What’s the most important piece of advise you can give to other couples in your situation?

The first word that comes to mind, patience and more patience.  There are no right or wrong ways of doing things, it’s just how both of you react and what action or plans have been discussed.  First comes the falling or not being able to use your hands or walking without use of a walker.  It’s all different for everyone, but the most important part of this process would be communicating and understanding each others feelings and how this illness will change everything.  It’s hard, and very challenging for my wife, coming and going I can only imagine the feeling or heart aches she endures.  To have compassion and empathy really helps, you don’t need to guess what’s she feels only to agree that it’s difficult.

The hardest part for me, not being able to provide or help like before.  Trying your best doesn’t seem to work as before.  Things have changed and everything seems 100 times more stressful.  Wanting to be as independent as possible and seeking help may be the best idea.  It only creates more stress and ill feeling and anger when you try and fail causing yourself pain or injury.  Take everyday step by step, don’t feel helpless or sadness, your attitude and thoughts create a better environment for both of you and your family.  For me it’s called positive in and positive out, every words or action matters and your facial expression matter the most.  You must become a good porker player, not showing what’s in your hand.  Because when you show discomfort or anger your better half will feel like he or she is to blame.  Yes, it’s tough and not easy, but what can you do, go with it and create the best situation possible.

As for your health, changing your diet creates the best results.  Cutting out all dairy products, also going gluten-free and watching your carbohydrates, eating more protein and vegetables generates the energy needed.  There are many supplements and vitamins to choose from.  Your both in it together, so your efforts and research are critical don’t wait for someone to tell you how to fix you.  You and your partner or caregiver must ask questions no matter how silly they may sound, there are no wrong questions only the ones that are not asked.  And join PatientsLikeMe and share your informations and compare your data with others, together we win and everything matters.