TRANSLATE

Welcome to Our Parkinson's Place


I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's
diseases as well and thought it would be nice to have a place where
updated news is in one place. That is why I began this blog.
I am not responsible for it's contents, I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish. This is for you to read and to always keep an open mind.
Please discuss this with your doctor, should you have any questions, or concerns. Never do anything without talking to your doctor. I do not make any money from this website. I volunteer my time to help all of us to be informed. Please no advertisers. This is a free site for all.
Thank you.


Saturday, March 4, 2017

The DWP Intergenerational Dance Project Showcase: A Stunning and Profound Dance Commentary on Aging and Youth

March 4, 2017 at Randolph Theatre, 1:30pm.



Feb 13, 2017 (Toronto) - "I always assumed that seniors were fragile before these workshops, when in reality they are some of the strongest people I know. Disabilities are not only physical. This is one of the best things I’ve ever been a part of.” - Intergenerational Dancer, Cassie White, age 22.

Since the spring of 2016, the Dancing with Parkinson’s (DWP) Intergenerational Dance Project has brought two groups of seniors – those living with Parkinson’s Disease and others seeking greater community engagement – together with a group of youth dancers from Randolph Academy for the Performing Arts, to collaborate on a series of free, monthly dance workshops. 

With its goal of tackling ageism, which often leads to greater social isolation for seniors, the project bridges the generational divide by encouraging its young participants to both support and learn from the elders involved. And, as intergenerational dancer, Glen Harris, says, "For the elders, to see the hopes and dreams in the young participants, and to feel… again that we too have hopes and dreams to be realized."


Dance is an inclusive art that has the capacity to transcend differences or barriers - including, age, socio-economic status, and physical or cognitive abilities. And, that is exactly what this pioneering troupe of 30 seniors and youths exemplify in their original, collaborative choreographies that shine a light on the meaningful concerns and playful parallels across generations.  

Facilitated by dancer and choreographer, Anisa Tejpar, and Artistic Director, Sarah Robichaud, founder of Dancing with Parkinson's, the project culminates in the DWP Intergenerational Dance Project Showcase, Saturday March 4,, 2017, at Randolph Theatre736 Bathurst St. Showcase begins at 1:30pm (Doors open, 12:30). No ticket required. Wheelchair accessible. For information visit www.intergenerationaldance.com


The DWP Intergenerational Dance Project is produced by Dancing with Parkinson's with the support of the City of Toronto through the Toronto Arts Council, in affiliation with the Randolph Academy for the Performing Arts and funded in part by The New Horizons for Seniors Program, designed to help ensure that seniors benefit from, and contribute to, the quality of life in their communities through social participation and active living. 

We welcome members of the media to attend our rehearsals and public performance for what might be one of the most profound and meaningful commentaries on youth and aging today: 
  • Workshop Rehearsal, Sun. Feb. 26th 2:20 pm, Randolph Academy, 736 Bathurst St. 
  • Dress Rehearsal, Thurs. March 2nd 3:10-4pm, Randolph Theatre, 736 Bathurst St. 
  • Final Rehearsal, Sat. March 4th 11:30am-12:30, Randolph Theatre, 736 Bathurst St. 
  • Showcase, Sat. March 4th 1:30pm, Randolph Theatre, 736 Bathurst St. 
The showcase will be followed by an audience inclusive movement as well as a Q & A with the seniors, youth and organizers.


"Learning from the seniors has opened my eyes to what the future may hold for me. It has made me realize how important it is to live presently and to connect with others,” says Sarah Stewart, Intergenerational Dancer, age 21.

