Caregiving: How Do You Ask For Help?

Posted on August 21, 2013 by MSAA

When you are on a plane the flight attendant always guides you through the steps of what to do in an emergency. One of those steps involves the oxygen mask. They always say to secure the mask to your own face before assisting your child or others. The logic is that if the plane loses oxygen and you faint or become incapacitated you will not be able to help anyone else (let alone yourself).

Many times a caregiver or carepartner is so focused on all the things they need, want, or have to do for another that they prioritize the “to do’s” and completely forget about their own needs. It is important to remember that everyone needs help at some point or other, even the designated “helper.”

But how do I ask for help?

Know what you need – Identify a few key things and add them to your “to do” list
Prioritize your list – You shouldn’t always be last
Know who to ask –Learn which agencies do what
Have the conversation – Discuss your needs/actions with the person you’re caring for

Caring for You When You’re Caring for Someone with Multiple Sclerosis

Posted on August 19, 2013 by Angel Blair

Being a caregiver doesn’t always mean having time to take care of yourself, but at times it is exactly what’s needed in order to maintain your own wellbeing. Yes, it may not always fit into your schedule while taking care of others, but it requires some consideration so that you may carry out these other responsibilities. As a caregiver, self-care means having to make time during the busy day to do something for yourself. For some this is difficult to achieve or even fathom, because the person being cared for is your top priority. But, if possible, you may be able to make minor changes or tweaks to a routine that creates the time and space for this much needed self-care. Though caregiving can be unpredictable due to the changing nature of illness, it is important to take advantage of times where you can be taken care of too. Here are some suggestions to find these moments of self-care:

Take rests when they rest.
Eat regularly! Eating meals together can have an added quality time component too.
Venture outside of the home when you can. Running errands, going shopping, or even just taking a brief walk can provide some alone time needed to rejuvenate yourself (To search for respite resources in your area, see the ARCH National Respite Network and Resource Center, http://archrespite.org/home).
Talk! Caregiving can be an overwhelming and emotional journey, so if you have the opportunity to talk or vent about your experiences, do so. If you would like an objective third party to listen who’s not a family member or friend, it may be helpful talking to a counselor/therapist about your experiences in order to safely and effectively express your feelings in this role.

Caregiving is no easy task. It takes a lot of hard work, determination and commitment. So while you’re busy taking care of others, be sure to remember you, and that sometimes you need care too!

Resources for the Caregiver

Posted on August 14, 2013 by Samantha Schech

The role of the caregiver is often described as “the rock” or “the foundation” of the family; the one responsible for the wellbeing of all. But who takes care of you? Just as much as your loved one needs your support, you need support also. It is ok to take a break, and turn to help when you need it. In order to be the best caregiver you can be you need to be well rested both mentally and physically. Being the primary caregiver for an individual with MS can be challenging. The unpredictability of MS itself creates an additional challenge in trying to manage your day to day life.

There are some helpful resources for those in the caregiver role to aid in the management of the daily challenges of caregiving. The Family Caregiver Alliance provides caregiving information and advice as well as a guide to state resources available to caregivers. The Caregiver Action Network offers information and resources to individuals in all types of caregiving situations. The site helps to identify the various needs that caregivers may express through their varying roles.

Another great resource directed specifically towards spousal caregivers is the Wellspouse Association. They coordinate a national network of Support Groups and facilitate a Mentor program. And when the time comes for a break, the National Respite Network provides a National Respite Locator to help caregivers locate respite services in their community. The site also helps to educate caregivers on how to find and choose appropriate respite care.

With so many resources available to assist the individual in the caregiving role, now it is your time to take a break and be the best caregiver that you can be.

Running on Empty

Posted on July 26, 2013 by MSAA

Have you ever been in a car which has run out of gas? If you haven’t, the car slows… you may coast a bit, but quickly movement putters out. For many people with MS, fatigue can be much the same, one minute you are moving around and then suddenly the momentum changes and your energy level drops. For some people, they may even feel that to take one more step or motion is too much and may need to immediately sit or rest.

In a car there is a gauge which shows you when the gas tank may be getting low, people are not so easy to read. Some people may even feel as though the internal gauge is broken.

So, what can you do to try and prevent your engine from stopping?

