CARENOTES | Past Carenotes
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This Week's Carenote - 4/22/14
My husband was recently diagnosed with
MS. I have always taken care of my sister
who is a brittle diabetic. Now I am
researching all sites with MS caregiver
info. Anyone that has info on the beginning
of this please feel free to post
Shared by: MT
Several excellent points
made already. My husband has a progressive
type of MS, diagnosed in the mid-1980s also
after years of trying to figure out what was
happening to him. (This was also sometime
before the current drug treatments became
available, and research is continuing to
find treatments for various types of MS.)
Whole-heartedly seconding Myrna Beth's and
Susan's great advice about lifestyle and
seeking out medical and community resources.
My husband and I would
like to add (and we realize these may well
already be part of your own caregiving
whatever form works well for you;
the practice of
finding humour and joy together through
the ups and downs;
and a supportive
community of friends and family
All have been
indispensable in living well with MS, both
for the loved one living with the disease,
and for the caregiver.
Feed your spirits:
find ways to meditate, to refocus and "still
your heart" as one friend's favourite prayer
begins. Yoga, for example, has been helpful
to my husband for many years, and he got me
into it, too. I also sing in a choir and
take part in our faith community. Just going
for a quiet walk is another wonderful way to
restore internal equilibrium.
Find something to
laugh about every day, even if you may
sometimes have to hunt for it. Endorphins
work wonders for the system.
Make a point of
regularly doing things you enjoy together,
and also independently. If activities need
to be modified, find whatever ways you need
to make them fit.
Keep a running list of accessible places and
activities you know about and like, that you
can enjoy easily on the spur of the moment
or with a little preparation, and at your
own pace - a patio, a museum or gallery, an
outdoor music festival, a football game, a
particular resort for a weekend away. Call
venues and ask them in detail about any
accessible features that will make it easier
for you and your husband to have an
We've often enjoyed
adaptive sports, like sailing (go in the
late afternoon to avoid the heat) and scuba,
with local clubs where there is appropriate
adaptive equipment and trained support
communication: talk to each other about
how you are feeling about the MS, and the
other important things in your lives. Also,
if an issue is causing distress, don't feel
you and/or your loved one have to simply
endure it alone. Ask your health care team
about available supports or treatments
appropriate to the issue. If you don't feel
the need has been met yet, keep on asking.
Keep in touch with
your positive personal support network:
folks who are familiar with the situation.
We continue to exchange fresh ideas with
others in our network, several of whom are
also caregivers. For friends or family who
seem unsure or uncomfortable but want to
help out, keep a list of specific activities
or errands that others can help you and your
husband with, and ask them if they'd like to
choose something. Often people are really
happy to be empowered to pitch in, once they
see specific ways they can help.
Hope some of these
thoughts are helpful. You and your husband
and family are in our prayers. All the best
in your ongoing journey!
Shared by: Myrna Beth
Contact the MS Society the MS foundation and
any other resources available. Finde their numbers online then I
would suggest calling them personally. They will talk with you and
send you many pamphlets that will help explain MS. Their are different
types of MS. Their is also an MS magazine that you can have delivered
to your home. This magazine keeps you updated on newest medications
and gives tips on making life easier. It's hard to tell someone what
to expect because many patients have mild symptoms while others may
experience more debilitating symptoms. Best of Luck!
Shared by: Susan
High Point, NC
I have been diagnosed since Dec 1995...but
as with ALL MS people, had it for many years before diagnosis......#!
Seek GOOD medical advise from a trusted MS neurologist.
Get on medication now....I am on Betaseron which has been
around for a LONG time - and NO, the shots do not hurt if
you let the designated area DRY before injection. TINY
needle and just below the skin. There are many options
available....listen to your neurologist!
KEEP ACTIVE! MOVE
MOVE MOVE not necessarily run a mile, but do some mild exercise
to keep the muscles toned.
Eat healthy - not vegetarian or
REST when you are tired.
Do NOT get HOT (if possible)......there are cooling vests &
collars available - see MSSA.
Also contact local MS Society,
(national) MS Foundation and MSSA. ALL will give you really
great advise! You are in my prayers!