One challenge all Parkinson’s patients have is to take our medication at the right time and right dose.  I often struggle with not remembering when I last took my medication.  That can be frustrating and debilitating.  Well, I have come up with a practical solution.

This will sound a little old school, inelegant, or perhaps even unsanitary, but a useful technique is to write down the last time I took my meds on my hand.  My wife hates this practice and tells me to use my cell phone to remind me.  I did put reminders on my phone, but I don’t always have it with me.  My hands, however, are never far from me.

So, I write codes on my hand, such as, “6as” for 6 o’clock Amantadine and Stalivo, or “9s” for 9 o’clock Stalivo.  Not fancy, but highly effective.

If God writes reminders on His hand, why shouldn’t I?  See in Isaiah 49:15-16, the Bible says,  “Can a mother forget the baby at her breast and have no compassion on the child she has borne?  Though she may forget, I will not forget you!  See, I have engraved you on the palms of my hands; your walls are ever before me.

April 26, 2017   by Magdalena Kegel

The fourth and last patient of the first group in a clinical trial of stem cell transplants in Parkinson’s disease has successfully received the transplant, the International Stem Cell Corporation (ISCO) reported. Researchers are now preparing for the next stage, in which patients will receive a higher number of cells.

So far, researchers have not recorded any adverse events among the four patients who had neural stem cells, called ISC-hpNSC, inserted into their brains.

If successful, the stem cell therapy has the potential to regenerate lost nerve cells — and revolutionize the way Parkinson’s disease is treated.

“We are very encouraged by the early clinical safety data for ISC-hpNSC,” Russell Kern, PhD, executive vice president and chief scientific officer of ISCO, said in a news release.

The Phase 1 clinical trial (NCT02452723) was launched in March 2016, and expects to enroll 12 patients with moderate Parkinson’s disease. Patients are divided into three groups of four patients each. The groups will receive increasing doses, ranging between 30,000,000 to 70,000,000 neural stem cells.

The main goal of the trial is to assess the safety of the treatment, with patients followed for 12 months after the transplants.

But researchers will also use brain scans to assess whether the cells survive once transplanted, and if they contribute to making the patients better. Participants are assessed using the Unified Parkinson Disease Rating Scale (UPDRS) and other tools, and although the study is small, researchers will evaluate any potential improvements in symptoms.

Parkinson’s symptoms typically appear when a large proportion of brain cells containing dopamine are already gone. And while treatments with added dopamine may improve symptoms, at least for some time, the treatment approach is fraught with dosing difficulties.

The ISC-hpNSC cells are derived from what researchers call human parthenogenetic stem cells. Parkinson’s animal models that received the treatment improved, making researchers and patients alike hope that the same will be seen in patients.

The cells are thought to provide neurotrophic support to brain cells still alive. This means they secrete factors that help dying neurons survive. They are also thought to replace the dead and dying dopamine neurons.

But as the trial started, researchers raised concerns that not enough was known about what the cells do in the brain. The group of researchers also questioned whether the safety follow-up of one year was sufficient, and argued that clinical trials of stem cell approaches may be a premature step, in an article in the Journal of Parkinson’s Disease.

Still, ISCO has an optimistic view of the trial continuation.

“We look forward to dosing our second cohort with 50 million cells and enrolling the rest of our clinical trial participants in 2017,” Kern said. “The Data Safety Monitor Board meeting will be held in the beginning of May and we expect to receive approval to start an accelerated enrollment of patients into the second cohort.”

From Parkinson’s News Today

January 3, 2018   By Wendy Henderson

Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you manage your chronic illness.

We’ve put together a list of some of the best mobile apps for managing your chronic illness:

Medisafe is an app that helps patients manage medications. It helps with dosage and reminds you when you need to take your meds, increasing adherence rates. The information can also be shared with your health care team and pharmacy.

Pain Diary works for anyone with a chronic illness. It allows patients to chart and score pain as well as record and track other symptoms of the disease such as fatigue and mood swings. This app also has a feature where patients can connect with others living with the same chronic illness and swap best practices.

