First portable system for monitoring patients with Parkinson's disease tested on 50 people from different countries

February 24, 2015

Source:

Universitat Politècnica de Catalunya (UPC)

Summary:

The evolution of Parkinson's is monitored in real time through a new portable system, with results sent to the doctor to improve the prescription of medication, developers report.

The evolution of the disease is monitored in real time and sent to the doctor to improve the prescription of medication

The first portable system for monitoring patients with Parkinson's disease is being tested on 50 people from different countries

The REMPARK European telemedicine project is coordinated by the Universitat Politècnica de Catalunya and has a budget of about €5 million. Also participating are the Hospital Quirón Teknon, Telefónica I+D, the European Parkinson's Disease Association and research centres and companies from Germany, Portugal, Italy, Israel, Ireland and Sweden.

Parkinson's disease is the second neurodegenerative disease in number of patients after Alzheimer's disease. The Technical Research Centre for Dependency Care and Autonomous Living (CETpD) of the Universitat Politècnica de Catalunya has developed a pioneering portable system for monitoring the motor status of Parkinson's disease patients in real time. The system also determines the status of patients while they are walking or during their daily activities and acts when the person has gait problems such as slowing or freezing. This system is being developed within the European project REMPARK (Personal Health Device for the Remote and Autonomous Management of Parkinson's Disease), coordinated by the CETpD. The project's aim is to improve the quality of life of patients with Parkinson's disease.

In addition to the UPC, also participating in the project are the Parkinson's Disease Unit of the Hospital Quirón Teknon, Telefónica I+D, the European Parkinson's Disease Association and research centres and companies in Germany, Portugal, Italy, Israel, Ireland and Sweden.

REMPARK's overall objective is to accurately determine and quantify the symptoms of the disease associated with motor status and to monitor their progression. Due to fluctuations, patients do not have a steady motor status throughout the day, but in some cases undergo dramatic changes. It is almost impossible for patients to record this information accurately. Since the treatment of Parkinson's disease is symptomatic, detailed knowledge of the patients' motor status is crucial in order to optimise treatment and improve their quality of life. This information will allow patients to be monitored more effectively and allow doctors to personalise and tailor treatment to the specific needs of the patients. The REMPARK system aims to be non-invasive and highly effective.

This is the first time in Europe that work has been done with outpatient data on Parkinson's disease: the system has been tested with 50 patients at home rather than in the laboratory. A total of more than 50 volunteers from Spain, Italy, Ireland and Israel have participated in REMPARK.

The project ends on April 30. The preliminary results are good and pilot tests have compared the data of volunteers from the three countries. These results will be presented in a workshop on 21 April in Madrid, at which the contribution of the medical, social and economic benefits will be assessed.

The application of REMPARK will increase the independence of patients; it will improve management of the disease and treatment and rehabilitation of patients, and will avoid hospital admissions due to falls or poor compliance with medication. If REMPARK is incorporated as a tool for diagnosis and monitoring of the disease, it will improve the healthcare system in Europe, provide higher quality and more personalised care for Parkinson's disease patients, and increase the sustainability of the public resources used.

The REMPARK project The fundamental part of REMPARK is an inertial system attached to the waist by a belt of biocompatible material, about the size of a mobile phone. It is fitted with a set of sensors and a wireless transmission system to send the measurement and treatment data. This system is capable of detecting symptomatological parameters of the disease and determining the status of the patient at all times (on-off fluctuations, freezing, and other disorders of Parkinson's disease).

On-off fluctuations affect the patient's status during the day and are of variable and unpredictable duration. They include asymptomatic periods ("on" periods, when the patient is under the effects of the drug), reappearance of slowness and difficulty in walking, and even complete freezing of motion ("off" periods, usually related to discontinued or low medication).

Freezing of gait causes total immobility of patients when they are walking; it occurs suddenly and can last for a few seconds or several minutes.

