Professor Emeritus, Neurology and Neuro

Dr. Copeland, MDS Neurology                                                                                            board-certified in both Neurology and Psychiatry

LSU Healthcare Network Clinic

3700 St. Charles Ave, 4th Floor New Orleans, LA 70115 Phone: (504) 412-1517

 

 FEBRUARY 2017

 

 BIG EASY FLEUR DE LIS PARKINSON’S SUPPORT GROUP                                                                                                                                                                                                                          February 20, 2017

IMPORTANT POINTS FROM THE MEETING:

·         If you are taking a carbidopa-levodopa medication, it is important that you avoid protein (meat, eggs, dairy products, protein bars, meal replacements, etc.) at least a half hour after medications. Protein foods interfere with the effective absorption of the medicine. Taking medication on an empty stomach -- 30 minutes before or 60 minutes after a meal – allows the drug to reach the small intestine and absorb faster. However, a carbohydrate snack (vegetables, crackers, toast, oatmeal, etc.) with the medication may help prevent nausea and does not cause problems.

·         Iron supplements can also decrease absorption of levodopa, so they should be separated from medications by at least two hours.

·         If you believe a medication would be valuable to you and you’ve “heard that it is very expensive”, ask your pharmacist to price what the drug would cost you before you make a decision. Also ask your Dr. for free samples to determine if it is beneficial and if there are any plans to help with the costs.

Minutes

1.   Opening Prayer

2.     Welcome to new members. Request to complete “Member Profile” for anyone who might not have.

3.   Meeting Days                                                                                                                                                                       The May meeting will be held on May 22nd due to Memorial Day falling on May 29th ! The rest of 2017 will again be on the last Monday of each month: March 27, April 24, May 22, June 26, July 31,  Aug 28, Sept 25, Oct 30, Nov 27, No meeting in Dec.  Cards with dates are on table.  

4.     Thanks to those who provided food. Thanks to the Goodwynes, the McClelands & our generous vendors. Ann Gardner, who helps with food, is recovering from surgery this week.  We wish her a healthy recovery!

 

5.     Projects:

a.     Need a Chairman for the 501-C3 team (to generate an application for a tax exempt number). The Big Easy is applying for tax exempt status to receive tax free donations to further our work.  Dr. Copeland is helping with the formative paperwork.

b.     Advocates for PD Team – the group which will be going to Doctor’s offices, hospitals, assisted living, home health care agencies to represent the needs of Parkinson’s patients. Meeting will be March 8th at 10:30 am at Christ the King Lutheran Church in Kenner.

c.      Advisory team Meeting to follow at 11:30 am.

   d. Need a CHAIRMAN  for Golf Tournament to benefit Big Easy PD                                   Advocate efforts, scheduled for April 28th at Ormond Estates.

   e. Recommendations for Help in the community:

Mover: Joe Craft @ 258-2827

Sitter: Michelle Bogran @ 258-0725  $12/hr. Meals, lt. housekeeping.

Home Care: Call Kathleen Puglia @486-1024 for referral.

Club 70 –provide volunteers to give caregivers a break.  A project of            Dr. Kiran Zaveri    contact:  < >

6.     Bonnie discussed the material in the book on the back table available to all attendees to read.  You may ask for copies of articles you need.  The “Lending Library” is also on table. Sign your name, enjoy the book, return to Group.

7.     The PD Patient Advocates will seek opportunities to talk to Doctors and Nurses and medical personnel. Many medical professionals are not fully in tune with the special needs of PD patients in the hospital.

   Some of these concerns listed by our Advocacy Team so far are:

a.     Parkinson’s medications.

§  Timing and dosage is critical. Describe, in writing, when meds are to be taken and when meals are to be eaten.

§  *When you go to hospital, have a complete meds list, including supplements, including dosage and when last taken.

§  *List all allergies in red.

§  *List any med’s which are contraindicated. Print the list of those which should not be taken with PD meds.

§  Patients should bring meds to hospital and coordinate with doctor and staff. A hospital pharmacy may not stock all the meds you need.  Parkinson meds cannot be substituted!!

