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CARENOTES | Past Carenotes | Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.
  

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 suggestions.

Melinda





Shared by: MT
4/23/14

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 experience, too)

  • meditation, in 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 enjoyable time.

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 staff.

Keep up 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
Illinois
4/22/14

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
4/22/14

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 organic......just healthy.

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!








 

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