“I learned not to dwell on my problem, but to use the strength of all the other participants to strengthen myself both physically and mentally” - Glenn Harris, Intergenerational Dancer, age 68

"Words don't cut it." - Patricia McPhail, Intergenerational Dancer, age 70


Media Contact, Interviews & Print-Ready Images: Miriam Schacter, Project Manager
416-939-1672


Newscasts, radio coverage, introduction video and project info at: www.intergenerationaldance.com or find more information at www.dancingwithparkinsons.com

http://www.parkinson.ca/site/c.kgLNIWODKpF/b.9515651/k.3313/The_DWP_Intergenerational_Dance_Project_Showcase__A_Stunning_and_Profound_Dance_Commentary_on_Aging_and_Youth.htm

Meet the woman who can smell Parkinson's disease

March 4, 2017    

Joy Milne, right, gives the author a sniff



When Les Milne was diagnosed with Parkinson’s diseaseaged just 45, his wife Joy was, understandably, devastated. But her sadness wasn’t just down to the fact her husband was in the grip of such a terrible illness but that, when she’d noticed a change in his smell 12 years earlier, she hadn’t realised the two things might be connected. 
Upon first noticing a “sort of woody, musky odour” Joy “started suggesting tactfully to him that he wasn’t showering enough or cleaning his teeth,” she recalls. “He clearly didn’t smell it and was quite adamant that he was washing properly.”
Joy, a former nurse, let the issue lie, occupied with the far more pressing issue of her husband’s rapidly changing character. “He wasn’t the man I’d known since I was 16. About eight years before he was diagnosed he started suffering from mood swings, with bursts of anger which left me dreading what might come next.”
When Les was eventually referred for a brain scan, he was told that his symptoms indicated a diagnosis of either a brain tumour or Parkinson’s, which affects one in 500 people in the UK. As medical professionals - Les worked as an anaesthetist - both knew just how serious the diagnosis was, though Joy admits that it was a relief to have one at all.
Forced to retire five years later, the pair moved back to Perth from Cheshire, with his growing inability to sleep and diminishing motor skills seeing Les, a former water polo player for Scotland, give up the swimming he loved to do every day. “He was just a completely different person. It was devastating to watch" Joy, now 67, says.
It wasn’t until Joy attended a Parkinson’s UK awareness lecture in 2012, 17 years after her husband’s diagnosis, that the notion of the disease having a particular scent cropped back up. During the session by Dr Tilo Kunath, the charity’s Senior Research Fellow, Joy asked why people with Parkinson’s smell different. “Parkinson’s sufferers often lose their sense of smell so I thought that’s what she was referencing initially,” he remembers. “She clarified that she was asking about a unique body odour, which took me by complete surprise.”
Joy first noticed her unique ability as a student nurse CREDIT:  CHRIS WATT
It was only months later when Dr Kunath mentioned Joy’s observation to a colleague that he realised a question so specific may belie a unique gift. “I tracked her down and we did a test where she smelled 12 T-shirts – six having been worn by Parkinson’s sufferers and six without,” he explains. “She identified seven of the T-shirts as being from Parkinson’s sufferers and we thought ‘11 right out of 12 – not bad.’”
Eight months later the seventh person, who had been a ‘healthy’ control subject at the time, came to Dr Kunath’s team saying they had been diagnosed with the condition.
Though Joy doesn’t claim to be able to smell Parkinson’s with total accuracy, news that she had done so on the clinical test proved the extent of her skill, which she first noticed around the age of 21. “I remember when I was a student nurse, I mentioned to a ward sister about the smell of illness, referring to liver cancer” she says. “She was clearly completely baffled.”
Her colleague’s reaction was such that she didn’t mention the notion again until she started going to a Parkinson’s support group with Les, where she realised the other sufferers had the same musky odour as him. Many medical practioners are aware of a particular smell with some cancers and conditions such as diabetes, which can make the sufferer’s breath smell like nail varnish remover, but it is usually anecdotal rather than driving medical research.
The smell of Parkinson’s sufferers is always the same, Joy explains, but to different degrees depending on factors such as how long they’ve had the condition and whether their medication is effective. It may sound like a curse, but she doesn’t find herself plagued by potentially life-threatening scents while walking down the street - the perfect conditions for her to recognise an affliction are to smell a garment that has been worn for 24 hours without deodorant or perfume; ideally a white item, as “colours have scents.”
Scientists now believe that changes in the skin of people with Parkinson’s produces a particular odour linked to the condition, long before developing the usual symptoms such as tremors and changes in speech. They hope to find the molecular signature responsible for the odour and then develop a simple test such as wiping a person’s forehead with a swab, research which Prof Perdita Barran is leading at Manchester University.
“Parkinson’s exacts a huge societal cost as well as being devastating to the patient and their family,” she says - the NHS spend on in-patient admission for the disease has been estimated at £194m per annum, though this does not account for the costs of medication, carers or treatment in care homes.
Joy features in Incredible Medicine: Dr Weston' s Casebook CREDIT:  BBC
“As yet there is no cure for Parkinson’s, though preventative medicines are currently being developed. The earlier Parkinson’s is diagnosed the more we can do, as typically too many neurons in the brain are lost – irretrievably – by the time of diagnosis. If we can determine what it is Joy is smelling then we could find a completely different way of treating the disease and change a currently devastating prognosis.”
Les passed away in 2015 after a 20 year battle with the disease. The rest of Joy’s friends and family - they had three sons, now all in their 30s - have been less than forthcoming in asking her to give them the smell test. “No-one asks me - they go the opposite way and say don’t sniff me!” 
Though Joy wishes she would have known the real reason why Les’s smell changed far earlier than his diagnosis, she is hopeful that working alongside medical professionals will yield important results. A few people with highly specialised senses of smell have been identified in the United States, though none with Joy’s ability to smell multiple conditions, so she could hold the key to a major breakthrough.
White garments without deodorant or perfume are easiest for Joy to sniff CREDIT: CHRIS WATT
Since news of her skill was picked up by the media two years ago, Dr Kunath has been contacted by 12 people he believes may be able to detect Parkinson’s by its odour, though “this is all from correspondence, not from direct testing.”
Just before Les died he realised he had not, as a doctor, given a full account of what this disease had done to him and others. With Joy’s help he started to write a diary of what had actually happened to them, desperate to tell people of the devastating effects this disease has and the importance of early diagnosis. 
Both Dr Kunath and Joy are determined to change this suffering for others. “Early detection will be vitally important in the near future,” he explains. “There are massive global efforts on-going to identify therapies to stop the progression of Parkinson’s, but their real impact will be experienced when they are given to people in the earliest stages of the condition before they are diagnosed. They could prevent the classic early motor symptoms from manifesting so the person never becomes a ‘Parkinson’s Disease’ patient”. Now, with Joy’s skills at hand, there is hope.
Incredible Medicine: Dr Weston's Casebook continues on BBC Two on Wednesday at 9pm.
http://www.telegraph.co.uk/women/health/meet-woman-can-smell-parkinsons-disease/

