“Partners, and Caregivers”

  • Know your needs in the partnership
  • Align the partnership
  • Share responsibility
  • Respect each partner
  • Listen and communicate
  • Evolve and accept growth
  • Reflect, evaluate, and re-prioritize

I believe the hardest thing has been always feeling I was in control and didn’t need anyones help or assistance.  But how have the tables turned, I lean on my wife more then ever before, with the understanding I try everyday to be as independent as possible.  I truly see how tired my wife gets and how frustrating this illness has made her feel.  I respect her time and appreciate everything she does for me.  I sometimes push her towards taking a time out and spending time for her.  She needs time for her self and to unwind from all of this.  And don’t take her or him for granted because we need each other for support and good health.

Living on the same page of life, what does this mean?  Having an understanding and knowing when to ask for help and doing the simplest things you can do.  Counting your wins and telling yourself you got this.  Sharing your positive thoughts and negative feeling when possible, not holding things inside.  Sharing your wins and losses.

Sharing responsibilities sometimes can be tricky, simply because using your mind and performing the tasks which can be completed by making phone calls or setting up appointments and taking as much off the plate as possible.  Our bodies may not function but our minds are just fine.  Not making a mess and doing your best in every way possible.  And no nagging, this is the worst thing possible.

This is sometimes tricky, this illness at least for me gets very frustrating and difficult and our expression don’t help.  I sometimes feel bad because I want or need help but I don’t want to bother or ask for it.  She will always ask me if I need help and I just say no.  I feel inside bother and hurt because she only wants to help me.  But I’m working on it everyday.

The listening part sometimes gets very difficult, because I see things and don’t communicate it correctly.  It’s so difficult and so frustrating because I just want to get up and fix it.  I feel like things are getting better, I try so hard to shut my mouth and then listen.  Communicating and openness in all ways will make things so much better.  I tell my wife everything, good or bad I don’t have anyone else who understanding me better than her.

Each day we must accept and fight this illness with every ounce of our fiber.  We must never give in because each day bring hope in finding a cure.  We must appreciate all that we have accomplished and those who we have touched.  And the growth inside begins with positive thoughts and staying focused on our health and those who look for better days.  Our family and friends give us the strength and encouragements each and everyday.  So growth is important mentally and physically.

Each day, we must always remind ourselves of all the accomplishments and things we have done prior.  Set new goals and targets with a slightly different path, but utilizing our strengths to achieve those new goals.  Yes, we must hit the reset button and start a new but better, because I see things completely different then before.  So re-prioritize your self will make the path much better.

It’s a fact we all struggle with something, no matter what the issues are their important to us.  Some of us may have financial debt issues, and others health concerns, and anything else you could think about.  Then why the heading, I believe there are many choices to our struggles, and if you really sit back and think about them, the answers are right there.  When you are ill, sometimes the solutions or resolve are a bit more challenging.  And that’s where are partners and caregivers comes in.  The simplest things are now the hardest or a bit more challenging in completing our tasks.  Some of us may not have partners or caregivers, so then what? How do we cope with the issues at hand, where do we go for help?  Finding the answers to our questions sometimes may be difficult and strenuous.  There are many site and forums that can assist us, contacting PatientsLikeMe, and other blogs sites associated with Partners and Caregivers.  

Families may not have the resources available to them, finding the information provided will make a difference one patient at a time.  Finding the help and support is vital, everyday someone requires assistance.  I believe everyone deserves a helping hand when possible, no matter what.  Creating a chart or brochure will truly make a difference, and brings peace of mind to those who need it most.  So when your love one become ill and funds are low, they need a place and solutions to their questions and concerns.  Sending them to a site may not be the answer, but speaking to them makes it better.  Just having someone to listen and allowing them to vent their frustrations are so important.  It’s are duty as civilized human beings.  Giving back to those who can’t and providing the information is key.

 

 

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Fighting, ALS (amyotrophic lateral sclerosis) Gluten-Free Diet

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Soon after being diagnosed with ALS, my wife began to read and she read, I read but, it would depress me so that I stopped reading about ALS.  Now, I’m doing something about it.  Its not only about losing weight but eating better and cutting out the foods which could contribute to your illness.  I have lost over 35 pounds in 8 months just by switching to a gluten – free diet.  Gluten is found in wheat, rye, barley and any foods made with these grains.  Avoiding wheat can be especially hard because this means you should avoid all wheat-based flours and ingredients.  These include but are not limited to:

  • White Flour
  • Whole Wheat Flour
  • Durum Wheat ( a kind of hard wheat grown in arid regions, having bearded ears and yielding flour that is used to make pasta)
  • Graham Flour ( denoting unbolted wholewheat flour, made from this) graham crackers
  • Triticale ( a hybrid grain produced by crossing wheat and rye, grown as a fodder crop)
  • Kamut
  • Semolina (the hard grains left after the milking of flour, used in puddings and in pasta)
  • Spelt ( an old kind of wheat with bearded ears and spikelets that each contain two narrow grains)
  • Wheat Germ ( the embryo in a cereal grain or other plant seed)
  • Wheat Bran ( pieces of grain husk separated from flour after milling)

These are foods that are usually made with wheat include:

  • Pasta
  • Couscous ( a type of North African semolina in granules made from crushed durum wheat)
  • Bread
  • Flour Tortillas
  • Cookies
  • Cakes
  • Muffins
  • Pastries
  • Cereal
  • Crackers
  • Beer (witch in include wheat barley)
  • Oats
  • Gravy
  • Dressings
  • Sauces

You made be thinking, what will I eat.  But there are still plenty of gluten-free foods out there.  Here are your choices from many fresh, healthy foods like fruits, vegetables, beans, dairy, nuts lots of nuts, and gluten-free grains like quinoa or rice.  So don’t get discourage there are lots of foods mention that are gluten-free.

More food you would not suspect to have Gluten:

  • Broth in soups and bouillon cubes
  • Breadcrumbs and croutons
  • Some candies ( limit sweets)
  • Fried foods
  • Imitation fish
  • Some lunch meats and hot dogs
  • Malt
  • Matzo
  • Modified food starch
  • Seasoned chips and other seasoned snack foods
  • salad dressings
  • self-basting turkey
  • soy sauce
  • seasoned rice and pasta mixes

So there you have it, many additives and ingredients in packaged foods that may contain gluten.  Alway check  labels before making any purchase.  For a more comprehensive list of gluten containing additives, search CELIAC DISEASE or google.  Causes and effects from gluten.

Please click on this link: