The Ontario Neurodegenerative Disease Research Initiative (ONDRI) is looking for volunteers who reside in Ontario to take part in a study.
I participated in this study. 10 days may sound like a long time but for me it went quick. There was very little discomfort wearing the sensors the occasional tug on a chest hair was about it. Everyone involved were so helpful, patient and made the process so easy. The report was to me amazing so much information from these little sensors. I did it as a stroke patient but if my information can help someone with the other brain diseases and vis versa it was worth a couple chest hair tugs.
The study is called, Health in Aging, Neurodegenerative Diseases and Dementias in Ontario (HANDDS-ONT) “The study is focused on finding new ways to diagnose and improve the lives of people living with neurodegenerative diseases and/or stroke. Participants also receive some insight into their own health and activities.”
The data recovered is stored securely. The study take 8 weeks with 5 virtual study visits with their research co-ordinator.
The only time you will have to leave the comfort of your home is to visit a Life Labs location close to you.
You will receive a package containing the 3 sensors paperwork for the blood tests, a log sheet, information about the study and consent forms.
All virtual visits are arranged at your convenience. After you receive your package a virtual meeting with your research co-ordinator will be arranged to assist you with putting on the sensors, 1 on the wrist, 1 on the ankle and 1 on your chest. They will be worn for 7-10 days to gather information about daily behaviors such as sleep, walking and physical activity. Sensors can be removed for showering, bathing and swimming.
“During the study participants complete surveys on sleep, mood, and quality of life.”
When it comes time to remove the sensors another virtual visit will be arranged to guide you and pack up the return box with the sensors, surveys and paperwork.
“Later you will receive a personalized health and activity report from the period in which the sensors are worn summarizing different aspects of daily living such as walking, sleeping and physical activity.”
Participants will meet with a member of the study team to discuss their report that contains data from the sensors.
“The HANDDS-ONT study is recruiting a wide variety of Ontario adults including individuals living with Alzheimer’s disease, mild cognitive impairment, Amyotrophic Lateral Sclerosis or ALS, Parkinson’s Disease, Frontotemporal Dementia, and or those who are post stroke.”
“Also looking for adults living in the community without a diagnoses of a neurogenerative disease/stroke.”
For more information on how you can get involved:
Call: 437-882- 8335
You know how much I love researchers and the work they do. In my favourite “BBC”s Science Focus Magazine” newsletter “Lunchtime Genius” 25th February, 2022, Jason Goodyer’s article titled “Using Magnets to Influence the Brain Could Lead to Revolutionary New Depression Treatment.”
This article caught my eye for two reasons. I suffered from depression a few years ago and this is a possible new treatment. Stroke survivors are at a higher depression risk after stroke.
Researchers Dr. Yicharo Yu and Prof. Mark Lythgoe from University College London, describe their work. We have star-shaped brain cells called Astrocytes. “A type of Glial cell a non-neuronal cells that are found in the brain and spinal cord.”
Dr. Yicharo Yu. “They do many logistical maintenance-type jobs in the brain. But in recent years, as we’ve learnt more about these cells, we’ve found they have many other functions, such as regulating cognitive behavior.”
Using micromagnets they can focus on specific parts of the brain to manipulate Astrocytes inside the brain. All from the outside no invasive brain surgery with no side effects. Excuse my simplification, the micromagnets stretch the Astrocytes releasing ATP, Adenosine Triphosphate and signalling molecules are released coming in contact with the neurons.
This procedure could possibly replace deep brain stimulation (Surgical Procedure) to treat Parkinson’s, epilepsy and depression.
Dr. Yicharo Yu “One is depression, we are very interested in that because there has been some very robust evidence in animal models to show ATP from Astrocytes has very strong anti-depression effects.”
The next paragraph by Prof. Mark Lythgoe is very important. “it could be used post-stroke. The release of the ATP would hopefully mop up some of the toxic molecules that lead to inflammation and therefore reduce the overall size of the stroke damage. This could be the same for epilepsy as well. Epilepsy is also (currently) treated by deep brain stimulation, and we could see this as a replacement.”
Stroke survivor’s future looks bright. We can never give up and keep working hard in recovery. In the near future many of the promising research projects like Dr. Yicharo Yu and Prof. Mark Lythgoe’s will be available for stroke survivors, people with brain disease and brain injury.
If you have the time to volunteer in a research study like the HANDDS-ONT Study.
For information on HANDDS-ONT http://www.ondri.ca/handds http://www.ondri.ca/handds-impacts
Toronto Stroke Networks Patient and Family Advisors (PFA)
Back in 2016, I attended a March of Dimes Peers Fostering Hope training course where many guest speakers shared their expertise about stroke care. One of these speakers, Donna, spoke about the Toronto Stroke Networks wanting to bring together a group of persons with stroke family members and caregivers to become advisors for the network. The role of the advisors would be to share their stroke recovery stories, discuss the good and bad experiences and provide advice on initiatives, and thoughts on how to improve stroke care within Toronto.