ZocDoc is a handy app if you’ve recently been diagnosed with a chronic illness, since one of the first things you’ll need to do is find a doctor to treat you. ZocDoc allows you to search for local specialist doctors who are approved by your insurance company. The app will even tell you when the doctor is available to see you.

MORE: How Parkinson’s disease affects your body

My Medical Info is an app that stores all your relevant health history and insurance details. This makes filling out those endless forms a little less challenging, since you won’t have to rely on your memory for all the details. The app will also allow you to program in doctors’ appointments and all the medications you’re taking.

Fooducate helps you keep track of your diet and make healthy choices. Eating well is an integral part of managing any chronic illness and this app will help you to eat the right foods and get you to a healthy body weight. You can program in how many calories you want to consume a day and then add in the food choices you make, the app will work out the nutritional values of everything you eat and tell you how many calories you’ve consumed. It also works in conjunction with many fitness apps to add in details of any physical activities and calories burned.

Sleep Cycle helps you get the best out of your sleep. The app analyzes how much sleep and the quality of sleep you get each night and you can also have the alarm set to wake you when you’re in your lightest sleep, leaving you feeling less groggy and more refreshed each day.

MORE: The five stages of Parkinson’s disease

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

 

Taken from michaeljfox.org

Cognitive impairment, disturbance of memory, thinking and/or language abilities, is a non-motor symptom that can be associated with Parkinson’s. Cognitive disturbances can arise at any time in the course of Parkinson’s disease (PD) and vary widely in severity. Some people don’t experience any problems; others have subtle changes only detectable on formal testing. Still others have issues they describe as mild or somewhat annoying, and some will go through more significant changes that interfere with the ability to perform daily activities.

Cognitive impairment in PD primarily impacts “executive function,” which can lead to difficulty with:

• Multitasking
• Planning and organizing
• Problem solving

Attention, thought processing and word finding also are commonly affected.

• What is mild cognitive impairment and how is it managed?
• What is dementia and how is it treated?
• Why do cognitive changes occur?
• How are cognitive changes evaluated?
• How is brain health maintained?
• What is the current research surrounding cognition and Parkinson’s?

No medications are currently available to treat MCI. Adaptive strategies — making notes, relying on a calendar, keeping objects (such as keys) in the same location to avoid misplacing them — can help. Your doctor may recommend cognitive rehabilitation, in which a therapist teaches memory exercises through a structured program.

Mild cognitive impairment can, but doesn’t always, progress to dementia.

It can be difficult to differentiate PDD from Alzheimer’s dementia (since there is no specific test to diagnose either), although Alzheimer’s typically causes more pronounced memory loss and confusion, and also lacks the motor symptoms of Parkinson’s (although stiffness and slowness may develop in very late stages). When dementia starts at the same time or within a year of the onset of Parkinson’s motor symptoms, Lewy body dementia (LBD), a form of atypical parkinsonism, may be the cause. LBD is characterized by dementia and the motor symptoms of Parkinson’s as well as fluctuating levels of alertness and visual hallucinations. (Read more about LBD here.)

Medications may ease the symptoms of dementia. Exelon (rivastigmine) is FDA-approved for the treatment of mild to moderate levels of PDD. It works by blocking an enzyme that breaks down acetylcholine, a brain chemical that supports cognition. The drug may therefore improve cognition, lessen associated behavioral changes (such as agitation or aggression) and delay the need for alternative living situations, such as nursing homes. (Read more about this medication on the Non-motor Medications page.) In some situations, your doctor may prescribe other medications that work in the same manner, such as Aricept (donepezil), which is used for Alzheimer’s dementia.

Evaluating Cognitive Problems

The first step to evaluating cognitive impairment is letting your doctor know that you’re concerned. It may be normal aging, Parkinson’s or a separate medical condition, but you can’t figure it out unless you bring it up. Doctors will ask about mood disturbances, such as depression or anxiety, and sleep problems, as these can impact memory and require different evaluation and management strategies. They’ll review your prescription and over-the-counter medications to ensure that these aren’t contributing to cognitive problems. (Anticholinergic and pain medications commonly contribute to memory and thinking issues.)