Sensory stimulation The REMPARK system is complemented by a subsystem for action consisting of auditory stimulators and electrical stimulation. This subsystem is at an early stage with regard to applicability and effectiveness.

During the pilot tests, the auditory cueing using sound rhythms proved to be effective and successful. It is based on providing auditory stimulation through a wireless headset when the motion sensor detects that gait is altered or frozen. The personal equipment also includes a mobile phone with several functions: connecting the monitoring and action systems; acting as an interface for medical supervision; and transmitting medical questionnaires remotely and simultaneously linking to the data server.

The REMPARK system has a central server for storing, processing and analysing all patient data to determine their evolution. It also acts as an intelligent system to support decision making by medical staff.

Previous experience This project arose from previous research in this field by the CETpD, which is located on the UPC's Campus in Vilanova i la Geltrú. Since 2008, the CETpD has been developing objective systems for measuring symptoms of the disease and support tools for physicians to facilitate a more accurate diagnosis of its progression. These systems are based on accelerometers and gyroscopes that are used to measure parameters associated with movement.

The first tasks, within the framework of the project "Monitoring the Mobility of Parkinson's Patients" (MOMOPA), focused on detecting the motor status of patients using inertial systems. In the second project, "Home-Based Empowered Living for Parkinson's Disease Patients" (HELP), coordinated by Telefónica I+D, the algorithms were improved and the first real-time tests were carried out. For the first time, this project has tested the regulation of medication by a subcutaneous pump under medical supervision according to the mobility of the patients. The results in six patients were very positive.

The CETpD is currently working on the new project MOMOPA2, which extends the results of the first version to use with outpatients. MOMOPA2 is funded by the Carles III Health Institute and is coordinated by the Garraf Health Consortium. The TV3 Marathon has funded a project to improve some aspects of REMPARK under the coordination of the Hospital Quirón Teknon.

http://world.einnews.com/article/251631919/XjwyfP1sTkyoawSD

EFFECT OF RESISTANCE TRAINING ON PARKINSON'S DISEASE

23rd February 2015 - New research

Resistance training is any exercise that causes the muscles to contract against an external resistance with the expectation of increases in strength, tone, mass, and/or endurance. The external resistance can be weights, dumbbells, your own body weight, or any other objects that are heavy enough to cause the muscles to contract. 

Seven electronic databases were systematically searched for studies from 1946 to 2014 for the effect of resistance training on Parkinson's Disease. Seven studies, comprising of 401 participants with early to advanced Parkinson's Disease were included.

The analyses demonstrated significant effects (from a possible range of effect from -1.00 to +1.00) in favour of resistance training compared to non-resistance training or no training at all for : muscle strength (+0.61), parkinsonian motor symptoms (+0.48), and balance (+0.36). There was no significant effect on : gait, balance confidence and quality of life.

This review demonstrated that moderate intensity progressive resistance training, 2 to 3 times per week over 8 to 10 weeks, can result in significant strength, balance and motor symptom gains in people with early to moderate Parkinson's Disease.

Reference : Clinical Rehabilitation [2015] Feb 17 [Epub ahead of print] (C.L.Chung, S. Thilarajah, D.Tan) Complete abstract : http://www.ncbi.nlm.nih.gov/pubmed/25691582
http://www.viartis.net/parkinsons.disease/news/150223.pdf mail@viartis.net

For more information go to : http://www.emedicinehealth.com/strength_training/article_em.htm

©2015 Viartis 

THE EFFECTS OF TRANSCRANIAL MAGNETIC STIMULATION ON PARKINSON'S DISEASE

19th February 2015 - New research

Repetitive transcranial magnetic stimulation (rTMS) is a non-invasive technique that relies on electromagnetic induction using an insulated coil placed over the scalp. The coil generates brief magnetic pulses, which pass easily and painlessly through the skull into the brain. When pulses are administered in rapid succession, it is referred to as "repetitive TMS" or "rTMS", which can produce longer lasting changes in brain activity. However, results evaluating the effectiveness of rTMS in Parkinson's Disease are mixed. So an assessment was made of all studies concerning the use of rTMS in Parkinson's Disease.

