- sign in sheet
- subscribe to our mailing list
- Upstate Medical study
- future meetings
- refreshment volunteers for September, October, November
- Holiday party – date? time? location?
- Meetings in January, February?
- Where are my glasses?
- Find missing items
- Remember to take your medications
- How to use our website
- Be careful about what you read and buy on-line
- Here is a list of organizations that can be trusted for good information
- About Amazon Smile
- A personal health journal should keep track of your overall health.
- on-line support groups
- Products that makes getting dressed easier
- The Aware in Care kit
- Can’t get out to exercise?
- Facebook group for us
Where are my glasses?
Find missing items
You could have sworn you left your keys right there! When you misplace a crucial item that’s part of your daily life—like a set of keys—it’s often when you’re in a hurry. Combined with your iPhone, Tile can help you find your misplaced items, and potentially save a perfectly good day from turning sour. It’s one of the better lost-and-found device we’ve tested so far, but it does have some some drawbacks. You’ll need to replace your Tile every year due to its non-removable battery,
Remember to take your medications
Many health conditions require patients take medications on daily basis. Missing a dose or taking more pills than prescribed could have detrimental effect on patient’s health, often putting them at risk.
Staying on top of your medications and taking them exactly as prescribed is crucial for their efficiency. But keeping the track of medications you need to take could be bothersome, especially if there’s more than one drug involved.
This is the reason why many people use different reminders that help them remember not only when to take it, but also when they need refill, or to track their drug use. Mobile apps for both Android and iPhone made this tracking a lot easier.
Round Health for iPhone
How to use our website
Home Page, Top menu, right sidebar, post categories, search, footer links
Be careful about what you read and buy on-line
Some products and ideas seem like they may make daily living easier, but be careful what you believe. Anyone (including me) can make a website that looks official.
How to recognize a scam
- Money is Involved
- If It Sounds Too Good to Be True…
- Urgent! ACT NOW! Don’t Wait!
- The Power of Fear
- We Need Some of Your Personal Information
Here is a list of organizations that can be trusted for good information
- National Parkinson’s Foundation helps patients actively enjoy life through expert care and treatment research.
- American Parkinson’s Disease Association provides support, education, and research to help you live a fuller life.
- Michael J. Fox Foundation is helping to raise money for much-needed research to help find a cure. From ways you can get involved to a great blog chock-full of Parkinson’s-related information, there is so much information here
- Parkinson’s Disease Foundation provides information including news about the disease, information about upcoming events, insight into the latest research, and education about what to expect.
- The Davis Phinney Foundation is committed to supporting programs as well as research that help to deliver inspiration, information and provide tools that will enable people living with Parkinson’s to have more control in managing their disease.
- EVERY VICTORY COUNTS® Davis Phinney Foundation Essential Information and Inspiration for a Lifetime of Wellness with Parkinson’s Disease. A must read. http://cdparkinsons.org/wp-content/uploads/2016/08/DPF-EVC_2014-2.pdf
- The Parkinson Alliance is the umbrella organization for the Parkinson’s Unity Walk that takes place every spring in New York City. They also sponsor Team Parkinson, a fundraising racing event. You can find current news and information on research projects on their site.
- Partners in Parkinson’s has a program where you can be connected to an advocate who will listen, offer advice and support to patients and caregivers at no cost. This is just one of the services you can find through Partners in Parkinson’s.
- Caring.com has a support group for caregivers, family and friends of those with Parkinson’s disease. No subject is off-limits in this forum.
- The National Parkinson Foundation has a site specifically geared to caregivers. They help carers navigate the emotional, financial, and physical challenges they may face caring for someone with Parkinson’s
- Parkinson’s Action Network, Advocacy group,
- National Institutes of Health – Clinical Trials, www.clinicaltrials.gov
- Medline plus Health Information (Clinical trials, nutrition, research, and treatment)
- Coalition for the Advancement of Medical Research, www.camradvocacy.org
- Washington State University Aging Services Technologies aims to understand technology use in older adulthood and provide information about assistive technologies, http://www.tech4aging.wsu.edu/home.aspx
- Family Carepartner Alliance, www.carepartner.com
- National Alliance for Care Giving, www.caregiving.org
- Resource for Carepartners, www.caregiving.com
- National Family Caregivers Alliance, www.nfcacares.org
- Well Spouse Association http://www.wellspouse.org/
- Video caregiving http://www.videocaregiving.org/
Medical & Rehabiliation Care, Assistive Technology
- Physical medicine and Rehabilitation
- Occupational Therapy. The American Occupational Therapy Association, http://www.aota.org/en/AboutAOTA.aspx
- Physical Therapy. American Physical Therapy Association,
- Speech Therapy
- AARP offers guidance and resources for living well in your community, www.AARP.org
- Aging in Place – http://ageinplace.com/
AmazonSmile is a website operated by Amazon with the same products, prices, and shopping features as Amazon.com. The difference is that when you shop on AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the purchase price of eligible products to the charitable organization of your choice.
Every item available for purchase on www.amazon.com is also available on AmazonSmile (smile.amazon.com) at the same price. You will see eligible products marked “Eligible for AmazonSmile donation” on their product detail pages.
For more information about the AmazonSmile program, go to http://smile.amazon.com/about.
A personal health journal should keep track of your overall health.
Some of the things you should include are:
- Illness or injury
- “>Medicines, vitamins or supplements that you are taking and how often you take them
- Diseases or illness in your immediate family
- Emergency contacts
- Doctor names, addresses, phone
- Insurance information
- Medical professional visit log
When you fill in your health history, be sure to include the dates. For example, if you were hospitalized, write down the date that you were admitted and the date you were discharged. You can also include notes on how you were feeling.
Google Keep – https://keep.google.com
Google Docs – https://docs.google.com
A blank journal on paper or https://www.amazon.com/Patients-Medical-Journal-Personal-Treatment/dp/1634502299
on-line support groups
My Pakinson’s Team https://www.myparkinsonsteam.com/
Patients like me https://www.patientslikeme.com/
Can’t get out to exercise?
Try following a dance class from home
or try an on-line exercise video
Products that makes getting dressed easier
The Wright Stuff offers a range of products that makes getting dressed easier for anyone who has lost the use of one of their hands. The company has Dressing Sticks, one-handed belt, sock aids, they even one-handed nail clippers for people.
The Aware in Care kit
The Aware in Care kit can be requested at www.awareincare.org or by calling 1-800-4PD-INFO (473-4636).The kit includes:
Hospital Action Plan
Read about how to prepare for your next hospital visit—whether it is planned or an emergency.
Parkinson’s Disease ID Bracelet
Wear your bracelet at all times in case you are in an emergency situation and cannot communicate.
Medical Alert Card
Fill in your card with emergency contact information and place in your wallet.
Complete this form and keep copies in your kit for use at the hospital.
Parkinson’s Disease Fact Sheet
Share the facts about Parkinson’s with hospital staff and ask that a copy be placed in your chart.
I Have Parkinson’s Reminder Slips
Share vital information about Parkinson’s disease with every member of your care team in the hospital.
Use this magnet to display a copy of your Medication Form in your hospital.