No brain imaging or blood tests can specifically diagnose MCI or PDD, but tests may exclude other conditions, such as thyroid problems or vitamin B12 deficiency, which also can affect cognition. Your doctor may recommend formal detailed memory testing — neuropsychological testing — to determine exactly what problems might be present and establish a baseline for future comparison.

There may come a time in your life when your emotions have been depleted, and you need to find ways to recharge yourself so you can continue to lead a good life. When you are emotionally exhausted, it is difficult to get anything done. Here are some tips to help you reenergize your emotional being.

1. Realize where you are. We all have transition times in our lives, and when we are in the middle of one of them, it can be hard to see what is really going on. You may be feeling disconnected from your work, or perhaps you are mentally exhausted, which is an uncomfortable emotional experience.
2. Get some counseling. When you are not feeling yourself, it may require an outside perspective to give you the information you need to take action or to stop doing something that is no longer benefiting you. It can be hard to see that even though you may love something, it might not be good for you at this time.
3. Calm yourself. Whatever self-soothing techniques you have learned or used in the past, now is the time to dust them off and start your process again. Building emotional strength requires daily exercise, just like building physical strength. Whether you meditate daily, or journal, or simply have a quiet cup of tea in the backyard, it will help to recharge you.
4. Hang out with people who love you. This may actually be difficult if you are in a wounded place and don’t want your loved ones to see you this way, but it really is a great healer. You could say, “Hey, I’m kind of low energy today and need a break. How would you feel about just hanging out?” This will let them know where you are without giving details, and you can have a relaxing day.
5. Get a complete physical. There may be a physical cause to your emotional depletion, and I recommend you get a medical doctor to look you over. Sometimes just the reassurance from a licensed practitioner is all you need to start getting your strength back.
6. Try something different. It has been proven that doing new things increases your connection with life and those close to you. If you have never been camping, now may be a good time to sleep under the stars and commune with nature. Just reviewing your bucket list will help you decide what adventure you want to take.
7. Write down your worries. Getting your pain on paper can give you some perspective on what is going on. Don’t rush through this, but give yourself a couple of days to make a complete list. Then start crossing off things as you take care of them.
8. Write down what is working for you in your life. Also list what you know about who you are: your good points. Compare your worry list with your list of what’s working, and hopefully the balance is in your favor. If not, then use what you have on the good list to shrink the worry list.
9. Take a break. It’s possible you just need a staycation for a few days (or a couple of months) to let things settle or discover an answer to your issues. People who don’t take vacations tend to burn out, so save yourself from that pain by taking a rest when you need to, even if you don’t really think that you do.

I’ve only scratched the surface here. There are so many other tools. The most important thing is that you are aware of what you are going through at this stage of your life. Your feelings may make complete sense, but if not, you now have some tools to move your life forward.

By Barton Goldsmith, Tribune News Service

 

Included seven times in U.S. News & World Report’s ‘Best Diets’

By Nancy DiFiore
January 5, 2016

A diet created, studied and reported on by researchers at Rush University Medical Center has been ranked the easiest diet to follow and the second best overall diet (tying in both categories) for 2016 by U.S. News & World Report. The MIND diet also tied for third for best diet for healthy eating and was ranked in the top five in five categories and the top 20 in seven, as follows:

• Easiest Diets to Follow: No. 1 (tie)
• Best Diets Overall: No. 2 (tie)
• Best Diets for Healthy Eating: No. 3 (tie)
• Best Diets for Diabetes: No. 4 (tie)
• Best Heart-Healthy Diets: No. 4
• Best Weight-Loss Diets: No. 16 (tie)
• Best Fast Weight-Loss Diets: No. 21 (tie)

Now in its sixth year, the annual “Best Diets” list provides the facts about 35 chosen eating plans and ranks them on a range of levels, from their heart healthiness to their likelihood to help with weight loss. To create the annual rankings, U.S. News editors and reporters spend months winnowing potential additions to the diet roster and then mine medical journals, government reports and other resources to create in-depth profiles. Each profile explains how the diet works, whether or not its claims are substantiated, scrutinizes it for possible health risks and examines what it’s like to live on the diet, not just read about it.