Twenty studies with a total of 470 patients were included in the assessment of the efficacy of rTMS. The overall average effect of rTMS showed a significant reduction in motor symptoms. Analysis showed that the size of the effects estimated from high-frequency rTMS targeting the primary motor cortex and low-frequency rTMS applied over other frontal regions were significant. A greater number of pulses per session or across sessions was associated with larger rTMS effects. rTMS has been shown to be well tolerated.

The pooled evidence therefore suggests that rTMS improves motor symptoms of people with Parkinson's Disease. Combinations of rTMS site and frequency as well as the number of rTMS pulses are key modulators of rTMS effects.

For more information go to : http://www.hopkinsmedicine.org/psychiatry/specialty_areas/brain_stimulation/tms/
Reference : JAMA Neurology [2015] Feb 16 [Epub ahead of print] (Y.H.Chou, P.T.Hickey, M.Sundman, A.W.Song, N.K.Chen)

Complete abstract : http://www.ncbi.nlm.nih.gov/pubmed/25686212
http://www.viartis.net/parkinsons.disease/news/150219.pdf mail@viartis.net
©2015 Viartis 

Urgent call for new drugs to treat causes of Parkinson’s

Doctors and scientists believe urgent action is needed to discover new medicines to tackle degenerative nerve ailment

Deryal Wood has early onset of Parkinson's. Photograph: Antonio Olmos for the Observer

Robin McKie, science and technology editor

Saturday 21 February 2015 17.00 EST

Last modified on Saturday 21 February 2015 19.06 EST

Deryal Wood was 45 when she first began to suffer tremors in her hands. Her symptoms slowly worsened and she was diagnosed nine years ago as having early onset Parkinson’s disease. “I was given the drug L-dopa. The tremors disappeared,” she said.

But the tremors returned a few years later and doctors had to increase her dosage. “The side effects became horrible. My legs would freeze and I would fall over. I would suffer terrible muscle cramps every couple of hours,” said Wood, who lives with husband David and daughter Fay in Bexley, Kent.

As Wood’s symptoms worsened, she was offered treatment called deep brain stimulation, which involves placing electrodes deep into a patient’s brain. That has brought her tremors and movements back under control so that she can lead a fairly normal life.

“However, it does not control the depression, insomnia or exhaustion that I also experience because of Parkinson’s. Patients like me want something that slows down or halts the degeneration in our brain cells and so stops the disease,” she said.

It is a view shared by a rising number of doctors and scientists who believe action needs to be taken to discover a new class of drugs to tackle the degenerative nerve ailment.

Current medicines treat only the symptoms, they say, and should be supplemented with agents that directly attack its underlying cause.

To date, these efforts have failed, despite intense efforts by pharmaceutical companies which have spent billions on the quest.

“Drug companies have produced absolutely nothing to help with the degenerative process of Parkinson’s over the past two decades,” said Dr Tom Foltynie, at University College London’s Institute of Neurology. “We desperately need to take a new approach.”

Foltynie was speaking last week as scientists marked the 50th anniversary of the first use of levodopa, perhaps better known as L-dopa, the most effective drug ever created to treat Parkinson’s. It can extend patients’ quality of life for years, but eventually loses its effectiveness, as it has with Wood.About 130,000 people in Britain are affected by Parkinson’s disease, which is caused when brain cells, which make a chemical messenger called dopamine, start to die. As a result, messages between brain cells become disrupted and patients’ movements are disturbed.

Some suffer from rigidity of stance, others develop tremors. Later they can develop dementia, anxiety and depression. L-dopa can mask the development of some of these symptoms – particularly those that affect movement – but only for a few years. Slowly the tremors and rigidity return.

This point was backed by Foltynie. “Essentially we are in exactly the same position we were in 50 years ago when it comes to treating Parkinson’s,” he said.

“We are temporarily restoring the flow of dopamine in the brain, but we are not halting the continued degeneration of brain cells. It has been a remarkably frustrating battle. Drugs that have looked really promising in laboratory tests have proved toxic or ineffective when actually put in patients.”

However, there have been some positive developments. Foltynie’s team is developing a promising Parkinson’s treatment based on a diabetes drug, while another group, at Sheffield University, and funded by Parkinson’s UK, has been using skin cells taken from Parkinson’s patients to study how other medicines might affect them in laboratory tests.

The aim is to isolate drugs that have passed safety regulations for treating other conditions but which could also have an impact in halting the degeneration of brain cells in Parkinson’s disease.

“The crucial point is that existing drugs have already passed drug safety regulations and so could be put into patients very quickly,” said Dr Heather Mortiboys, one of the Sheffield team’s leaders. “That makes this approach very attractive.”

However, only drugs that can pass through the blood-brain barrier will work in the case of Parkinson’s disease.

The barrier protects the brain against attacks by bacteria but also blocks out medicines with large molecular structures.

“We are screening thousands of drugs while rating their ability to cross the blood-brain barrier and their ability to halt brain cell degeneration – and have identified several that could have potential as drugs for Parkinson’s disease. Our project has two years to go and, yes, we are hopeful,” she said.

http://www.theguardian.com/society/2015/feb/21/parkinsons-disease-urgent-call-for-new-drugs

Government panel recommends FIVE CUPS of coffee a day to ward off heart disease, liver cancer and Parkinson's

• A panel of experts from the Dietary Guidelines Advisory Committee, which convenes every five years, did a detailed assessment of the caffeinated beverage for the first time
• They recommend drinking three to five cups a day or 400 mg
• For pregnant women, the report suggests limiting coffee consumption to two cups a day

By SADIE WHITELOCKS FOR DAILYMAIL.COM

PUBLISHED: 10:32 EST, 20 February 2015 | UPDATED: 21:56 EST, 20 February 2015

Five cups of coffee a day may keep the doctor away, according to a new government health report.

A panel of experts from the Dietary Guidelines Advisory Committee, which convenes every five years, did a detailed assessment of the caffeinated beverage for the first time.

They concluded that a trusty cup of Joe could have various health benefits, including reduced risk of type 2 diabetes, heart disease, Parkinson's and liver cancer.

+1

Drink up! Five cups of coffee a day may keep the doctor away, according to a new government health report

The amount the report recommends drinking is three to five cups a day, while pregnant women should limit their intake to two cups a day.

There was found to be no added benefit from exceeding these limits.

Americanos appear to be the way to go, as the panel note that high-calorie creams, milks and sugars could diminish the potential positive health effects.

The report concludes that moderate coffee consumption can be incorporated into a healthy lifestyle.

Read more: http://www.dailymail.co.uk/news/article-2961611/Government-panel-recommends-FIVE-CUPS-coffee-day-ward-heart-disease-liver-cancer-Parkinson-s.html#ixzz3SbBzBXpr
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Although, individuals who do not consume java should not start consuming it for health benefits alone.

Tom Brenna, a member of the Dietary Guidelines Advisory Committee and a nutritionist at Cornell University, said the findings put a new spin on coffee, which has traditionally been panned by health experts.

 I don’t want to get into implying coffee cures cancer. But there is no evidence for increased risk, if anything, the other way around.

Tom Brenna, a member of the Dietary Guidelines Advisory Committee  

'Coffee’s good stuff,' he told Bloomberg, adding: 'I don’t want to get into implying coffee cures cancer - nobody thinks that.

'But there is no evidence for increased risk, if anything, the other way around.' 

The Dietary Guidelines Advisory Committee helps the U.S. government formulate dietary guidelines that affect millions of American diets, from school lunches to food package labels.

The U.S. is the one world’s biggest consumers of coffee. 

According to a 2014 survey by National Coffee Association, 61per cent of Americans sip on a cup of the good stuff each day. 

Despite the focus on coffee, the Dietary Guidelines A

dvisory Committee's latest report sticks to the basic message of the previous guidelines in 2010: Eat more fruits and vegetables and whole grains; eat less saturated fats, salt and sugar.

The 2015 dietary guidelines are set to be issued by the end of the year. 

DIETARY GUIDELINES ADVISORY COMMITTEE'S 2015 REPORT: FINDINGS  

EGGS ARE OK

The report says dietary cholesterol now is 'not considered a nutrient of concern for overconsumption.' This follows increasing medical research showing the amount of cholesterol in your bloodstream is more complicated than once thought.

The committee says available evidence 'shows no appreciable relationship' between heart disease and how much dietary cholesterol you eat, but it still recommends eating less saturated fat. As in previous years, the report advises limiting saturated fats to 10 percent of total calories.

The panel doesn't give a specific recommendation for how much cholesterol - or eggs - a person may eat.

WATCH THE ADDED SUGAR

Added sugars should be around 200 calories a day - about the amount in one 16-ounce sugary drink, says the advisory committee, which is made up of doctors and nutritionists.

The recommendation is part of a larger push in recent years to help consumers isolate added sugars from naturally occurring ones like those in fruit and milk. Added sugars generally add empty calories to the diet.

Americans now get about 13 per cent of their calories from added sugar, or 268 calories a day, the committee says. Older children, adolescents and young adults generally take in more. The committee recommends ten per cent, which is 'a target within reach,' says Miriam Nelson, a Tufts University professor of nutrition who served on the panel.

Sugary drinks should be replaced with water instead of those with low-calorie sweeteners; there's not enough evidence those drinks can help with weight loss, the committee advises.

A SOFTER APPROACH ON SALT

Sodium adds up quickly. A turkey sandwich and a cup of soup can average about 2,200 milligrams. That's just under the committee's recommendation of 2,300 milligrams a day for all people, even those most at risk for heart disease.

The 2010 dietary guidelines had recommended those at risk for heart disease limit sodium to 1,500 milligrams. The new report said lowering to that amount can still be helpful for some. But the new advice follows a 2013 report by the Institute of Medicine that said there is no good evidence that eating less than 2,300 milligrams a day of sodium offers benefits.

With the average American eating more than 3,400 milligrams daily, the panel recommends at least trying to reduce sodium intake by 1,000 milligrams a day if the goals are unattainable.

Alice Lichtenstein, a member of the panel and a professor at Tufts University, said the new recommendation 'puts the focus where it should be.' Get sodium intake down, and fine-tune the numbers as more evidence comes in. 

EAT A PLANT-BASED DIET

The panel recommends eating more vegetables, fruits, whole grains, legumes, nuts and seeds. A plant-based diet is 'more health promoting and is associated with less environmental impact' than the current U.S. diet, which is high in meat.

The report stops short of telling people not to eat meat, saying 'no food groups need to be eliminated completely to improve sustainability outcomes.'

Overall, the panel advises a diet lower in red and processed meat, and in a footnote says lean meats can be part of a healthy diet. The North American Meat Institute criticized the report, saying the health benefits of lean meat should be 'a headline, not a footnote.'

The meat recommendations in particular may prompt pushback from Capitol Hill. Last year, Congress noted the panel's interest in the environment and directed Agriculture Secretary Tom Vilsack 'to only include nutrition and dietary information, not extraneous factors' in final guidelines. 

http://health.einnews.com/article/251338630/RajYMXpGih9Q9FtB
Read more: http://www.dailymail.co.uk/news/article-2961611/Government-panel-recommends-FIVE-CUPS-coffee-day-ward-heart-disease-liver-cancer-Parkinson-s.html#ixzz3SbBkiTHM 

Michael J. Fox Foundation Analysis Reveals Gaps between Research Volunteers and Parkinson's Clinical Studies

FoxFeed Blog

Fox Trial Finder Analysis Sheds Light on Parkinson’s Studies and Volunteers

Posted by  Christina Brdey, February 23, 2015

The first peer-reviewed paper on Fox Trial Finder — MJFF’s online matching clinical trial tool — published in the Journal of Parkinson’s Disease profiles a rich database of volunteers poised to contribute to breakthroughs in Parkinson’s treatment.

