Day 157-Wednesday's Medical Minute-Reader Feedback

Today’s post was originally going to be called What To Eat Wednesday, where I would talk about foods I eat while following a Paleo lifestyle. After conferring with Miss Stephanie, however, I decided there is enough info out there in the blogosphere about food and recipes in general, and that I could do the most good and help more folks by talking about the health issues we share, and what can be done about them.

For instance, I have PKD- so maybe sharing details about it could help someone else with it.

Stephanie has a rare form of Muscular Dystrophy called Friedreich’s Ataxia- I could explain some things about what she goes through and how that might help others.

My husband has recently been diagnosed with stage 1 Prostate cancer- again, I could talk about how we arrived at this and how early detection might save another man’s life.

You get the picture, however, I want your feedback so I know how to help you as well. It seems we all have something or know someone who has something that affects us on a daily basis. How do we best deal with it? What are the best ways to treat it? What do you want to know more about or what can you share with me that readers might benefit from?

Say you have diabetes or know someone who does. I want your questions about that. I want to know how I can assist you, or someone you love. Maybe through my research, we will all learn something useful about conditions we didn’t even know existed. Before I met Miss Stephanie, I had never heard of FA. Now I’m learning all about it. In her case, diabetes is a side effect. It is a mystery she herself is still trying to figure out and deal with. Together, we work on her diet to find out what works to keep her numbers low. She also has heart problems because of her disease, eye problems that make her vision “snowy” and loss of balance and coordination. Are there others out there that may benefit from knowing these details? Probably.

That’s why I need your help. You tell me what you want me to cover on the blog. What do you want to know more about, or what questions may I help you get an answer to?

So, with all that being said, today I will discuss some aspects of FA in an effort to explain what someone else might be noticing in their child, or just to know what Miss Stephanie deals with every day.

Stephanie at home, showing off her new hair color
Stephanie at home, showing me that beautiful smile!

Friedreich’s Ataxia is named is named after the German physician that first discussed it in the 1800’s. It is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It strikes approximately 1 in 50,000 and manifests in initial symptoms of poor coordination such as gait disturbance. It does not affect cognitive function but can lead to heart disease, scoliosis, and diabetes. Stephanie has all of these problems which require her to use a wheelchair, she also needs assistance with feeding, dressing and bathing, making her totally dependent on others to function.

The Ataxia of FA results from the degeneration of nervous tissue in the spinal cord, in particular sensory neurons essential (through connections with the cerebellum) for directing muscle movement through the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath ( the insulating covering that helps conduct nerve impulses). In Stephanie’s case as well as others, symptoms began early in life, between 5-15, and began with muscle weakness in the arms and legs, loss of coordination, vision and hearing impairment, slurred speech, curvature of the spine, a deformity of the feet called pes cavus- or high plantar arches and carbohydrate intolerance (diabetes), though about 10% of those diagnosed develop type 2 diabetes). The heart disorders are atrial fibrillation and resultant tachycardia (fast heart rate) and hypertrophic cardiomyopathy.

It presents before 22 years of age with progressive staggering and frequent falling. Lower extremities are more severely involved. The symptoms are slow and progressive and after 10-15 years with the disease, patients are usually wheelchair bound and require assistance with all activities of daily living.

So, if your child is experiencing any of these symptoms, you need to get medical assistance. It is not their fault, they are born with this genetic problem. They cannot help it if they are stumbling or suddenly lose the ability to hold a spoon and feed themselves. You will require the assistance of many doctors, including but not limited to a pediatrician, cardiologist, nutritionist, neurologist, optometrist, ophthalmologist, and other specialists to deal with all of the conditions it causes. You will also need help from therapists, aides and caregivers, since managing all of these issues can be stressful on the family as a whole.

Since the cognitive function is still in tact however, patients can and do get involved in the treatment process, attend school, manage their social life, use the computer, watch television, read, and otherwise interact with caregivers and parents, doctors and aides, attend church and other places, go to the store, enjoy cultural events and even go on cruises! Stephanie is witty, funny and charming, loves almost everyone she meets and is loved in return. She deals with a lot of problems but remains strong in her faith and is thankful for what she can do and doesn’t focus on what she can’t.  She helps with running the blog set up by Camp Craig Allen, an organization who provides a place where children and adults with disabilities can go for fun, and therapeutic activities.

Stephanie put herself through college and managed for many years on her own, however, she had to move back in with her parents when the disease progressed to the point she could not function without 24/7 care. They reached out for assistance through a government agency called CLASS, who helped with issues like obtaining caregivers and medical equipment.

My hope is that the information I’ve shared here can help someone else who may be dealing with issues like Stephanie’s, and if you have questions, feel free to ask them. What I don’t know how to answer, Stephanie can fill in the blanks. She is extremely knowledgeable and wants to help others learn more about her disease.

For more information see MDA.org and NORD-National Organization for Rare Disorders

 

 

 

Day 37-Support a Cause Week-PKD Walk

Fall is shaping up to be very busy, with all kinds of walks and festivals to help support worthy causes. Everything from my personal health issue (PKD) to one of the most famously supported causes, breast cancer awareness.