Eating away at Alzheimer’s risk

The MIND diet is a research-based diet developed by Martha Clare Morris, ScD, a Rush nutritional epidemiologist, and her colleagues. In recent studies, the MIND diet showed that it helped lower the risk of Alzheimer’s disease by as much as 53 percent in participants who adhered to the diet rigorously, and by about 35 percent in those who followed it moderately well.

“One of the more exciting things about this is that people who adhered even moderately to the MIND diet had a reduction in their risk for Alzheimers,” Morris says. The researchers also have found that adhereing to the diet may slow cognitive decline among aging adults, even when the person is not at risk of developing Alzheimer’s.

The name of the MIND diet is short for Mediterranean-DASH Diet Intervention for Neurodegenerative Delay. The diet is a hybrid of the Mediterranean and DASH (Dietary Approaches to Stop Hypertension) diets.

Both diets have been found to reduce the risk of cardiovascular conditions, like hypertension, heart attack and stroke. Some researchers have found that the two older diets provide protection against dementia as well.

Morris and her colleagues developed the MIND diet based on information that has accrued from years’ worth of research about what foods and nutrients have good, and bad, effects on the functioning of the brain.

A wine and no cheese party

The MIND diet has 15 dietary components, including 10 “brain-healthy food groups” and five unhealthy groups — red meat, butter and stick margarine, cheese, pastries and sweets, and fried or fast food.

To adhere to and benefit from the MIND diet, a person would need to eat at least three servings of whole grains, a green leafy vegetable and one other vegetable every day — along with a glass of wine — snack most days on nuts, have beans every other day or so, eat poultry and berries at least twice a week and fish at least once a week. In addition, the study found that to have a real shot at avoiding the devastating effects of cognitive decline, he or she must limit intake of the designated unhealthy foods, especially butter (less than 1 tablespoon a day), sweets and pastries, whole fat cheese, and fried or fast food (less than a serving a week for any of the three).

Berries are the only fruit specifically to be included in the MIND diet. “Blueberries are one of the more potent foods in terms of protecting the brain,” Morris says, and strawberries also have performed well in past studies of the effect of food on cognitive function.

“The MIND diet is a modification of the Mediterranean and DASH diets that highlights the foods and nutrients shown through the scientific literature to be associated with dementia prevention,” Morris says. “There is still a great deal of study we need to do in this area, and I expect that we’ll make further modifications as the science on diet and the brain advances.

“We devised a diet and it worked in this Chicago study,” she adds. To establish a cause-and-effect relationship between the MIND diet and reductions in the incidence of Alzheimer’s disease, “The results need to be confirmed by other investigators in different populations and also through randomized trials.”

From Rush University Medical Center News Features

 

 

 

 

I hope this inspires you as much as it does me.

Brought into the limelight by actor Michael J. Fox, Parkinson’s disease affects the body’s ability to control movement.

The most prominent signs of Parkinson’s disease result from damage to brain cells that produce a neurochemical called dopamine. Dopamine helps people have smooth, coordinated muscle movements by relaying messages to the parts of the brain that control these movements.

Damage to dopamine-producing cells can induce symptoms, such as tremors, stiffness and slowness.

“The early signs tend to be subtle and intermittent, and then they become more progressive until it is clear that something is wrong,” says Jennifer Goldman, MD, a neurologist who specializes in movement disorders at Rush University Medical Center.

The damage to brain cells is not limited to those producing dopamine. Other symptoms such as depression, anxiety, cognitive impairment, constipation and fatigue result from damage to other brain regions and are the focus of more recent research.