§  Get a note from the Dr. to allow you to manage your own meds. Keep a copy of the doctor’s letter with you.

§  Ensure that post-op orders include when you resume PD med’s

§  Have critical documents scanned into your records.

§  Put this into a computer file, if possible, for easy changes and updates.

b.     Diet

·  May need to bring your own food.

·  Certain foods interact with the meds - protein, etc. These dietary restrictions must be followed.

 

8.     Demo of Calibrace – This is the first back brace for Parkinson’s patients to help hold the shoulders back and avoid stooping. Insurance should cover it.  When you order it, the company will send a form to your Doctor to get it approved. Helps relieve the fear of falling. Company number is  855-379-6283  for information. (Kim Bronson usually answers.)                                                                                  Website: https://parkinsonsnewstoday.com/2015/10/07/improving-             quality-life-people-parkinsons-calibrace-back-brace/ 

9.     Discussion of personal success from DBS (Deep Brain Stimulation).

 

 

 

SPEAKER FOR TODAY DID NOT SHOW – WE CAN NO LONGER RECOMMEND  Casso’s Wellness Store & Gym.

 

 

 

 

 

10.      PD 101 – “Tips and Tricks” -- This time of the meeting is an opportunity for attendees to share their knowledge and experiences.

·        Freezing – what do you do? How to prevent falls. There is a phone app which has a metronome sound. (One is Beats Medical smartphone application - https://www.beatsmedical.com/ )

·        Doorways – PD perception changes when you have to go through a doorway.  May cause imbalance or freezing – just be aware.

·        Protein – Avoid protein at least half an hour after meds (carbidopa-levodopa) if you take the medicine on an empty stomach. Do not eat a protein mean with thirty minutes after taking meds.  

·        Writing – Manuscript paper (ruled paper like you used in school) can help train your brain to write larger. Bonnie passed out practice sheets.

 More Tips & Tricks & Questions:

·        Book at the back of the room and the website has information on useful tips and items and where to get them.

·        If you are taking pills which have food restrictions, like carbidopa –levodopa or thyroid, one member takes one of the pills when she gets up at night to go to bathroom, away from any meals with protein. The important distinction is protein foods. Also, avoid a high protein diet with carbidopa-levodopa meds.

·        Dopamine agonists are a different class of drugs from levodopa and are often the first medication prescribed to treat PD. They are also used in the later stages with carbidopa /levodopa. They include the Neupro-patch, Requip, Apokyn, and Mirapex. They do not carry the protein restrictions.

·        Question was asked for tips for caregivers who have to help their partner get out of bed or out of a chair. What is a system to protect the back?

o   You could give medicine to the patient in advance (up to 30-40 min to take effect) to improve movement. Suggested they might set an alarm and take medicine earlier.

o   Tell the partner to move on the count of 3, so they are moving together.

o   U-haul makes a strap which goes around both to help get up. Straps are about $20 at U-Haul.

o   There is a pole which can be put by the bed or the toilet and has a triangle on it. (Not working for the speaker to help a person to get out of bed – but good for bathroom.) The speaker ordered a ‘ladder’ – about 6’ long with webbing and hung it on the trapeze. Can sometimes pull up on that.

11.              Mike Penn is a P.T. that does installation of grab bars in bath and shower.                                              (504) 450-1480

12.              New VA Hospital is open and one attendee received very good treatment.                                               Go to VA and get in contact with the patient advocate to get information on                     benefits. Use the DAV (Disabled American Veterans).

13.             Testimony for Rytary, over Sinemet. This drug provided a significant             improvement in symptom management. Both drugs are carbidopa-      levodopa, but the Rytary is time release. Evened out the symptoms, but        expensive. NOTE: Even if you hear a drug is expensive, ask the pharmacist how much it would cost you. And shop around, if you need it. One attendee       asked and found that the drug was affordable, for them.

 

EXCELLENT LIST OF DIFFERENT PARKINSON’S INFORMATION RESOURCES

https://pdadvocates.com/Resources

 

 

 

 

 

 

Respectfully Submitted, Martha Good

 

2-28-17