Some quick energy conservation tips:

Listen to your body
Plan for your day (try not to plan too much)
If you can, try to schedule rest breaks into your day or activity
Talk to your doctor about your experience

For more in depth information on MS Fatigue see the following link: https://mymsaa.org/about-ms/symptoms/fatigue/.

What is a Pseudoexacerbation?

Posted on July 24, 2013 by Angel Blair

For many individuals with MS, the summer can be a difficult time. The heat and humidity may cause MS symptoms to flare and become agitated because of heat affecting one’s body temperature. For some who experience a worsening of symptoms in warm environments, this may actually be an example of a pseudoexacerbation. A pseudoexacerbation is a temporary worsening of MS symptoms, without the presence of actual myelin damage or inflammation. Other than heat, individuals may experience this as a result of other illnesses or infection. It is important to take note and be aware of what symptoms you are experiencing, how long they occur, and your environment surroundings. If you find yourself heat-sensitive, try to avoid warmer settings. Stay in air conditioned places, do outdoor activities either early in the day or after sunset when the temperature is cooler, and wear lighter weight clothing when needed. If you have concerns about or are experiencing new symptoms it is important to be aware of your activity and surroundings, especially during these warm summer months!

For more information on pseudoexacerbation, see the MSAA brochure, Understanding and Treating MS Relapses, https://mymsaa.org/publications/understanding-treating-relapses.

A Women’s Retreat

Posted on July 22, 2013 by Becky Remington

For the past 6 years, as a Regional Director for MSAA, I have done many patient and professional healthcare provider education programs, on many diverse topics related to MS. But my favorite programs are those aimed specifically for women with MS. We recently had a Women’s Retreat in Sheridan Wyoming, and 30 women with MS shared a very special weekend of fun, relaxation, education and friendship.

MS specialists like Amy McKay, a nutrition and exercise guru from Texas, shared dozens of tips to help maintain a high quality of life by trying to incorporate movement, healthy eating, balance in life, and finding- and sharing – happiness. The weekend included group discussions, new friends, and a chance to discover hidden talents and create a beautiful summer wreath. Add in the chick flick movie on Saturday night and you couldn’t find a happier group of women!

Of course we also learned about the newest MS therapies, and how to use the MSAA SEARCH program to determine, with your neurologist, the best course of treatment for each individual.

It is always hard on Sunday afternoon to say goodbye to all the new friends I have made at the retreats, and I see that sentiment echoed throughout the room. Many friendships, support groups and walking buddies are started during those three days!

When we have a women’s retreat in your neck of the woods, I hope you will consider signing up. We would love to have you!

Tips for Staying Cool and Conserving Energy

Posted on July 10, 2013 by Samantha Schech

As the temperature continues to rise during these summer months there are several ways to help beat the heat and conserve your home energy. Start by trying some of these tips to lower your energy bill and keep your home cool!

Keep doors closed to uncooled parts of your home. If you have central air conditioning, close off the vents to any rooms that you will not be using.
- Tip: The lowest level of a home is often the coolest. If you have a basement, plan to spend most of the day in this room, to avoid over cooling the rest of your home.
Using ceiling and other fans, even if you have air conditioning, helps to provide additional cooling and better circulation of the cooled air.
- Tip: Place a bowl or tray of ice water in front of a fan to increase the chill factor!
Seal any holes or cracks around doors and windows, this helps to eliminate cold air leaks. Make sure to seal around window air conditioners with insulation.
Close the blinds and shades in windows facing the sun to keep out the sun’s heat and help fans and air conditioners cool more efficiently.
- Tip: Check out energy efficient curtains or blackout curtains to help keep the light and heat out of a room!
Clothes dryers and dishwashers produce a lot of heat. Use them in the early morning or late evening, not during the hottest part of the day.
- Tip: Wash clothes in cold water and air dry in front of a fan. This tip works the same as the bowl of ice water!
Turn off TVs, computers, and other electronic devices rather than use standby mode. Electronic devices can create additional heat in the home.
Unplug items like cell phone chargers, DVD players, microwave ovens and other appliances. They still use energy even when turned off!
- Tip: Plug electronics into power strips and turn off the power switch when the items are not in use.

