Dear Fellow Members…Thanks for the Support

What I really enjoy about our group is that it truly is a “support ” group ready to share knowledge, information, ideas and tricks they’ve  learned along the way with each other.  its easy, over time, to become more of a speakers’ bureau but when ours leaned a bit too far in that direction, members chose to keep the “support” element strong.  So we are trying to find balance.

When any one of us havs questions, the membership really takes the time and attention  necessary to help.  Since our last meeting, a letter from a member asked about Rytary and possible side effects.  She thought she was experiencing something odd and was wondering if her new medicine was responsible.  Advice and answers follow :

Member 1:

I’ve been on Rytary approx. one month w/o any particular side effects except for dry mouth……..which is not at all worrisome! In fact its cured my “crocked toe” syndrome…….which was not only very annoying but at times a bit painful.
So………one might say its working well for me! Since it seems I’ll be on this drug for awhile……Now all I need to do it get the outrageous cost down from $100 a month…….a bit pricey but, I’m worth it!

Member 2:

I don’t know if you’d call this a side effect so much as a dosage issue, but there’s a wide variability on what Rytary actually does to me with any given dose. About half the time it works perfectly and is far superior to Sinemet, some of the time almost nothing happens and it’s like the pill has gone into a black hole, and some of the time I get some significant dyskinesia.

You can forward my email on to the questioner and tell her I’d be happy to talk to her further if that would help.

Member 3:

I found no side effects. I am still taking the Rytary.

Member 4:

Appointment with [my neurologist] today and I know trying Rytary again is going to come up. Any thoughts on your experience you’d care to Share? I’m mixed on it. Sinemet dosage is every 2.45 hours but I am overall doing well on it.
Member 5:

I have taken Rytary for a year or more. I’m OK with it. But it does take about 45 minutes to kick in.

Member 6:

This is an excellent question. You know I quit after a short, overdosed trial period. [my neurologist]wants to put me on Rytary next visit, in a week or so. I am leery due to past experience. He says, I will be at a much lower dose. So I am very interested in feedback from people who have been on it awhile. I know [a couple members] both said they felt better in a matter of days. [One] told me last meeting she has no side effects and it works well for her. [Another] ,is still adjusting to both frequent med changes and the disease itself. I haven’t asked in a while how you’re doing on Rytary.

Member 7:

And, yes, I have been on  Rytary for about a year but have only felt settled into it over the last 3 or 4 months.  When it works ,its great, but to me, its a bit inconsistent. On some days, I feel like it just doesn’t kick on at all..  I suspect its sensitive to my diet, schedule, and stress level.

I had an appointment with my neurologist this week so I posed a couple questions on this topic. I asked him,
” What kind of strange or unusual side effects do you see with people on Rytary?”  He replied that since it was the same medicine as Sinemet, just a different delivery system,  there were no unusual side effects.”  So I followed up with something I’d heard repeated, “But, isn’t it true that more women have trouble with it than men? No, he said, in fact he’s seen the opposite in his practice.

So, the member who first asked the question is grateful for your responses.  She feels that its unlikely  that Rytary is responsible for her latest complaint but will follow up with her neurologist .

And, finally, this: Sent along by one of our own,  a chance to help with some research on Rytary.
I’m on the Michael J F ox Foundation  Patient CouncilThe Foundation developed the survey below about Rytary and has asked us to forward to interested people and groups. I don’t know if you want to forward it on to the WWPD members, and there’s no expectation or pressure from me that you do. Just thought I’d give you the opportunity.

From the Michael J Fox Foundation, a chance to speak up.:

Have you been prescribed Rytary to help manage your Parkinson’s disease symptoms?  If so, you can help inform MJFF’s research funding, educational endeavors and public policy efforts.

Take our anonymous 10-minute survey about your experience and overall satisfaction with Rytary. The results of the survey will be used to better understand the benefits, side effects and any challenges associated with the drug.

TAKE THE SURVEY

Never heard of Rytary but want to know more? Visit our website to learn about this and other recently approved therapies to treat Parkinson’s disease symptoms.