At present, Parkinson’s disease is a chronic disease with no known cure. While symptoms can be managed with medication, they continue to worsen.

The good news? Goldman predicts that in the next decade there will be significant breakthroughs in treating Parkinson’s disease and slowing the progression of the disease.

In fact, according to the National Institute of Neurological Disorders and Stroke, current advances in Parkinson’s research have already raised realistic hopes of being able to halt the progression of the disease, restore lost function and even prevent it entirely.

While the timeframe for this is hard to predict — it could be within five to 10 years — one thing is certain: hope is on the horizon. Here, Goldman shares five things to know about Parkinson’s disease.

1. Early detection may improve future treatments.

One of the big pushes in Parkinson’s research today is detecting the disease before such characteristic movement symptoms, like tremors, surface.

Research suggests that dopamine begins to decline six to 10 years before any neurological symptoms appear and that damage to other nervous system regions may occur even earlier. Very early signs of Parkinson’s disease that may appear before evident motor deterioration include the following:

• Loss of sense of smell (or, anosmia) which begins about four to six years before movement dysfunction.
• Chronic constipation, which can begin up to 12 years before motor symptoms.
• Physically acting out dreams at night, a sleep disorder that is known as REM behavior disorder, can begin up to decades before any motor symptoms.

While these symptoms do not always signify Parkinson’s disease, people should discuss these issues with a physician. By studying groups of people with early signs, researchers are developing treatments that target different parts of the brain that could slow, or even halt, the progression of the disease.

“Our goal is to find ways to prevent people from developing movement problems, and we’re getting to a point where that is an achievable goal,” Goldman says.

2. Standard treatments are being tweaked.

Since the late 1960s, levodopa (a medication that the brain converts to dopamine) has been the most effective treatment for addressing motor symptoms of Parkinson’s disease. The problem for some patients, however, is levodopa does not provide the constant flow of dopamine necessary for smooth function throughout the day.

“People sometimes get into a pattern of good function when the medication is working well, alternating with bad function when the medication is not working well,” Goldman says. “That unpredictability makes it hard to live a normal lifestyle.”

New research is focused on developing treatments that will give people a more steady flow of dopamine and decrease fluctuations.

“There is a lot of work going on to fine-tune brain cells to receive dopamine so the response is better,” says Goldman. “The Michael J. Fox Foundation and some of the drug companies are very interested in this area of research.”

One common side effect of not having steady levels of dopamine is dyskinesia (involuntary movements). To address this issue, Christopher Goetz, MD, director of the Parkinson’s Disease and Movement Disorders Program at Rush, is working on a multicenter clinical trial of topiramate (a seizure medication) as an add-on to amantadine (a medication used for treating dyskinesia) to improve control of dyskinesia. This study is funded by the Michael J. Fox Foundation, and Rush is both a participating site and the coordinating site for the study.

Additionally, Leo Verhagen, MD, PhD, a neurologist at Rush, is participating in a study involving an investigational agent for dyskinesia. The study will include people who are taking amantadine as well as those who are not taking amantadine for dyskinesia.

3. Surgical intervention decreases fluctuations.

People who respond well to medications, but struggle with fluctuations throughout the day may be eligible for deep brain stimulation (DBS), a surgical treatment in which a neurostimulator delivers tiny electrical signals to areas of the brain that control movement.

“DBS is not dopamine, and it does not cause the release of dopamine. But the stimulation is constant, so it reproduces the effect of having constant dopamine,” says Goldman. “For people who do well with DBS, it is a miraculous improvement.”

While DBS is rarely a substitute for medication, it is a good option for otherwise healthy people who have periods where their medications aren’t working.

4. Exercise can improve function.

In addition to its well-known effects of slowing down cognitive decline and boosting heart and lung function, exercise can help improve gait, balance, tremor, flexibility, grip strength and motor coordination in people with Parkinson’s disease. Ongoing studies are also looking at how exercise may, in fact, influence the progression of the disease.