Anna Brotherson almost died while competing in the Rottnest Channel Swim

March 4, 2017

Fremantle Sea Rescue work on Anna Brotherson during the Rottnest Swim. Picture: Fremantle Sea Rescue


WHEN Anna Brotherson decided to swim to Rottnest to raise funds for Parkinson’s WA after her father’s diagnosis, she never imagined it would nearly kill her.
Anna Brotherson
The super-fit mother of three was just 1km from completing the solo 19.7km crossing last Saturday when she suddenly found it difficult to breathe.
The 43-year-old had experienced the pain barrier before, having made the swim in duos and teams previously, but she knew this time there was “something wrong” with her lungs.
She had been in the ocean for eight hours when her husband, Kim, who was paddling alongside, jumped into the water to assess her more closely and told her to stop.
At that moment, Anna fell unconscious and started to sink.
She had suffered a swimming-induced pulmonary oedema, which occurs when the lungs suddenly fill with body fluids. Her lung capacity was at 10 per cent and core body temperature had plummeted to 33C.
A mad scramble to grab Anna and pull her on board the support boat followed. First aid was started by her crew, which included two nurses — sister Sian Kelly and friend Natalie Male — before Fremantle Sea Rescue quickly arrived.
“I was close to the wind. A respiratory specialist told me later that I was minutes from death,” Anna said on Friday, six days after the swim. “But it was just my psyche not to stop. Everyone told me you have to dig deep, especially between 17 and 19km, and just keep swimming.
“Those who don’t quit, make it. So in my mind I thought, ‘I’m not cold, I don’t have hypothermia, I’m not going to quit, I’m going to make it’.”
The rescue crew inserted three intravenous lines to stabilise her, made sure her airway was as uncompromised as possible and rushed her to Fremantle then transferred her to Fiona Stanley Hospital.
Her family, who had been waiting for her on the island, made their way to the hospital.
When she finally regained consciousness after 45 minutes at the emergency department, Anna wondered what all the fuss was about.
“I knew it had gone south but I didn’t realise the severity of the situation. I just thought I was in emergency to be monitored,” Anna said as she recovered at home.
Anna urged others to make themselves aware of the risks of pulmonary oedema.
Having raised $21,500 for Parkinson’s WA, Anna said she would consider competing in the Rotto swim again, most likely as part of a team or duo.
http://www.perthnow.com.au/news/western-australia/anna-brotherson-almost-died-while-competing-in-the-rottnest-channel-swim/news-story/14e26d578199d603a819613229cc6f43

Rehab center sensory room improves patients' quality of life

March 4, 2017

ADVANCE FOR SATURDAY, MARCH 4, 2017 - In this Tuesday, Feb. 14, 2017 photo, fiber optic cables lie on a seat in the new sensory room at the Oakwood Health and Rehabilitation Center at Bedford Memorial Hospital, in Bedford, Va. (Lathan Goumas/News & Daily Advance via AP


BEDFORD, Va. (AP) — What was dreamt up as a getaway room for patients with dementia and Alzheimer's and Parkinson's diseases now has become a favorite spot for all patients as well as some staff at Oakwood Rehabilitation and Health in Bedford.


Oakwood is located on the campus of Bedford Memorial Hospital and provides intermediate and long-term care for patients needing recovery, rehabilitation and therapy.
The new sensory room, which opened this month at the rehab center on Oakwood Street, is the brainchild of Tracy Chisholm, director of nurses for the facility. It has been a dream of hers to open one for about 18 months.



A sensory room is used to stimulate the sensory system through sight, sound, smell and touch.
Its primary target groups are those suffering from dementia, Alzheimer's and Parkinson's — disorders affecting the brain.





However, Chisholm said the room affects just about everyone who walks into it, regardless of health, age or ability.
Chisholm gathered information on sensory rooms and presented it to the auxiliary, asking for funding. The auxiliary is a part of volunteer services that raises funds for the center every year.
Denise "Dede" Edwards, director of volunteers and the auxiliary, said when Chisholm presented her with the idea for a sensory room, she was "blown away."





"I was sold," she said. "I presented it to the auxiliary board with a lot of excitement, and they bought into it."


The auxiliary presented Chisholm with about $12,000 last year.
Two weeks ago, Edwards brought the members of the auxiliary to the sensory room for the first time since it was completed in mid-February.




"We feel proud to do this and have had the opportunity to buy into this," she said.
The room offers fiber optic cables coming out of a bean bag, cushions on the floor, aromatherapy oils, a heated massage chair, a disco ball that projects lights and a bubble tube.
The room is there for all patients, regardless if they are there for a short rehab visit or have settled in as a long-term resident.



"Studies have shown that these rooms can not only decrease discomfort experienced by patients, but they are also noted to increase engagement," Chisholm said. "Clinically we expect to see a decrease in symptoms patients traditionally suffer from, (including) apathy, agitation and anxiety, while simultaneously improving activities of daily living."



Just in the past few two weeks of utilizing the room, staff has experienced a varied range of resident responses, from excitement associated with the stimulation to relaxation from the calming sound of the bubbles and dim lighting.



"Honestly we are elated with either outcome," Chisholm said. "The intention is engagement and increased quality of life, regardless of how that translates to the individual."
Because the room is so new, Oakwood's Communications and Marketing Director Christy Lucy said there were no patients or family members able to speak with The News & Advance about their experiences in the room.