Speech and Yoga

SPEECH AND YOGA

Summary of Presentation by Melanie-Joy Dorn, Speech-Language-Pathologist,Fair Oaks Hospital to the Women with Parkinson’s Disease, September 6, 2016.
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It was a small but lively, upbeat group of women who showed up for the first of our programs. Our special guest for month was well-known and respected Speech-Language Pathologist Melanie-Joy Dorn. Ms. Dorn has been employed by the INOVA Health System for 15 years. Fortunately for us, she has put a new focus in her work, people who live with Parkinson’s Disease.She leads a Communication class through the PFNCA, teaches the LSVT Loud class and Vocal Yoga.

Ms. Dorn came to speak to the group on a subject we have not addressed, issues concerning voice volume and strength and keeping our vocal cords strong. As a yoga coach, she also talked to us about a program she runs called Vocal Yoga.

As a yoga instructor and speech pathologist, Ms. Dorn looked for a connection between her two interests. It is, she found, to be in our breath. Deep breathing benefits everyone who practices it.Taking a deep breath helps you use the extra effort your voice needs to be heard. Other benefits:

  • Makes you calmer
  • Helps to detoxify the body
  • Gives you energy
  • Lowers blood pressure
  • Relieves pain
  • Makes you happier
  • Stimulates the emphatic system
  • Improves digestion
  • Increases cardiovascular capacity

The Vocal Yoga class combines Vinyasa Yoga deep breathing, deep breathing and vocalizations to help keep event,a strong voice. I was able to participate in a demonstration of the class at  the PFCNA Walk off Parkinson’s event last Sunday, September 18th.  Although I felt self-conscious doing the vocalizations as walk participants walked or stood by, I can see how they can help improve our throat and voice strength..

During a Q & A session, someone asked about swallowing and choking. Ms. Dorn suggests small bites and explained how your throat works to prevent aspiration. She said that if you have difficulty swallowing to try bending your head down with chin toward chest to make it easier to swallow.

Ms. Dorn was gracious enough to leave us extra handouts. She also has a website , blueharmonyyoga.com which contains this information and so much more. Check it out! She also left me with copies of her handouts and business cards so if you’d like one of those, let me know.
Parkinson’s Disease disrupts your own feedback. This information was in reply to one member who noticed  family and friends had trouble hearing her. Parkinson’s disease makes you think you are speaking loud enough when in fact you are speaking too softly. Since you can’t rely on your own feedback. It’s much better to rely on the reactions of others. Your voice should be at the level of 75-85 decibels. Practicing long loud “ah” or reading aloud in a loud clear voice is necessary. This is where the LSVT Loud program can really help. One member mentioned that she’d gone through the Loud program but felt she needed it again. Ms. Dorn replied that the benefits of the Loud program last around 18-24 months, getting updated on the techniques is suggested .

If you missed the program and either want more information, please ask for the materials or check her website blueharmonyyoga.com. Comments and questions are always welcome.

As requested by the group last spring, there is no speaker next month and I continue to work on the driving and travel independence issues for November.

Thanks again Ms. Dorn for an enjoyable and educational program.

Nilotinib – An Encouraging Move

Donna called me this morning with more on the progression of nilotinib research to PD treatment.  Nilotinib is currently used for chronic myelogenous leukemia , a cancer of the white blood cells and early studies showed it as promising,  Now, Georgetown University and its researchers announced there will be a collaberation between the Michael J. Fox Foundation, the Van Andel Research Institute in Michigan and the Cure Parkinson’s Trust in the UK to assess clinical usage and development of nilotinib as a PD treatment.  One of the team’s goals is plan a double-blind , placebo-controlled clinical trial.

The Michael J. Fox Foundation had a webinar on the topic on August 2nd.  Check the MJFF website to see if that program is still available to listen to online.  It looks like many can. There is also more information about how the nilotinib helps those  who suffer from Parkinson’s Disease.

Anyone want to share more information?  Thanks, Donna.

Progress to Report on nilotinib

I’m trying hard to get back into fighting shape after a summer that left little time for it.