Fox Trial Finder (FTF) helps bridge the gap between the Parkinson’s community and the clinical trials that need them. Users (both those with and without Parkinson’s) create a profile and are matched with local studies looking for volunteers like them.

“I strongly believe that those of us with Parkinson's disease owe it to our children and grandchildren to do whatever possible to find better treatments and, hopefully, a cure. The only way is to participate in clinical research,” said user Gary Rafaloff of Malboro, New Jersey. “Fox Trial Finder is, by far, the easiest and most efficient means of finding studies that are most suitable for each volunteer's personal requirements and interest.”

The paper reports on MJFF’s analysis of FTF registrants (26,231) and studies (329 at 627 sites) in the United States as of July 2014. Among baseline findings:

• Family History – Of 19,243 registrants with Parkinson’s, only 12 percent listed an immediate family history of the disease — not unexpected given that the vast majority of Parkinson’s cases are idiopathic (cause unknown). In contrast, 49 percent of control registrants reported a familial connection. This finding highlights the motivating nature of a family connection for spouses, adult children and other caregivers who can play a key role in research as control volunteers.
• Time of Diagnosis – The average time since diagnosis was 5.7 years and the average age at diagnosis was 58 years. Less than five percent reported young-onset Parkinson’s. Interestingly, time since diagnosis did not appear to be a major eligibility factor in the listed studies.
• Disease Progression – Most studies were recruiting for patients with a Hoehn & Yahr score (a measure of disease progression) of 1 or 2, but even those with a score of the highest 5 were eligible for 66 percent of listed studies. Patients who had undergone deep brain stimulation were eligible for 73 percent of studies.
• Geographic Location – Analysis revealed a geographical imbalance of volunteers and studies. Only 10 of the top 20 areas of study sites were also in the top 20 areas of volunteers. Some major areas of research — Portland, Oregon; Cleveland, Ohio; Boston; and Birmingham, Alabama — were not in the top 20 of patient saturation. Such distribution makes the case for increased outreach to potential volunteers in hotbeds of research and for tele-research methods to involve willing participants in areas without recruiting studies.
• Age Eligibility – The average minimum age for study inclusion was 21 while the average maximum age was 95.

Since its launch in 2011, FTF has registered more than 40,000 potential research volunteers and lists nearly 450 ongoing Parkinson’s studies in nine countries from Australia to Germany. What’s more important is that both volunteers and study sites are engaging with each other through the tool.

“Fox Trial Finder is a very user-friendly tool and has increased the number of patients screened and enrolled into studies I work on,” said Grace Bwala, a research coordinator at Massachusetts General Hospital.

https://www.michaeljfox.org/foundation/news-detail.php?fox-trial-finder-analysis-sheds-light-on-parkinson-studies-and-volunteers

Parkinson's disease grandad denied 'wonder drug' that could reverse years of damage on his body

• 15:21, 23 February 2015
• By Antonia Bannister

Edward Reilly has been told the NHS will not pay for him to at least try the breakthrough drug Duodopa which could ease his symptoms

A Parkinson's disease sufferer has been denied access to a so-called wonder drug that could reverse the effects of years of damage on his body.

Edward Reilly, known to his friends as Eamonn, was diagnosed with the progressive disease 16 years ago.

The Coventry grandfather has now been told the NHS will not pay for him to at least try the breakthrough drug Duodopa which could ease his symptoms.

Duodopa – which is only prescribed as a ‘last resort’ treatment option where other medications have failed – is said to help control involuntary movements, night-time symptoms and help curtail 'off' periods.

But last year NHS England announced the drug would not be routinely available on the NHS, meaning doctors have to make long and bureaucratic applications on a case-by-case basis.

