Kennedy’s disease

Kennedy’s disease is rare, it effects men as this is typically pasted now by their mom’s. The mother has symptoms but is a carrier. It is very complex as how it effects every male differently but remains the same disease. They say it is slow progressing and you can live a long time with the disease. As it can change the attitudes and the life styles of those effected  . To Learn more about Kennedy’s disease Please visit: www.kennedysdisease.org

 

Welcome… I’m Rosemarie

Welcome, I’m Rosemarie

I am a wife, mother, and a grandmother . I truly enjoy spending as much time with all of my grandchildren as I can as they grow up so fast , enjoying life is of the utmost importance … I try daily to find the positive in every situation , as some days it can be more difficult then the next but we have to try .  I have started to this blog for many different reasons .. To start I would really like to help others  with frugal living, recipes,  Eating healthy, and bringing attention to a rare disease that is near and dear to my heart as it affects my family and many others but doesn’t have the enough exposure.

Money in glass jar on wooden table

Frugal Living

I myself have been diving into this living with less trying to cut my expenses and trying to go without certain products. As I feel that as I get older I do not truly need so much. So I am challenging myself to start eliminating unnecessary products in my life. Today’s society has us buying so many different products because they better then what we had before.  Do we need more products and how much better are they then what we own already? I call it “keeping up with the Jones” as because the neighbor has a new car you suddenly want  to get a new car but do we need the new car or can we maintain the one we have to help it last as long as possible?

Recipes/Cooking

I enjoy cooking, finding New recipes, always looking for healthy alternatives so as I continue to try new recipes I would love to share them with my opinion of the recipe. Recipes and cooking are truly a passion of mine .. I enjoy spending hours in the kitchen finding different recipes and alternatives to cut the some of the unhealthy out of the recipes. As we all always want to become healthier and try new delicious recipes.

My Journey

But  I first I must say I am on a journey all of my own . My husband was diagnosed with Kennedy’s disease , which is rare and unknown for the most part around the world. After many years of not knowing what exactly was going on with him, we found the right Doctor who would listen and take the time to ask questions, look at patterns and be ready to help when we had no idea what or why this was happening. It was all discovered because my husband was always exhausted, working 2 jobs to support our family . Well after many different avenues the Specialist decided to ask for a DNA test for Kennedy’s disease- (Kennedy’s Disease (also known as Spinal Bulbar Muscular Atrophy, SBMA, or Kennedy’s Syndrome) is a rare and currently incurable and FAQ-non-treatable X-linked recessive genetic progressive neuro-muscular disease. Both the spinal and bulbar neurons are affected causing muscle weakness and wasting (atrophy) throughout the body which is most noticeable in the extremities (legs/arms), it is also especially noticeable in the face and throat, and causes speech and swallowing difficulties, along with major muscle cramps as well as other symptoms.)  when it came back positive we had some answers but not nearly as many as we would like. Still 3 years later we don’t have all the answers but a better understanding as to what is to come, but there is no cure or medication to help with the symptoms, there are many therapies that you can do, speech, physical to name a few. However this disease affects everyone differently and the progression is different with every person. We went to San Diego ,California in November of 2016  and met a lot of wonderful researchers and a lot of great people we now call friends as we talk through social media. However there is not a lot of information to help support those who suffer from this rare disease. With the help of others I am hoping to bring awareness to this rare disease and build support for those who suffer and their partners as we can all use some more resources.

Rare Disease Day February 28,2018

Kennedy’s Disease is near and dear to my heart as my husband suffers from this rare disease, I would like to continue to raise awareness as to help researchers learn how to help the many who struggle with this rare disease daily. I have had the opportunity to meet some great people through websites and conferences as we continue to learn more and more about what affects it has all of daily lives whether we are partners, or the inflicted ones. There is always a new challenge and as I would like to do as much as we can together to help one another with whatever needs to be done.