Have you wondered, as I have, what the progress is on any of the new “miracle treatments” for Parkinson’s?  I’m not one to sit at the computer for long periods every day checking for new research.  So I love it when progress comes to me, as it did last Monday at the Parkinson’s Cafe (on Pender Drive in Fairfax, but that is for another day).  Our Eleanor, came up to me with some information on the drug, niloginib, an FDA-approved drug for leukemia which is being tested for possible usage with Parkinson’s patients.  A tip of the hat and full acknowledgement for this article by Nancy Robertson, published and/or released by the Georgetown University Medical Center on October 17, 2015.

OCTOBER 17, 2015 – An FDA-approved drug for leukemia improved cognition, motor skills and non-motor function in patients with Parkinson’s disease and Lewy body dementia in a small clinical trial, say researchers at Georgetown University Medical Center (GUMC).

The drug, nilotinib (known as Tasigna® by Novartis) also led to statistically significant and encouraging changes in toxic proteins linked to disease progression.

The study’s findings were presented at Neuroscience 2015, the annual meeting of the Society for Neuroscience, in Chicago on Oct. 17.

Charbel Moussa, MD, PhD, who directs Georgetown’s Laboratory of Dementia and Parkinsonism, conducted the preclinical research that led to the discovery of nilotinib for the treatment of neurodegenerative diseases.

WALKING AGAIN

To conduct the clinical study, he partnered with Fernando Pagan, MD, a GUMC associate professor of neurology who directs the Movement Disorders Program at MedStar Georgetown University Hospital.

“To my knowledge, this study represents the first time a therapy appears to reverse – to a greater or lesser degree depending on stage of disease – cognitive and motor decline in patients with these neurodegenerative disorders,” says Pagan. “But it is critical to conduct larger and more comprehensive studies before determining the drug’s true impact.”

The investigators report that one individual confined to a wheelchair was able to walk again and that three others who could not speak were able to hold conversations.

Pagan notes there was no control group for comparison in the study, and that the drug was not compared with a placebo or other medications used to treat Parkinson’s.

SAFETY TEST

But the researchers report that during use of the medication by the participants, production of dopamine increased in many patients, requiring doses of L-dopa and other dopamine-sparing drugs used to treat Parkinson’s to be lowered or stopped.

Stopping nilotinib treatment appears to lead to cognitive and motor decline despite reinstating L-dopa therapies.

The study’s primary objective was to test safety.

“The use of nilotinib in doses much smaller than are used to treat cancer, which is up to 800 mg daily, was well tolerated with no serious side effects,” Pagan explains. “The dose used in this study was 150 and 300 mg daily.”

The researchers also found that the drug penetrates the blood-brain barrier in amounts greater than dopamine drugs.

The observed efficacy in cognition, motor skills and non-motor function improvement (such as constipation) for many patients was the most dramatic result, Pagan notes.

“Study participants with earlier stage disease responded best, as did those diagnosed with Lewy body dementia, often described as a combination of Parkinson’s and Alzheimer’s diseases,” he says.

LIFE-CHANGING IMPROVEMENT

Alan Hoffman, a professor emeritus of social science education at Georgia State University, was diagnosed with Parkinson’s disease in 1997. He says he participated in several clinical trials with no benefit until he enrolled in Pagan’s study.

“Before the nilotinib, I did almost nothing around the house,” he says. “Now, I empty the garbage, unload the dishwasher, load the washer and the dryer, set the table, even take responsibility for grilling.”

In the three weeks prior to enrolling in the study, Hoffman says he fell eight times, but he only fell once during six months on the study. His speech has improved, as has his thinking.

“My wife says it’s life-changing for her and for my children and grandchildren,” Hoffman says. “To say that nilotinib has made a change in our lives is a huge understatement.”

TRANSLATIONAL SUCCESS

Moussa, an inventor on a Georgetown University patent application for nilotinib and other similar drugs for neurodegenerative diseases, notes that the research went to clinical trials only two years after his initial discovery.