I have been an advisor for the Toronto Stroke Networks for 6 years. There are ongoing projects that I have been involved in such as reviewing education materials, providing advice to research projects, focus groups etc. I was invited to sit on the patient and Family Advisory Committee (PFAC). We meet about 3-4 times a year continuing to provide a voice for persons with stroke and their families.
I am now a co-chair with PFAC and it’s an honour to be part of it as I’m also part of the Toronto Stroke Network Steering Committee. I get to sit across from doctors with an alphabet of degrees behind their names and be treated with respect. To see up close their passion and determination to constantly look for ways to improve stroke care from the 911 call all the way through to the best recovery possible.
For PFAC to continue doing amazing work, the door is always open for people with stroke with experience from all walks of life. New stories, new ideas are important. To get involved, go to Toronto Stroke Networks web site click on For the Public a drop down will appear click on Patient and Family Advisor to find information on the roles of an advisor and a link to an application form.
Last fall I was asked if I would consider being a facilitator for a combined project with March of Dimes Canada and Heart and Stroke Canada called “Living With Stroke”. It is a project that hit a nerve. I’ve been doing peer visits on stroke units for years with March of Dimes “Peers Fostering Hope” now called “Hospital Visitation Program (HVP). But with covid restrictions we can’t get on the floor of the stroke units to see newly diagnosed patients and their families.
I did a few virtual visits, they’re not as good as in person but it’s better than nothing.
One good thing about covid was realizing with communications like Zoom we can reach out to stroke survivors and their families in smaller communities all over Canada.
So, for me the program checks all the boxes. I started training in the fall. The program is interactive over 8 weeks, with hour and a half long sessions. During the program the discussions cover all types of stroke, the importance of your stroke team, rehab, caregivers, and taking ownership for your recovery. The best part is sharing stories, experiences, and learning from each other. Most importantly to support each other.
The virtual program was launched 28th of January. It was special and emotional for me. To see and hear from stroke survivors and a care givers is something I didn’t realize how much I missed.
Doing peer support I’ve learned so much about stroke from stroke survivors, more than anyone can from books. There is always a caveat, “What worked for someone else might not work for you. Always talk to your health care professionals before making any changes.”
Over the next several weeks we will present the sessions and as we go along look for ways to improve, listening to feedback from the participants. There are many people that have worked on this project and continue to work behind the scenes to make sure the program will make a difference. The goal is making the program available nationwide.
At some point I’m looking forward to doing the program in person. I’ll keep you posted on the next session schedule.
Cholesterol can be confusing, there’s good cholesterol and bad cholesterol. Bad cholesterol as a stroke survivor is important to understand the differences. Also important for everyone is bad cholesterol is a leading cause of stroke.
In a recent Healthline Wellness Wire the first paragraph.
“Cholesterol is a waxy, fat-like substance that’s found throughout your body. It often gets a bad reputation, but you actually need a certain amount of cholesterol to make substances that are essential for good health, such as: Bile acids, which help you absorb fat – soluble vitamins. Hormones like estrogen and androgen. Cell membranes.
However, cholesterol levels that are too high can increase the risk of several chronic conditions, including stroke.”
In prevent mode you have regular blood work done that will include tests for cholesterol. As mentioned, there are two types, LDL Cholesterol bad cholesterol that contributes to plaque buildup that can clog arteries, possibly break off and cause a stroke.
HDL Cholesterol is good cholesterol it helps clear LDL bad cholesterol from your arteries and reduce stroke risks.
To lower cholesterol levels visit a dietician to set up a plan that works for you.
The Cleveland Clinic recommends foods to eat to reduce cholesterol such as eggs, shellfish, lean meat in moderation. Some good foods are oats, barley and whole grains, beans, nuts, vegetable oils, apples, grapes, strawberries and citrus fruits, soy, fatty fish (omega 3).
Work with a dietician to see what works for you. There are many cookbooks dedicated to recipes to help reduce cholesterol.
The last thing we need is another stroke.
Sheila started researching to find someone that could help her husband. She did find a therapist that over time had Sir John up and walking with the use of a walking stick. His right arm had little movement. Another speech therapist who used to work with children worked on his communication. He could fully understand, he just couldn’t speak. Later he could speak a few words. He could read the written word and with hard work was able with his left hand write a sentence or two.
Sir John enjoyed walks and his lifelong passion of reading. He retained his sense of humour a form miming so he could be part of the conversation in his own way. He was a brilliant man. Before the stroke words to paper came easily to him. He enjoyed lecturing and lively conversation about art and history. Sir John also hosted history programs for BBC. His whole life about communication either by writing or the spoken word, only to have it taken away from him in an instant.
Just before Covid I met a young man in his 40’s. His stroke left him in a wheelchair and with aphasia. Like Sir John he understood everything, he worked hard and after a couple years accomplished small walks. He was able to speak not in his old voice. He spoke slowly, having to think about the word he wanted to say. He slurred some words and has a noticeable stutter. He told me too many times he tried to join a conversation, people thought he was drunk and turned their back on him. If he asked a stranger or a shop keeper a question, he usually got a look of disgust and terse answer. So, he has decided to keep his conversations to loved ones.