She said the greatest benefits to patients are an improved quality of life and a sense of escape.
The average patient stays in the room for about an hour, but depending on their attention span, some will stay for five minutes, 30 minutes or for more than an hour. Sometimes a patient will fall asleep, according to Chisholm.



Chisholm and Kim Kirsch, assistant director of nurses, said there is a patient at Oakwood who is very nervous in nature and is non-verbal in communicating her needs, but she will come into the sensory room for an hour and watch the bubbles, touch the fiber optics and fall asleep in her chair.
"It was precious," Chisholm said. "And that's exactly why we did this."

http://www.newcanaannewsonline.com/news/article/Rehab-center-sensory-room-improves-patients-10975598.php#photo-12484997

Gym workout can stop the shakes for Parkinson's sufferers

March 4, 2017

The Studio Gym, Clacton teamed up with Clacton's Parkinson's Uk, providing help after they got a grant. Gym team leader Chris Harris encourages the group in their session..


SUFFERERS of Parkinson's disease are heading down to the gym in a bid to combat the illness.
Almost 40 members of Parkinson's UK in Clacton have been hitting the fitness equipment at the Studio gym, in Telford Road, in a groundbreaking scheme to improve their health.
It can even help stop some of the symptoms of the disease.
Group fundraiser Clive Harre, 69, who has Parkinson's, uses the gym twice a week and says the exercise stops him from shaking for the rest of the day.
"Those days I very rarely shake, which is incredible," he said.
"It's been proven that exercise is beneficial to people with Parkinson's.
"When you exercise it makes adrenaline and it seems to calm the shaking, although it may not happen to everyone.
"My wife said I should go every morning because it make such a difference."
The charity's HQ gave the group a £500 grant to pay for members to use the gym for free for a month.
The sessions are specially tailored to their needs.
"We've had good, positive feedback - they are all finding it beneficial," said Mr Harre, of Great Clacton.
"One person said they hadn't worn trainers on their feet since they were 18 and another said they were quite scared at first but then loved every minute.
"They can go as many times they like in the first month and some of our carers go along as well.
"It's all geared to what you are capable of.
"I use the treadmill and then the cross trainer and leg pushes and then a little bit of rowing."
"I've been going since October and wouldn't miss it for anything now."

http://www.maldonandburnhamstandard.co.uk/news/north_essex_news/15133130.Gym_workout_can_stop_the_shakes_for_Parkinson__39_s_sufferers/#

How 'Serviceable' Are Service Animals?

Alexandria Bachert
March 03, 2017

The Supreme Court favored a girl and her dog


Service dogs have been used by the vision-impaired since the late 1920s, but more recently people have begun to rely on monkeys, miniature horses, and even rats to cope with conditions ranging from seizure disorders to PTSD to autism.
While most agree that service animals are an effective and affordable alternative to medications for certain conditions, the increase in certified "helpers" does not come without controversy.

Several incidents -- such as a Supreme Court case involving a girl with cerebral palsy and her service dog -- have people questioning what conditions should qualify for using service animals and when.

It's been argued that animal assistance reduces incentive for people with disabilities to be self-reliant -- to what extent is that valid?

Jenna Saul, MD, FAACAP: "This argument feels reminiscent of the rather naïve judgment that medications for mental health issues are a "crutch" rather than recognizing that they can significantly alleviate symptoms and allow improved function. When emotional service animals are offered in conjunction with other therapies, the role of the animals is to decrease experiential avoidance and can help a patient set goals to achieve optimal functioning."

Jessica Smidt, Healing Enhancement Therapy Coordinator at Mayo Clinic: "I don't think this is valid in most cases. True assistance animals are trained to do services or tasks for people with diagnosed disabilities. The tasks they perform are tasks their handler may not ever be able to do on their own, no matter how hard they try."

Cheryl A. Krause-Parello, PhD, RN, FAAN, University of Colorado: "The argument is inherently flawed. It assumes that individuals with disabilities' main priority should be to become self-reliant and that this should be 'incentivized.' In reality, the main priority for many individuals with disabilities is to live a fulfilled day-to-day life in as healthy a way as possible, whether that involves reliance on medication, therapy, or other interventions to achieve this."