He first set out to find approved cancer drugs that could penetrate the blood-brain barrier and turn on the “garbage disposal machinery” inside neurons to clear toxic intracellular proteins and prevent their accumulation within, or secretion outside of, brain cells.

“A lot of institutions talk about expediting the translation of research from the lab to the bedside, but it doesn’t happen quickly very often,” Moussa says. “This is a solid example of how that is possible and why it is so important.”

PATIENTS CONTINUE TREATMENT

Hoffman and other patients in the clinical trial can continue taking nilotinib as part of an expanded access study. Georgetown researchers are now planning larger clinical trials with nilotinib for patients with Parkinson’s and other similar diseases including Alzheimer’s disease, likely to begin in 2016.

The phase I study received philanthropic funding and was supported by the Georgetown-Howard Universities Center for Clinical and Translational Science.

Co-authors of the study represent the MedStar Georgetown Movement Disorders Program, GUMC’s Translational Neurotherapeutics Program and the Laboratory for Dementia and Parkinsonism, and the Georgetown-Howard Universities Center for Clinical and Translational Science Clinical Research Unit.

Nancy Robertson

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This got me excited to see what else is happening with the testing of this drug.  I found another Georgetown University Medical Center article updating the progress just a few weeks ago on July 11th.  Written by Karen Teber, it is entitled, ” STUDY: CANCER DRUG RESTORES BRAIN DOPAMINE, REDUCES TOXIC PROTEINS IN PARKINSON, DEMENTIA

WASHINGTON (July 11, 2016) — A small phase I study provides molecular evidence that an FDA-approved drug for leukemia significantly increased brain dopamine and reduced toxic proteins linked to disease progression in patients with Parkinson’s disease or dementia with Lewy bodies. Dopamine is the brain chemical (neurotransmitter) lost as a result of death of dopamine-producing neurons in these neurodegenerative diseases.

Researchers from Georgetown University Medical Center (GUMC), say the findings, described in the Journal of Parkinson’s Disease, support improved clinical outcomes observed and first reported at the Society for Neuroscience annual meeting in October 2015.

The study tested nilotinib taken daily for six months. A much smaller dose of nilotinib (150 or 300 mg once daily) was used compared to the dose for chronic myelogenous leukemia (300-400 mg twice daily). Twelve patients were enrolled in the clinical trial — one patient withdrew due to an adverse event. Researchers say the drug appears to be safe and well tolerated in the remaining 11 participants who completed the study.

In addition to safety, the researchers also examined biological markers in the blood and cerebral spinal fluid as well as cognitive, motor and non-motor improvement. They found significant signs that nilotinib may provide benefit for patients with these neurodegenerative diseases.

“These results need to be viewed with caution and further validated in larger placebo controlled trials, because this study was small, the patients were very different from each other, and there was no placebo,” says the study’s senior investigator, Charbel Moussa, MD, PhD, scientific and clinical research director of the GUMC Translational Neurotherapeutics Program (pictured right).

Among the biomarker findings were that:

The level of the dopamine metabolite homovanillic acid — an indicator that dopamine is being produced — steadily doubled, even with the loss of most dopamine neurons. Most study participants were able to stop using, or reduce their use of, dopamine replacement therapies;
The level of the Parkinson’s related oxidative stress marker DJ-1 — an indicator that dopamine-producing neurons are dying — was reduced more than 50 percent after niltonib treatment; and
The levels of cell death markers (NSE, S100B and tau) were significantly reduced in cerebrospinal fluid (CSF) suggesting reduced neuronal cell death.
In addition, Moussa adds that it appears nilotinib attenuated the loss of CSF alpha-synuclein, a toxic protein that accumulates within neurons, resulting in reduced CSF levels in both Parkinson’s disease and dementia with Lewy bodies.

The researchers also said that all 11 patients who tolerated the drug reported meaningful clinical improvements. All patients were at mid-advanced stages of Parkinsonism and they all had mild to severe cognitive impairment.