Although I have covered the PKD Walk before, it bears repeating, since I’m trying to reach a specific monetary goal for my team-$250, not that much in the big scheme of things, but if every team walking reaches their goals, it would help the foundation so much in their search for new medicines to treat and/or cure this potentially fatal disease.

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As stated before, you can donate a little (or a little more) to my team by heading to www.walkforpkd.org/northtexas and search my name, Kim Smyth. So far, one kind blogger that follows my blog donated $10. That was very sweet. I would like to point out that if all my followers donated just $5 each, I would definitely reach my goal. I am personally donating $50 for myself and a memorial pledge of $50 for my mother who passed away from complications of PKD in 2014.

I’m going to post these causes, each day a different one, starting with the month of Oct. and working backwards to Sept. my thought being about how much time you have to get ready for each one. Tomorrow’s post will feature some kind of walk for breast cancer, (there are so many) I wanted the latest one in October for my area so we would all have more time to get ready for it. Even if you don’t live in the area, you can make a pledge/donation at the website I will be providing.

We should all do our part to help out worthy causes when we can, don’t you agree? If you can’t help financially, they always can use volunteers. However you choose to donate, with your time, or money, it will all be greatly appreciated, and you can feel good knowing you helped make a difference.

Now a bit about PKD for those who have never heard of it. The letters stand for polycystic kidney disease, it is potentially fatal because the cysts will at some point grow large enough to choke out the kidneys and at that time one needs to either go on dialysis or get a kidney transplant. Polycystic means multiple cysts. Nothing can be done currently to remove or drain the cysts, although they are always working on finding medicines to treat it. I choose to be proactive and at least eat as well as I can, that is why I live the Paleo lifestyle. My mom chose dialysis, I found out my diagnosis when being screened as a potential donor for her. By the way, every person with PKD stands a 50/50 chance of passing it to their children. Mom was on dialysis for 18+ years and eventually, her organs started shutting down one by one and she went into a nursing home and then on hospice about a month later. She lingered another week or so, at which point they made her comfortable with medications and stopped feeding her. It was so painful to witness her wither and not be able to communicate with her due to her dementia. I assume it was a very painful and uncomfortable month for her as well, although she could not express this in words. I have decided if and when I progress, I will opt for a transplant, if I’m able. I’m told one can’t even get on the list until you become more symptomatic. Currently, I have too many cysts to count but my kidney function is fine and my lab work is perfect. I was lucky to find out early enough to get on top of it, my doctor keeps very close tabs on me.

I want to help others as well as myself, that is why I became a member of the foundation and why I’m bringing attention to this cause.

Please, go to the PKD Foundation for more information about this disease and/or how you can help. I appreciate what ever you can do, and so will thousands of others affected with this disease. Until tomorrow, see you on the patio. 😊

 

Day 4- Garlic Parmesan Salmon-2 New Updates

Omg, guys, I have to tell you I’m so excited and overjoyed right now! So, before I get on with today’s recipe, I have to share my joy! Yesterday, I accompanied my dad to the ENT for a hearing test and a hearing aid exam to see if they couldn’t find something that works better than his current hearing aid. Yes, he was down to using one. His right ear has always been bad, due to a childhood injury (by a dr. no less) and he was using the aid on the left ear. Anyway, after the test and exam, he was fitted with a new pair that were customized for the hearing loss he has. The minute she put them on and softly asked him “how do I sound now?” His smile was wide as he said “Fine!” I’m telling you, I started to cry, I was so happy they worked! It’s a trial for a week and then we go back for the ones he’s getting. I’m so exited and happy for him, it so frustrating not to be able to hear.  At that moment, neither of us cared what the cost was, and yes, it was high, my problem with that is the man worked all his life and put in his dues to SSN- yet Medicare pays nothing!! His secondary ins. will kick in $300 which doesn’t help much. The technology of these aids is so amazing that my feeling was, they are worth every penny to see him be able to hear (and without surgery needed!)

My second joy this morning is that I’ve recieved my first donation to the goal of $250 that is my team goal for the PKD Walk. I can’t tell you how exited I was to see that this morning. Again, if anyone wants to help me reach my goal, any amount helps and you can go to http://walkforpkd.org to donate or find out more.

Alright! Recipe time! Today I’m going to share an example of a meal we used to make a lot. Lately we just throw it on the grill but this works great in the winter. It’s a great, easy way to cook fish, in this case, it’s wild caught salmon. Check out my Pinterest page Everything Paleo for the pics and the actual recipe and notes.

Today’s recipe comes from championrecipes13.blogspot.com and it’s called Garlic Parmesan Salmon.