Beneficial exercises include treadmill training, biking, dance, tai chi, yoga, and strength and flexibility training.

Several years ago, Rush partnered with Hubbard Street Dance Center to create a dance class for Parkinson’s patients. Today, Hubbard Street Dance’s Parkinson’s Project is a popular weekly class for people with Parkinson’s disease, their loved ones and their caregivers.

The program uses contemporary dance techniques, along with live music, to help patients improve their balance, dexterity or an overall mobility. Equally as important, the class is a warm, welcoming community that provides emotional support to its participants.

5. Managing your mood is crucial.

Living with a chronic, progressive disease can take a serious emotional toll on patients and their loved ones. Depression and anxiety are common symptoms of Parkinson’s disease, with up to 60 percent of people who have the disease experiencing mild or moderate depressive symptoms.

“Depression becomes the real driver of quality of life for people with Parkinson’s disease,” says Goldman. “You can adjust people’s motor function all day long with medication or surgery, but if you can’t improve their mood, then they have a poor quality of life.”

Some patients benefit from psychological counseling and/or taking medications to help improve their mood. Support groups — such as the group hosted by Rush Oak Park Hospital the second Saturday of each month — can also help people with Parkinson’s disease learn how to live changed, yet still full lives.

“We work with our patients to find medications and other strategies that will improve their quality of life at every stage of the disease, targeting the symptoms that matter most to them and their families,” says Goldman.

 

Reprinted from Rush University Medical Center

I think fava bean powder helps to make my carbidopa/levodopa medication work better.

I first heard about what fava beans can do for Parkinson’s suffers in November 2016 from a Facebook post about “AtreMorine”.  The page was called “Live better Parkinson’s”.  The story was about a Spanish research team that found two major keys of the neuroprotection and natural increase of dopamine.  My interest was immediately piqued.   The research team found that a supplement called “AtreMorine” protects selectively dopaminergic neurons and significantly increases naturally the dopamine level in the organism and without any adverse effects.

I immediately began to research AtreMorine and found that is quite expensive.  One 75 gram bottle cost 97 €, plus 17 € shipping, from Netherlands.   AtreMorine is made from fava beans which are a natural form of L-dopa.

Knowing the fava bean was the central element, I tried to find fava beans or fava bean powder.   Luckily, my daughter found exactly what I was looking for from a company known as Nutricargo in New Jersey.   I was able to get a 1 pound bag for only $20.

I began taking the AtreMorine in December 2016 as an experiment.  The article said a dose was 5 to 10 grams which is one or two scoops of the spoon they provided.  The directions were to not take the fava bean powder with water or hot food.  I began mixing 10 grams, or two scoops, of fava bean power with a banana and pudding.  Within a couple weeks I began to feel better.  The persistent Parkinson’s ache was gone.  I felt better than I had in years.   I felt like the dyskinesia from too much carbidopa/levodopa was lessened and the medicine off times were shorter.  Fava bean powder, by the way, tastes awful.

On January 3, I visited with a neurologist at Hines VA Hospital in Chicago.  I told him I felt better than I had in years.  He could not explain it.

I wanted to find out exactly how much the fava bean powder was helping me, so, I decided to conduct an experiment.  I didn’t think I could go completely without medicine, so decide to reduce my intake.  I usually take a dose of carbidopa/levodopa every two hours.  I decided to take two scoops of fava bean powder, twice a day.  I would continue to take the extended release carbidopa/levodopa every six hours.

Well, the first day was great.   I felt like a new man.   But the second day was not good at all.  So, after about 48 hours of trying, I went back to my original dosing schedule.  After almost a week of taking my regular doses of medicine and the fava bean powder, I began to feel well again.  The result of my experiment was the fava bean powder help reduce dyskinesia, reduce “off” periods, and relieve the muscle ache caused by Parkinson’s.

Lessons learned:  I have never felt better when I was using the fava bean powder.  Continue regular medication regimen.   Some Parkinson’s medication cause constipation – fava bean powder makes it worse.