“Patients progressively improved in motor and cognitive functions as long as they were on the drug — despite the decreased use of dopamine replacement therapies in those participants with Parkinson’s and dementia with Lewy bodies,” says the study’s lead author, Fernando Pagan, MD, medical director of the GUMC Translational Neurotherpeutics Program and director of the Movement Disorders Program at MedStar Georgetown University Hospital (pictured left).

But three months after withdrawal of the drug, participants returned to the same reduced cognitive and motor state they had before the study began, Pagan adds.

Some serious side effects were reported including one patient who withdrew at week four of treatment due to heart attack and three incidents of urinary tract infection or pneumonia. The researchers say these incidents are not uncommon in this patient population, and additional studies are needed to determine if the adverse events are related to use of nilotinib.

“Long term safety of nilotinib is a priority, so it is important that further studies be conducted to determine the safest and most effective dose in Parkinson’s, says Pagan.

The researchers designed the clinical trial to translate several notable observations in the laboratory. The preclinical studies, led by Moussa, showed that nilotinib, a tyrosine kinase inhibitor, effectively penetrates the blood-brain barrier and destroys toxic proteins that build up in Parkinson’s disease and dementia by turning on the “garbage disposal machinery” inside neurons.

Their published studies also showed nilotinib increases the levels of the dopamine neurotransmitter — the chemical lost as a result of neuronal destruction due to toxic protein accumulation — and improves motor and cognitive outcomes in Parkinson’s and Alzheimer’s disease animal models.

“Our hope is to clarify the benefits of nilotinib to patients in a much larger and well controlled study. This was a very promising start,” Moussa says. “If these data hold out in further studies, nilotinib would be the most important treatment for Parkinsonism since the discovery of Levodopa almost 50 years ago.”

He adds, “Additionally, if we can validate nilotinib effects on cognition in upcoming larger and placebo controlled trials, this drug could become one of the first treatments for dementia with Lewy bodies, which has no cure, and possibly other dementias.”

Two randomized, placebo-controlled phase II clinical trials are planned for summer/fall in Parkinson’s and Alzheimer’s diseases. The Translational Neurotherpeutics Program is also planning a small trial in ALS (Lou Gherig’s disease).

According to Novartis, the cost (as of Oct. 2015) of nilotinib for the treatment of CML was about $10,360 a month for 800 mg daily. The dose used in this study was lower — 150 and 300 mg daily.

The phase I study received philanthropic funding and was supported by the Georgetown-Howard Universities Center for Clinical and Translational Science.

Moussa is listed as an inventor on a patent application that Georgetown University filed related to the use of nilotinib and other tyrosine kinase inhibitors for the treatment of neurodegenerative diseases.

Study co-authors include Ellen H. Valadez, MD; Yasar Tores-Yaghi, MD; Reversa R. Mills, MD; Barbara M., Wilmarth, NP; Hellen Howard, RN; Connell Dunn; Alexis Carlson; Sean L. Rogers, MD, PhD; and Ramsey (Drew) Falconer, MD; from the National Parkinson’s Foundation Center for Excellence, the Translational Neurotherapeutics Program, and the Movement Disorders Program at the MedStar Georgetown University Hospital; Michaeline Hebron, and Xu Huang, and Jaeil Ahn, PhD, Georgetown University Medical Center.

The researchers represent the MedStar Georgetown Movement Disorders Program, GUMC’s Translational Neurotherapeutics Program, the Laboratory for Dementia and Parkinsonism, the Georgetown-Howard Universities Center for Clinical and Translational Science Clinical Research and the department of biostatistics.

About Georgetown University Medical Center
Georgetown University Medical Center (GUMC) is an internationally recognized academic medical center with a three-part mission of research, teaching and patient care (through MedStar Health). GUMC’s mission is carried out with a strong emphasis on public service and a dedication to the Catholic, Jesuit principle of cura personalis — or “care of the whole person.” The Medical Center includes the School of Medicine and the School of Nursing & Health Studies, both nationally ranked; Georgetown Lombardi Comprehensive Cancer Center, designated as a comprehensive cancer center by the National Cancer Institute; and the Biomedical Graduate Research Organization, which accounts for the majority of externally funded research at GUMC including a Clinical and Translational Science Award (UL1TR001409-01) from the National Institutes of Health.

