Daily Living with PND
Life is complicated enough. Add in cancer and dealing with the disabilities of a
paraneoplastic neurological disorder and it can seem overwhelming at times. On this page,
we offer advice and suggestions for how to make daily life a little easier.
Get Support
No one should have to face a Paraneoplastic Neurological Disorder alone. Connecting with
others who are experiencing the same things you are helps. Join the PND discussion in the
NORD/Eurodis Rare Diseases PND Community at www.rarediseasecommunities.org/ Don’t
be shy: introduce yourself and join the conversation!
Depression is very common for PND patients; it may even be a physiological effect of many
Paraneoplastic Neurological Disorders. Don't struggle with depression alone. Discuss your
feelings with your family and friends, and ask your doctor for help. If there are limited
support resources in your local area, The Befrienders, www.befrienders.org, is an
organization that offers support in over 40 countries.
Get the Right Tools
Learning to live with altered capabilities can be frustrating. But, there's no need to reinvent
the wheel every time. An occupational therapist can help you figure out how to stay as
independent as possible using tools and equipment adapted to various disabilities. Some
great online sources for everything from eating utensils and dressing aids to wheelchairs
and walkers can also be found at these sites (many more can be found by doing a Google
search):
Enable Mart, www.enablemart.com, is a good source of equipment to make computers
more accessible to paraneoplastic patients. They offer items like alternative keyboards for
folks with limited hand control.
Info Grip, www.infogrip.com, is another source for accessible computer equipment
Wheel Chair Net, www.wheelchairnet.org, is a good place to start if you need to use a
wheelchair
Disabled World, www.disabled-world.com/ is an online site with many links to retailers
providing adaptive products around the world.
The United States Society for Augmented and Alternative Communication,
www.ussaac.org, offers information and resources on communication devices that can assist
PND patients who have speech difficulties.
The Communication Independence for the Neurologically Impaired (CINI),
http://www.cini.org/ , is another excellent resource for PND patients who have speech
challenges.
Stay Active & Fit
Staying as active and fit as possible is important both to your physical health and your
mental health. Anecdotal evidence from long-term paraneoplastic patients indicates that
regular exercise and activity leads to greater independence and control over neurological
deterioration. Although working with a physical therapist is ideal, if that is not possible, it is
still important to do as much as you safely can.
The National Center on Physical Activity and Disability website, www.ncpad.org, offers many
excellent ideas on how to stay physically active with a disability, including free videos.
Stay Informed
New Mobility Magazine, newmobility.com, is a magazine dedicated to discussing issues
related to movement disorders.
The National Organization on Disability, www.nod.org is a non-profit organization focused
on all aspects of living with a disability.
The National Rehabilitation Association, www.nationalrehab.org, offers information and
resources related to rehabilitation issues.