Jeanne Eichler, MOT, OTR/L, Saint Louis University: "Assistance animals are trained to carry out roles that the person may not otherwise be able to perform without assistance or cannot perform efficiently or safely. Part of being independent is to have strategies to maintain personal safety, both with and without the assistance animal. In some cases, without the help of the assistance animal, safely performing a task may not be possible."

Donna A. Baker, CTRS, Emory Rehabilitation Hospital: "Service animals allow a disabled individual to perform activities of daily living more independently. Having an animal that is trained to open a door, retrieve dropped items, or help someone off the floor following a fall can mean the difference in being able to live independently or having to rely on someone else."

Is "emotional support" a valid role for a service animal? Should there be limits for what qualifies as a service animal, and, if so, how should they be enforced?

Smidt: "Emotional support animals are not legally considered service animals. They provide comfort and companionship for individuals but they are not designed to be out in public like service animals. Emotional support animals are beneficial to people who need a friend, daily motivation, or are dealing with depression or anxiety, but they are not meant to go everywhere in public like assistance animals."

Krause-Parello: "A service animal is specifically trained to perform tasks that aid in mitigating the disability of an individual. An emotional support animal is not required to have any such training. However, they can perform tasks that promote the emotional support of individuals with disabilities. Emotional support is a fully valid role for a trained service animal."

Saul: "There are significant differences between emotional support animals and service animals. Emotional support animals are not trained, but simply provide emotional support to a person with a disability. They cannot go out in public where dogs are normally prohibited."

Eichler: "Some people function best with a companion who they feel safe with. Many disabilities are 'hidden' and can be incredibly challenging because they may not be completely 'tangible.' Because of this, people using animals for emotional support may be regarded differently from people who have obvious disabilities. As a clinician who has recommended assistance animals for anxiety, depression, and difficulty socializing with others, I have seen these animals make life accessible where quality of life was once poor."

Baker: "Mental or psychological disabilities can be every bit as 'crippling' as a physical impairment. Having a service animal can provide an emotionally disabled person the confidence to function in an environment that they could not otherwise tolerate. We need guidelines for what qualifies an animal as a true service animal in order to prevent just anyone from getting their animal certified -- [such as] providing medical proof of need and proof of proper training and certification."

On the flip side, what problems with discrimination against service animals and the people using them have you seen, and how can those problems be overcome?

Baker: "These cases are related to either fear of the animal or someone not trusting that the animal is a 'real' service animal. Many people are afraid of animals and that is not something that is going to change, but knowing that an animal has very specific training and is there to help can often alleviate some of these fears."

Eichler: "People do not understand the etiquette for being around assistance animals. If people were openly educated about the roles of these important animals in the lives of our family members, friends, associates, and neighbors, stigmas and judgments would lessen. Better general awareness of how life-changing an assistance animal can be for another person is an important step in this direction."

Smidt: "We need to educate the public and business owners on what they can ask and how to identify true service animals. We need to educate doctors and counselors on when and why to prescribe an emotional support animal and also have them understand the difference between an emotional support animal and assistance animal so they can inform their patients."

Krause-Parello: "There is a disconnect between many public establishments and individuals with service animals -- more often than not derived from a lack of understanding on the part of the establishment of the rights of the individual with the disability. Federal and state-level efforts, as well as social media campaigns by individuals, businesses, and NGOs, should be supported in order to perpetuate advocacy and the spread of education and awareness about the rights of service animals."

Saul: "I have seen some schools resist having service animals present in their buildings which is a violation of ADA law. I have also seen service dogs whose families have not maintained their training, and as a result, the dogs cause damage and disruption in the settings that they are permitted to be in. The down side to this is that it increases discrimination against service dogs, and for clinics who have traditionally welcomed service dogs and who have followed ADA laws, this creates some significant challenges."

http://www.medpagetoday.com/Neurology/GeneralNeurology/63576?xid=nl_mpt_DHE_2017-03-04&eun=g972365d0r&pos=0