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GEORGETOWN UNIVERSITY MEDICAL CENTER
Suite 120
4000 Reservoir Road, N.W., Washington D.C. 20057
Phone: (202) 687.0100

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If, like me, you find this interesting , there is a way to sign up to receive updates on the GUMC website.  Try this link.

What do you see out on the horizon?  What makes you feel the most hopeful?

As for the Parkinson’s Cafe, it is a drop-in program from 10am-noon  held at the Insight Memory Care Center at 3953 Pender Drive in Fairfax.  There’ve been 3 so far and each one seems to have developed its own purpose or format  based on who shows up.  The next Parkinson’s Cafe will be held on the second Monday of September.  For more information check out the Parkinson’s Cafe website..

Until next time!

A New Year for W WPD Begins

Parkinson’s Foundation of the National Capital Area Update

Wow, has this summer flown by! I can’t believe it’s already time again for the Parkinson’s Foundation of the National Capital Area’s annual Walk-Off Parkinson’s Fund and Awareness Raising Event.  This year’s Walk will be on September 18th in Washington, DC at Nat’s Park, home of the Washington Nationals.  So put on your walking shoes and start warming up.

Can’t make it this year but still want to  help? PFNCA is providing pre-printed postcards to ask family and friends if they would like to support the cause and how to do it.  If you didn’t  receive a packet in the mail, call the PFNCA at 703-734-1017.  You can also register and get additional information at this number.    If you have taken even one class through the PFNCA this year, attended a speaking engagement sponsored by them or the annual symposium, this is your chance to give back.  If you haven’t done any of this things, you really should try out their program.

 

Women with Parkinson’s Disease Support Group

Our  meetings resume  on the first Wednesday in September, September 7th.   Our program will start with a BANG when Speech/Language Pathologist Melanie Dorn speaks to the group.Well known and respected Melanie Dorn will speak on taking care of our vocal cords,aspiration dangers, the BIG and LOUD LVST PROGRAM and more, including the Vocal Yoga program. She plans on plenty of time for questions so bring them on.

My idea for the next program is to address head-on a great concern of mine – when to quit driving, how to stay healthy to driving  and what options there are once you do quit. If you’ve faced this issue and are willing to share with us, I think we’d learn a lot. if this sounds like a snooze, say so. I’m not easily insulted these days. We will, of course, continue last year’s efforts to space out speakers to favor group time.  I have seen many of you over the summer at varied classes, PD-related meetings and drop-ins like the Parkinson’s Cafe and even in dark garages in Falls Church.

I look so forward to seeing everyone and catching up with you.

So we’ll be together on the 7th.  Any topics you think need exploring can be passed along to me.

 

 

Tips to Over come Communication Impairment in PD: By Dr. De Leon

defeatPARKINSONS

As we near the WPC 2016 which will be held in Portland, Oregon this year..one of the topics of great interest being presented is one of communication impairment.

First, we must look at what is meant by communication. The word  “communication”  implies the usage of  a deeper and complex network of interconnected neurons in the brain actively working to conceive, send, receive, and interpret  auditory, written as well as verbal & non- verbal messages. A problem or disruption at any point in this chain and we have ineffective or impaired communication. And as well all know ineffective or poorly executed communication can lead to disastrous outcomes.

For instance, there is a well known story which highlights this problem, a message given by a British Army Commander which stated: “Send reinforcements, we’re going to advance.”

However,  reinforcements NEVER arrived because message received at command center said instead:

“Send three and four-pence, we’re going…

View original post 780 more words

Live Your Life!

LIVE YOUR LIFE!

This was the upbeat message brought to our group by one of our area’s pre-eminent Movement Disorder Specialists, Dr. Drew Falconer.  Dr.  Falconer, along with his partner, Dr. Sean Rogers, make up the INOVA Movement Disorders Center. ” Dr. Drew”, as he is sometimes called, was a favorite speaker from last year and the group eagerly anticipated his return.