The Low Income Home Energy Assistance Program (LIHEAP) helps keep families safe and healthy by assisting families with energy costs. Check in with LIHEAP about energy conservation and low income energy assistance programs. Often in the summer months, those with lower incomes, or individuals with disabilities are offered discounts on their energy bills to help keep their homes cool during the summer months. For information on applying for LIHEAP assistance, please contact your LIHEAP State or Territory agency.

Preparing for a Doctor’s Visit

Posted on June 24, 2013 by Ashley

Okay, so we all go to doctor’s appointments… and we have to get there early, in order to fill out paper work… and while we’re filling our paper work in the doctor’s office waiting room, we have to try and ‘remember’ everything that we need to write down for the doctor.

So I’m going to share some things that I do, in order to prepare for a doctor’s visit… without forgetting information that needs to be shared.

For starters, I keep a journal. In my journal I keep note of any changes in how I’m feeling or how I’m reacting to medication. It’s also very handy, when I need to write down a question I want to ask my neurologist, and if I don’t write it down right then… I’m going to forget, even if I tell myself that I won’t.

Something I always have on me when I leave the house, (as well as at home saved on my computer), is a medication list. This way, if something was to happen and I have to go to the ER or anything like that, my medication list is always with me.

I can also say that I would be completely lost, if I didn’t program alarms on my phone for upcoming appointments, and to even take my medications! Yeah it’s annoying, but I don’t forget!

Having a list of my medications as well as my journal of how I’m feeling and how I’m doing on medications, etc., really helps when I go to see my neurologist. It also cuts down time that I have to fill out paperwork, which can sometimes be troublesome as I also have issues with Upper Limb Spasticity (in my hands) mainly in the summer months, so it’s not always “easy” to fill out paperwork.

One of the benefits from keeping things written down in my journal is that, my neurologist can see what triggered me not feeling better… like I stated earlier, my spasticity gets worse when it’s hotter outside, so I know what has caused the increase in my spasticity. (Mind you, I live in Central Texas, and it’s almost always hot here… so let’s just say “hotter”… like today’s “Real Feel” is 102 Degrees Fahrenheit.)

Now, I don’t carry around a small notebook with me anymore, but I do use my phone to keep notes on how I’m doing. You have to enjoy and embrace technology these days, as the famous saying goes … “There’s an APP for that.” (MSAA does have a mobile phone app, My MS Manager, which offers a journaling feature) It’s all true.

One last tip, if you’re the type of person to forget things easily, like I am see if your doctor would mind if you brought a voice recorder to your appointment. This will allow you to play back the visit and conversation to yourself when you’re at home. This is especially helpful if your doctor answered some of the important questions you had been waiting to ask.

National Fruits and Veggies Month

Posted on June 19, 2013 by Samantha Schech

June is National Fruits and Vegetable month. While we should be eating fruits and vegetables every month out of the year, June is merely welcoming back the garden-fresh produce that we’ve missed all winter long. The biggest part of eating right for summer is listening to what your body tells you about what it wants to eat. As you approach these summer months, do it with fruits and vegetables in your belly and in your fridge. Stock up on vegetables rich in color. Maybe have a bowl of fruit for a snack instead of chips. Encourage your friends and family to join you in your venture towards a healthier lifestyle!

Cantaloupe, watermelon and tomatoes are great fruits to help you stay hydrated. Great summer vegetables include summer squash, sugar snap peas, corn, bell peppers and onions. Eggplant, zucchini and green beans make a great source of dietary fiber.

–Broccoli is a nutritional powerhouse: It is full of vitamin C, calcium, fiber, and vitamin A.
–Carrots are a good source of fiber, which helps to maintain bowel health, and aid in weight maintenance.
–Watermelon, which is especially terrific this time of year, offers a juicy, sweet taste and high water content, while packing in antioxidants, vitamin C, and potassium.
–Grapes aid in the maintenance of healthy blood pressure. Eating the whole fruit instead of consuming the juice contains the added benefit of fiber.

Tips for your wallet: Fresh produce is more affordable when it is in season. Also, look for weekly specials on fresh, frozen, canned, and dried fruits and veggies. At a restaurant, always ask what vegetables, including salads, are available as substitutes.

What fruits and veggies will you be adding to your diet this June?

watermelon

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