A list like this is meant to provide initial “patient perspective” direction for the “new kids on the block” or an opportunity for more experienced PWP’s and care partners to compare and consider their priorities. Not that my list is the “last word”, but it is based on a lot of research, support group meetings, a visit to the
National Institute of Health’sNational Institute of Neurological Disease & Stroke , participation in workshops at the
SE Parkinson’s Conference , and joint presentations with movement disorder specialists to support groups sponsored by the
ParkinsonAssociation of the Rockies , as well as my personal experience. Talk to your
movement disorder specialist (MDS) to establish a plan and priorities that are appropriate for your needs.
1. Be
sure your doctor is a movement disorder specialist/neurologist (MDS). Even if your doctor is a neurologist, this
does not mean that he/she has the experience or education with movement
disorders that will enable them to provide the specific care you need. Visit http://www.essentialtremor.org/siteresources/apps/physicians/
for a list of MDS’s in your state. If
your insurance company prevents you from seeing an MDS, let them know that this
is a serious problem for you and seek a referral. If you cannot obtain one, let your local support group leader
know so they can report it to the regional PD organization for follow up. If you have this type of insurance company
problem or if there are no MDS locations in your area, locate a neurologist who
has demonstrable experience working with PD.
2. Exercise. There are many things related to PD that are
beyond your control. Getting regular exercise
is something you can control that can make a big difference in your symptoms
and your quality of life. Establish a
plan with your MDS that is appropriate based on your age and condition. Visit http://davisphinneyfoundation.org/living-pd/
for helpful suggestions regarding exercise and living well.
3. Participate
in clinical research trials. When
you do this you accomplish two things.
First, you help with the advancement of knowledge that will lead to a
cure. Second, you learn things that may
help you. Information on specific
studies including availability, location, and timing of research trials visit www.pdtrials.org/ or https://foxtrialfinder.michaeljfox.org/.
4. Learn
everything you can about PD. This
applies to both PWP’s and care partners.
By doing this, you will have a better idea of what to expect in terms of
symptoms and progression. Also, it will
enable both of you to advocate for yourselves, ask informed questions, and
become active/proactive in the management of your health. For a list on online information resources,
visit http://shakypawsgrampa.blogspot.com/2011/12/resource-list-donation-appeal.html. Also try googling any combination of
Parkinson’s and _________ (fill in the blank with any topic of interest such as
fatigue, non-motor symptoms, or cognition).
Choose relatively current articles by recognizable organizations for the
most reliable information.
5. Prepare
for your MDS appointments. Remember
that these are very busy individuals who want to provide you with the best care
possible. Help make the limited time
you have together in appointments productive by preparing a list that includes:
·
Your current list of prescriptions including
dose size and times/day you take that dose.
·
Your current list of supplements including dose
size and times/day you take that dose.
·
List of current symptoms in order of how
troublesome they are to you. Use bold
type to identify the most troublesome symptoms.
·
A list of observations/information regarding
your condition or any changes that you want your MDS to know about. Record on/off fluctuations, episodes of dyskinesia, and
whether they occur at the peak or end of the medication cycle.
·
A list of questions regarding your condition,
symptoms, treatment, medications, alternative therapies, or new developments
you have heard about that may apply to you.
It is extremely important that you and your care partner give this
careful thought in advance. By
organizing for your appointment this way, there should be adequate time to have
all you questions answered.
If your care partner is
unavailable to attend the appointment, then choose a friend or relative to
accompany you. It’s important to have
two sets of eyes and ears and someone to take notes.
6. If
you are not comfortable with your MDS for any reason, talk to him/her about it. If you don’t understand your treatment plan,
can’t get answers to your questions, can’t obtain needed referrals, are unable
to communicate with him/her between appointments in a reasonable manner, or
anything else, talk about it. Be a
polite squeaky wheel. If you are unable
to resolve problems that are important to you, find another MDS! Your #1 obligation is to yourself and your
care partner.
7. Attempt
to “live in the moment” as much as possible.
Learn from the past and move on.
Plan for the future, but do not dwell on the uncertainty that it surely
contains. I know that this is easier
said than done. In my case, I rely on
my faith for reassurance and guidance.
8. Set
meaningful goals and work to accomplish them.
If this has always been your approach, continue it. If it has not, resolve to start. There is no shortage of opportunities, as we
all know. Choose from things like
reaching out to help others, treating your care partner with patience and
respect, maintaining wellness, getting exercise (physical and mental), writing
a memoir, attending seminars, participating in clinical research studies,
participating in PD fundraisers, attending support group meetings, attending
church or otherwise engaging your faith, and many more. Make your goals as specific as possible and
make sure you are prepared and able to do what is required to accomplish
them. Hold yourself accountable and ask
your care partner to do the same.
9. Stay
in touch with your passions. Some
of the non-motor problems associated with PD can include depression, anxiety,
and apathy. You may be able to reduce
these kinds of issues by engaging in activities that have been important to you
in the past. If they involve physical
or mental challenges you are no longer up to, try modified versions or seek new
activities related to your passion (such as listening to music or attending
concerts if you are no longer able to sing or play an instrument). Resolve to stay engaged with family and
friends. It is OK to give yourself permission
to have a “down day” once in a while, but don’t stay there.
10 Continue to seek and live your “personal truth”
without trying to force it on others. I picked up this terminology in a book titled
Wisdom of the Ages by Wayne Dyer and have found it to be helpful. What do you believe in and what matters most
to you? Do your actions reflect your
beliefs and priorities? Talk about these
things with your care partner and discuss any changes you might want to make as
part of a plan for the future.