Live Your Life was the message Dr. Drew brought to us this time.   his goal for his patients is to not let  Parkinson’s Disease or its symptoms stop them from living their life with joy.  That is quite the goal for a doctor to have , something beyond managing symptoms and testing evaluations. Implied in his goal is a personal investment in how his patients struggle or achieve under his care.

Life your life!  In support of his message, Dr.  Falconer makes these points:

  • Parkinson’s Disease won’t kill you.
  • PD shouldn’t  change your life.
  • PD shouldn’t keep you from being happy.

Later, Dr.  Drew  through the floor open to questions from the group. I was often too busy listening to take complete notes.  If you took notes and caught other Q&A’s, please leave them as a comment. So,here we go:

What would you recommend that people with PD do take care of themselves?

A couple of recommendations were to get physical therapy as a regular part of your treatment.  With physical therapy , you can stay loose, get muscles strong and monitor changes.  He stressed exercise and spoke particularly about water exercises and boxing  He also strongly recommends the BIG & LOUD programs. In fact, he recommends the LOUD program annually. Also, you should see a Movement Disorder Specialist at least once a year if your regular neurologist is not one.  They are more trained in the new research and treatment of the disease.

Can you talk about pharmaceutical treatment options?

There are 16 medications in 5 categories, along with.  The first and still heavily relied upon is carbodopa/levadopa, in both generic and name brand, Sinamet.  Several reformulations have been tried, including the new and currently popular Rytary, which consists of  time-released carbodopa/levadopa.  Other medications the doctor finds useful includes Azilect, which enhances the natural dopamine in your body.

Dr. Falconer tries to find the best combination of medications to provide you with  a dependable even level of dopamine in your system to minimize the”on” and “off” phases many of us find with our medicines.  He also tries to minimize how many times a day you need to stop LIVING YOUR LIFE to pop a pill. He also sees an important role for DBS (Deep Brain Stimulation) in a long-term treatment plan.

What should I do for a healthy diet and how do I work around protein?

A diet similar to the Mediterranean diet provides  a general healthier diet for everyone.  Featuring nuts, olive oil, very little red meat, and lots of  vegetables and fruit, it can also help with constipation,

Constipation?  Why’d you bring that up?

Constipation is n of PD from which many suffer.  Research  has shown that constipation inhibits the processing of carbadopa/levadopa by allowing it to get stuck in your gut, thereby inhibiting its absorption in your system.

Is it likely that my Parkinson’s is due to genetics?

No.  Current research shows that the chance of it being genetic is very slim.

Why do I feel so bad around 3-5 pm?

That is a common time to be tired  for anyone.  Just consider all the cultures that have a  some form of a siesta. Dr. Drew’s partner, Dr. Rogers speaks  of this as a “neural reserve”, when you lose the natural ability to deal with  extra demands .

What new help is out there?

Three new possibilities are either on the market or on the way.

  • Focused Ultrasound, a  surgery which focuses sound to burn spots on the brain that burns spots on the brain that cause PD.
  • A new L-Dopa delivery system that stays in your gut for a long time to keep the medication in your system.
  • The DAT scan, which will help with diagnosis.

 

Thanks again to  Dr. Drew Falconer for taking the time to drive to us and spend time with our group which was very educational of us.

And thanks, too, to all the members who contributed to our delicious lunch buffet.

Dr. Falconer completes our speaker series until fall.  Our meeting in June will be a group-only time before we take a summer break.  For fall, so far, I’m hoping to get a speech therapist in to talk about taking care of our voices.  If you have  a subject you’d like discussed or a speaker you’d like to hear, please email me with your ideas.  Some I’ve heard or thought about include:

  • What if I can’t afford my medicines?
  • If I decide to give up driving, how will I get around?  (one or two of our own could probably lead that one)
  • Self-image and chronic disease.
  • What is this “sleep” I keep hearing about and how do I get it?
  • Raising children while coping with PD.

See you on June 1st and remember to …

LIVE YOUR LIFE!