6 oz. portion of salmon

7 asparagus spears

1 tbsp (I use Kerrygold) butter

1 tbsp grated Parmesan cheese

1 clove garlic pressed2 tsp of lemon juiceGround black pepper to taste
Directions

  1. Preheat oven to 375F
  2. Cut a sheet of aluminum foil large enough for the the asparagus and salmon
  3. Arrange asparagus spears on foil and top with the salmon
  4. Mixed the remaining ingredients in a bowl to make a paste
    Smear the mixture on top of the salmon
  5. Cut another piece of foil large enough to cover everything and fold up the sides
  6. Place on a cookie sheet and bake for 30 minutes

That’s it, easy peasy! Wild caught salmon is best and also grassfed butter from Kerrygold is ideal. Sorry, I can’t seem to get the pics to load so please go to my Pinterest page and check out everything Paleo to check out the recipe. Gotta go, see y’all later, on the patio!😉

 

Day 3-Recipes and A PKD Update 

Good morning everyone! Yesterday I started Lets Talk About Food Week but before we move on to the recipe, I need to give y’all a little update on the Walk for PKD. As you may know from my post earlier in the month, I’m planning on attending the walk with family and as many friends as I can gather. I will be making a pledge and I’m asking you if you could possibly help me reach my team goal of $250 by pledging whatever amount you feel comfortable with. If I was to get all my followers to donate just $1-$10 for example, I would reach my goal in no time flat! This is for a very worthy cause, your donation helps support research and promotes advocacy and awareness of polycystic kidney disease and improve all the lives it affects.


For more info and to learn how to make pledges in my name if you want to help my team, or to register to walk yourselves, please go to the website provided on the card pictured or go to the foundation website at www.pkdcure.org. Let me thank you ahead of time for your interest and I appreciate whatever you can do.

Ok, update done, let’s get to today’s recipe shall we? I thought today I’d go more savory since I’m trying to get back to basics myself! Looking at my Pinterest page, I realized even though they are Paleo, I have way too many sweet things on there!

So for today’s recipe, I thought I’d help out all those needing a quick breakfast that can actually be taken to go with you if you like! I do this one a lot as it’s easy peasy and ready in less than two minutes! It’s from The Kitchn and it is called Western Omelet in a Mug. thanks to Kelli Foster for sharing this one on Pinterest!

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Recipe: serves 1

2 lg eggs

1 tbsp milk (I use almond or coconut)

1tsp chopped onion

2 Tbsps chopped bell pepper

2 slices deli ham, chopped

1 Tbsp shredded cheese

Salt and pepper to taste

Spray the inside of your mug with coconut cooking spray (use a microwave-safe mug)

Crack the eggs into the mug and beat to combine. Whisk in the milk, onions, peppers, ham and spices. Microwave on high for 1 minute, stir, top with cheese and cook for one more minute until eggs are completely set. Remove and serve immediately.

Check out my Pinterest page at Everything Paleo for exact recipe and notes. My special note is to carefully stir after the second minute of cooking because I’ve had the eggs pop some air out before, I always use caution now to prevent possible burns and getting the heck scared out of me, lol!

As always, thanks for reading, following and liking and please comment or share what you like here! See ya later, I’m going to warm up my coffee and thaw my legs out on the patio.😉

Whats New With PKD and Me

Some of you may know from reading my old blog that I have PKD, a genetic disorder I inherited from my mother. Well, I came across an email today inviting everyone to attend the Summer Fun Day with the North Texas Chapter, which is really an event for The United Way. I wasn’t even aware there was a North Texas Chapter for PKD. That’s how out of touch I am with what’s going on in PKD news. I was aware there’s an upcoming walk for PKD in October, only because a couple of months ago, I became a member of the foundation so I might learn a little bit about the latest research for a cure. In any case, the Chapter will have a table there so people can sign up for the walk, or just learn more about the North Texas Chapter. I should probably get more involved myself, however, since I’ve been diagnosed, I am asymptomatic and honestly have not thought too much about it. I am at a certain stage and I’m managed by a doctor, I just try not to think about it much. Maybe I should. It would be nice to have a support group, meet other people with the same issues so I can someday relate, but since I’m not sick, it’s hard for me to want to be reminded of everything my mom went through. Is that wrong for me to feel like that? I realize I may be in the same boat someday, but I’m healthy right now and that’s the way I try to manage it. By eating the way I do, keeping my doctor up to speed and taking my medications. I also do some things in the alternative health realm, like using essential oils and getting flax and chia in my diet.

Anyway, I feel like I should at least try to bring awareness to a disease that a lot of the population deal with on a daily basis, so I’m going to share the flyer and the info. Maybe I’ll even go to the event or the walk. At the very least, maybe more people will learn about it and want to help. Maybe getting that email was a sign, maybe this could be the start of something new, a way for me to learn more and help others with the same problem. I could do some research and write some articles to better familiarize myself with my own disorder. What a novel idea! My wheels are starting to turn, who knows where this could lead. So, go check out the event, grab a dog or a frozen drink, heck it might even be a fun way to grab a quick lunch and get educated in the process. Let me know what you think, maybe I’ll see you there!

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Have a pleasant evening, hope we talk again tomorrow!