At present Eamonn, from Eastern Green, suffers with near paralysis at night, reports the Coventry Telegraph.

Suffering: Eamonn and Carol with the letter from the NHS

His wife Carol said: “He hardly moves after 8.30pm. He also has a lot of off time when he can’t move his legs.”

The cost of treatment using Duodopa for one year would be £26,000.

Duodopa is a last resort treatment for Eamonn who has been declared unsuitable for all other treatment, due to his poor balance which has seen him hospitalised before.

But when applying for funding for the drug, the 71-year-old was told that his situation was not exceptional enough to warrant the NHS paying for his treatment.

Carol said that trialing Duodopa is their last hope and could be ‘life-changing’ for her husband.

She said: “It would mean he could go and see his grand-daughter in her shows.

“At the moment due to access and him not being able to get comfortable he can’t see her perform anymore.”

The couple are being backed in their fight by local politicians.

Councillor Steven Thomas, whose own grandfather suffered with Parkinson’s Disease,has championed the case.

Carol said: “I saw Councillor Thomas at a carol concert and told him about what had happened.

“He just picked up the ball and ran with it.”

Coun Thomas, who is chair of the city’s health and social care scrutiny board, said: “Eamonn's case is one of the worst I have ever encountered of scientific advances providing hope to patients, only for NHS rationing to snatch it away.

“Eamonn and Carol have worked hard all their lives to contribute to the NHS, only to find that they've been badly let down when they need to get something in return.”

Geoffrey Robinson, Labour MP for Coventry North West, signed a parliamentary early day motion to have the issue of access to Duodoba for Parkinson's sufferers discussed in the House of Commons.

Carol and Eamonn are now exploring any other avenues they may have on how to gain access to the drug. Carol said: “If anything we just want to raise more awareness about Parkinson's.”
http://health.einnews.com/article/251389690/YKEU0_JcMKvR0QTe

Wife of Coventry Parkinson's sufferer shares her heartache in a letter to the NHS - Continued

• (Continued)
  
  the NHS
  Eamonn’s wife, Carol, wrote this heartfelt letter to the Coventry and Rugby Clinical Commissioning Group over her husband’s case:
  
  

  

  
  
  
  

  “Our lives with Parkinson’s Disease is gradually getting worse and Duodopa was a beacon in the darkness. To be refused funding is inhuman.
  My husband, Eamonn, is in bed between 9 and 10pm every night because his medication stops working.
  His sleep pattern is disturbed. He needs to pass water several times a night and as he cannot get out of bed, I am required to assist, which disturbs my night’s sleep also.
  When he needs to use the toilet, I have to physically pull him from his bed, put him in a wheelchair, push him along the landing to the bathroom, assist where necessary, then take him back to bed. This is a mammoth task and is taking its toll on both of us.
  His first medication is at 5am after I dress him. Once on the move, Eamonn manages to go downstairs for his breakfast, which I have prepared the night before.
  I can then usually manage 3 hours undisturbed sleep.
  Eamonn was a very active person pre-Parkinson’s – playing squash, badminton, swimming daily and cycling.
  He was always very fit. Being unable to participate in any of these pastimes has made a great change to his life.
  As a family we had caravan holidays, trips abroad and walking and rambling holidays in the country was a big favourite.
  We now manage short shopping trips where Eamonn always has to use a four-wheel walker or a mobility scooter.
  We have had holidays in special accommodation, with disabled facilities for a few days at a time. But evenings out are a thing of the past.
  Balance is a great worry as Eamonn falls constantly which has resulted in needing an A&E visit and treatment on more than one occasion.
  It was due to this problem that DBS was ruled out and Apomorphine did not work.
  With the possibility of a new drug, Duodopa, there was hope of change and out lives possibly having some normality returned.
  Where do we go from here?"
  
  
  05:45, 23 February 2015
• By Antonia http://health.einnews.com/article/251319996/VzlNnORM32ufhWRp