An interview with Robin Jones in the “Speaking Up the newsletter of Speakability said, it must be very frustrating for those caring for patients like me to watch them try to make sentences that are meaningless. But talking in a natural way to help them fit words together again. It is the best thing you can do even if it doesn’t seem much good at the time. It reassures the patient that they are not insane and gives them a sense of normality…
The worst thing for me was when people treated me in a different manner and kept repeating things as though I was an idiot.”
This is also important. “On a recent training day for the Department of Health (England), the officials were surprised to find the aphasics judging them on the quality of their conversation: highest marks for speaking slowly and clearly, exercising patience, not finishing patient’s sentences, recognizing that slow garbled speech does not mean loss of intelligence and patronizing baby talk is insulting and counterproductive.”
Sir John Hale lived another 7 years after his stroke. His wife never stopped looking for that one doctor, therapist or researcher that might be able to help her husband. In her 2009 postscript to the book, she writes of improved stroke care in Britain with more stroke units with properly trained staff, but she adds far more is needed to be done.
I look for stories whether in books, news articles, research reports or verbally. The stories of a stroke survivor being told “there’s nothing we can do”, in spite of those words they do improve to give us all some hope.
I just finished reading “The Man Who Lost His Language: A Case of Aphasia” written by his wife Sheila Hale a distinguished writer and journalist. Her husband Sir John Rigby Hale was best known as a history professor and author specializing in the Italian, British and European Renaissance. A writer of many books on the subject. He taught and lectured all over the world. He sat as a chairman or trustee for numerous art galleries and museums. Sir John was a WW2 veteran, he served in the Merchant Marine. During college he acted in Shakespeare’s plays.
On 30, July 1992 Sir John had a stroke. After some initial confusion with the local clinic the ambulance arrived 45 minutes later. At that time British health didn’t prioritize people over 65.
Sheila Hale writes of the lack of concern for her husband. His initial doctor said there wasn’t anything that could be done for him, he went on to say Sir John would never walk or speak again. It was 10 days before he was transferred to another facility for a CT Scan. Sir John couldn’t speak, he had a mobility issue on his right-side arm and leg.
One quote from the book has to get you thinking. “One young nurse told me that whereas stroke used to be “the dead end of nursing”, the opportunity to give quality care to people who might otherwise have died or been permanently disabled was so rewarding she decided to devote her career to caring for stroke Patients.”
Another thing to think about was when Sir John finally was assigned a bed in a ward a nurse said it was the stroke bed, in the far corner of the ward.
The story of Sir John’s stroke had some similarities to my dad’s stroke in that they removed my dad’s blockage and sent him home not much follow up or any kind of therapy.
The early 90’s wasn’t a very good time to have a stroke in Canada or Britain. As Sheila Hale wrote, “Doctors were of the mind that there wasn’t much they could do for stroke patients. Much of this was also the unknown and what they thought they knew that stroke damage was irreversible.” It was also pointed out that doctors preferred to specialize in fields where there was a reliable chance for success with better recoveries.
here to edit.
Strokes happen in an instant, no warning. As Howard Engel so profoundly writes in his book, “The Man Who Forgot How to Read” “Like the medieval figure of death, strokes were no respectors of physique or education. We were all levelled by the sweep of its swinging blade.”
On July 31, 2001 Howard Engel got up had his breakfast he went out to the porch to pick up his paper. He glanced at the headline and it looked as if it were written in a strange language. His first thought was one of his friends was playing a joke on him. He flipped through the sections all the same. Howard began to think something terrible was happening to him. His first thought was it stroke.
Later that morning at the hospital it was confirmed he had a stroke called an Alexia Sine Agraphia. Described by one of my favourite doctors Oliver Sacks, “Alexia, an inability to read resulting from damage to a particular area of the occipital cortex, the visual part of the brain.”
For Howard Engel this was devastating, he was an award-winning author. He had a long career as a writer for CBC Radio and he wrote many books. He wrote a series about a private detective named Benny Cooperman. Not your Sam Spade type with the chiseled chin and tough as they come. Benny was the opposite but somehow managed to solve the cases. The books were set around the Niagara Region of Ontario.
Like me Howard loved to read the printed word. The old adage “the more you read the better the writer you will be.” I can’t imagine what he went through waking up to discover he couldn’t read. The words were jumbled, letters were missing.
He also had trouble remembering names, he wrote, “I have a brain full of remembered names, but the road out is blocked by rubble.”
Howard never lost his sense of humour or his ability to write. He was able to process thoughts and put pen to paper. But he still couldn’t read what he wrote. If he did write something and the editors sent it back to him for a re-write he was stumped. He spent months trying to find ways to trick his damaged brain Eventually with the help of a therapist he succeeded. It was a slow process, but it worked he could read.
Howard Engel went on to write a few more books including “The Man Who Forgot How to Read” I read it in one sitting, I look forward to reading his other works. This is a story about never giving up something you love, or giving up your passion. I’ll leave the last words to Howard Engel.
“And so, it goes. There are good days and bad. At times I find the way hard and confusing, but I get my reward the following day when the way is easier to find. Hard work pays off.”