Finding out a friend, family member or co-worker has Parkinson’s disease is devastating, and despite our best intentions, we often say things that are offensive or hurtful. What the patient really wants to hear is that you’re there for them and thinking of them.
With that in mind, we’ve compiled a list of things you should say to a person who has been living with Parkinson’s disease:
1. “I’ll do that for you!”
The “that” could be anything that you know the patient would find helpful, from fetching groceries to giving them a ride to the hospital to cooking them dinner. Actions speak louder than words and even just one act of kindness can help them out immensely, especially if they’re feeling ill following a treatment session.
2. “What are you thinking about today?”
It can be difficult to judge what’s going through the mind of someone who’s living with Parkinson’s. They’ll have good days and bad days, so some days you can be their cheerleader, and on other days, a shoulder to cry on. Asking them what they’re thinking about opens the lines of communication, and could spark a conversation about upcoming treatment, how tired they are or maybe nothing to do with their illness, if they want to get their mind off the subject.
3. “What don’t you want to talk about?”
Your friend or loved one may be completely open about all aspects of their illness, or there could be some areas that they really don’t want to talk about. Respect this by asking what’s off limits. This way you’ll know that you’re not overstepping.
4. “Thinking about you!”
This can either be said verbally or via a text message, email or Facebook message. It’s short and simple and lets the person know that you’re thinking about them and are in their corner without probing them for information.
5. “So this happened to me.”
It’s OK to talk about yourself and share good news about your life with your friend or loved one, so if you got that promotion, your kid did well at school or you just bought a new car — tell them. You can also share the bad things as well, because they still care about your life.
6. Nothing at all
Sometimes words are not needed, particularly if you don’t know what to say. It’s better to give a hug, squeeze someone’s hand or simply listen
Support Parkinson’s Research Funding. In the coming days and weeks Congress will be determining funding levels for various agencies involved with #Parkinsons research. Please take action to push for at least $36 billion for the National Institutes of Health, and $5 million for the Centers for Disease control so it can begin work implementing the National Neurological Conditions Surveillance System.
Exercise can help you manage your Parkinson’s symptoms.Read our exercise guidelines to start your journey to better living.
Read more https://briangrant.org/exercise/
A promising therapy that may slow or stop Parkinson’s progression is moving forward. The Michael J. Fox Foundation (MJFF) announced plans to collaborate to assess the clinical use and development of cancer drug nilotinib. Among the partners’ goals: planning a double-blind, placebo-controlled clinical trial of nilotinib.
What has the research told us about nilotinib?
Two studies in pre-clinical PD models from 2013 and 2014 showed protective effects of nilotinib. And several other studies in pre-clinical PD models have shown protective effects of inhibiting c-Abl. This provided impetus for testing nilotinib in patients.
The trial results from a small, open-label (all knew they were getting the drug) trial of nilotinib in people with advanced Parkinson’s — included impact on spinal fluid measures of alpha-synuclein and imaging scans of dopamine function.
The drug was well tolerated, and participants reported improvements in motor skills and cognitive function. These are encouraging results; unfortunately, researchers know that the likelihood of placebo effect is high in any open-label Parkinson’s clinical study. Nonetheless, MJFF deems these findings supportive of continued, rigorous research in this area.
Should patients start taking nilotinib?
In short, no. We just don’t know enough yet.
To find out more about eligibility for the study, contact :
Albany Medical College
Albany, New York, United States, 12208
Contact: Darryl Collins 518-262-6651 firstname.lastname@example.org
Contact: Sharon Evans 518-262-6682 email@example.com
Principal Investigator: Eric Molho, MD
Read more about the drug :
Print and bring this with you if you are going to the hospital.
Share the facts about Parkinson’s with hospital staff and ask that a copy be placed in your chart.
This educational video from Parkinson’s UK explains more about Parkinson’s disease. The film shares that the disease develops in the substantia nigra part of the brain when the cells begin to die. These cells produce dopamine and the loss of dopamine in the brain leads to issues with movement.
As the disease progresses and the brain has less and less dopamine, the symptoms of the disease become more apparent and the patient develops tremors, difficulty walking, and other issues with movement. Researchers are working on ways to stop or slow down the loss of these dopamine-producing cells so that Parkinson’s disease may be treated and ultimately cured.
first published in https://parkinsonsnewstoday.com/2017/10/16/how-dopamine-affect-parkinsons/
1. Educate Yourself
The more you know about Parkinson’s disease, the more you can be prepared for what it has to throw at you.
2. Healthy Lifestyle
Try to stay as active as possible — walking, swimming and practicing yoga are great low-intensity exercises that you can take at your own pace.
3. Hobbies and Socializing
If you have hobbies then try to continue with them, or find new pastimes that will help take your mind off Parkinson’s disease and give you something else to focus on.
4. Complementary Therapies
Meditation, acupuncture, use of essential oils and reflexology are among the many therapies you may find useful.
5. Mobility Aids
Everyone is different, and people will find different aids more beneficial than others.
6. Keeping Your Independence
If you can dress and bathe yourself, prepare simple meals and do household tasks then continue to do so, even if it takes you twice as long.
7. Join a Support Group
See if there is a local support group in your area for people with Parkinson’s disease. If there isn’t, find an online group. You’ll be able to share your experiences with people who really understand what you’re going through and get tips and information that will help you in your everyday life.
Researchers working in the lab of Carnegie Mellon University neuroscientist Aryn Gittis, have identified two groups of neurons that can be turned on and off to alleviate the movement-related symptoms of Parkinson’s disease. The activation of these cells in the basal ganglia relieves symptoms for much longer than current therapies, like deep brain stimulation and pharmaceuticals.