This is an amazing informative article on the future of Spina Bifida. A must read, in my opinion!

https://www.thedailybeast.com/spina-bifida-could-vanish-with-this-experimental-fetal-stem-cell-therapy?source=TDB&via=FB_Page

Assistive Technologies you may find helpful

This past weekend, I attended the Abilities Expo in Edison NJ. While I was there, I had the opportunity to speak with a couple people from an organization called Advancing Opportunities. This is an organization that provides many types of services to disabled people and their caregivers. I was especially impressed with their Technology Lending center. This program allows people to borrow different types of assistive technologies to try out before investing money into something that may or may not be appropriate for their needs or their child's needs. I also asked if other states offer similar services, and they do. I have provided two links below for your convenience, the first one being for my home state of New Jersey and the other for the services offered in other states. I hope you will find this information useful.

http://advopps.org/

http://www.atconnects.com/at-act-programs

https://www.youtube.com/user/assistivetechcenter

See ME!

I am amazed at how rude and disrespectful people can be toward the disabled. Too many times I have heard stories of disabled people who have experience situations like this. Contrary to what some people believe disabled people are not invisible or stupid.  It’s no wonder some of us retreat from going out in public or don’t even consider applying for a job for fear of rejection or disrespect.

While talking to a couple Facebook friends, they were telling me about their jobs. One friend, who has Cerebral Palsy, was treated as if she was not even there some days. She was given less and less responsibility and eventually pushed out of her position. This is someone with a bachelor’s degree.

Another friend, who uses a wheelchair, works for a movie theatre in his area. He’s the guy who rips your ticket in half and directs you to which theater your movie is showing. He tells me all kinds of stories. Some are funny or interesting, while others are a lesson in patience and self - control. He gets talked down to, ignored, disrespected and even tripped over!  People walk right past him without stopping to get their tickets ripped, he gets talked to as if he doesn’t know what he is doing or in a very patronizing manner. And my favorite example he gave, “Oh, I’m sorry. I didn’t see you there.” Seriously? You can’t see a big ‘ol power wheelchair right in front of you?!

I have noticed since the introduction of the Americans with Disabilities Act, people are responding better to the needs of the disabled. More consideration is given when we apply for jobs and with regards to accessibility into areas of the community. But we still have a long way to go to truly be accepted into the non-disabled world as a whole.

I would like to encourage all of you to share your experiences on this topic so we can learn from each other and find ways to handle situations like these in the future. Thanks. 

BREATHE!

            “How do you ever sleep again, once your spouse has suffered a heart attack and is now home with you? I feel so responsible for his wellbeing, now that he is lying here with me… no nurse, no call button no machine monitoring all aspects of wellbeing, no sense of security that a hospital offers. I’m just not sure I will sleep, or as soundly as I’d like. :::sigh:::” ANH

 

What a profound statement. This was the reaction of a friend when her husband came home from the hospital after suffering a heart attack.

When I read this, it really hit me. How do you ever sleep again? In an instant, your whole world has changed forever.

BREATHE!

Sometimes life doesn’t go as we planned. A heart attack, a loss of a loved one, a disability. These can all be devastating. You feel paralyzed Why is this happening? A million thoughts go through your head. What if this happens? What if that happens? How am I going to get through this?

BREATHE!

Take a few minute to just sit and collect your thoughts. Write down what you are thinking. Make a list of questions you have for the medical professionals. Talk to the doctors, the nurses, the therapists. Talk to others who have been through it.  They can give you a been there done that perspective on things. Gather as much information as you can from anywhere you can. You can do this!

BREATHE!

There is a saying, “You never know what you can do unless you have to do it.” You have to find a way to get through this. This is your “new normal”. Create a support system to lean on and use it. You will be surprised how many people are willing to help. Things will be okay. You got this.

 

                                                 BREATHE!                                                

In my case, I was born in 1966. My mother was 43 and my father was 46. This was considered old to have a baby at the time. My father was mad at himself because he didn’t think that my mother needed to be pregnant at the time. My mother was concerned about her own health and my health as well.

For one of my college classes, I had to write an autobiography. This was a great experience for me. Being the youngest of five ranging in age from birth to twenty - three at the time I was born, I was able to get insight from them, as well as my parents.

My two older siblings were in seminary and college at the time I was born. My brother in seminary expressed concern for both of my parent wondering how they would be able to handle the pregnancy given our parents ages. When I was born, it was discovered I had Spina Bifida. This was devastating news to my whole family. What now?

BREATH!

At the time of my birth, the medical community was still working on developing treatments for infants born with Spina Bifida. I was born with the normal complications of Spina Bifida, open spine, bowel and bladder incontinence, orthopedic problems. In addition to these issues, I was also born with hydrocephalus (build-up of cerebral spinal fluid in my skull). This issue does not affect every child born with Spina Bifida. 

Things were touch and go for quite a while. I was in pretty bad shape. I had spine surgery almost immediately after I was born, I had a shunt placed in my head to control the hydrocephalus. This had to be replaced a few days after it was placed due to a malfunction. I even stopped breathing once. I was told a member of the medical staff had to perform CPR on me.

Things in life don’t always go as we planned, but there is always a way to get through them. Family, friend, loved ones and of course faith in God will always see you through the dark times. Just step back, take it all in. Things will be okay.

BREATHE!

I followed up with my friend about her husband’s condition. She told me that he has some degree of depression and anxiety. The doctor said this is normal for what he (they) have gone through. She also said that this has been a life altering experience, but they are getting through it. Amen.

 

 

 

 

 

 

 

 

Happy Birthday To Me!

Last week was my birthday week and I was very excited. I was turning 50! I always thought 50 was old. When did I get old? AARP here I come! To help me celebrate, several friends and family were planning on taking me out to eat. One friend even threw me a party! Why do celebrations always have to involve food? Normally, I am up for putting on the feed bag and stuffing my face. I guess that explains how I got to Weight Watchers, huh? This should be interesting.

Pizza, Chinese/sushi buffet, party, Mexican. How was I going to eat, I mean get through this week and stay on track with Weight Watchers? I decided I was not going to worry about my weight this week, but how? How could not worry about it, eat what I wanted, but not totally sabotage my weight loss efforts? I was going to have to dig deep for this one! Real deep. Time to pull everything I had learned from Weight Watchers. I could do this. It was just going to take some strategizing and major willpower. I was going to enjoy myself, but use what I learned about portion control and good choices.

Counting points really wasn’t an option during my birthday week because of the variety of foods, so I was going to have to use other techniques.

·        Eat something lower in calories before I went out. That way I wouldn’t scarf down everything in sight.  I’ve done that before. It was not a pretty sight.

·         Drink some water. This would fill my stomach to keep me from pigging out.

·         Making smarter food choices.  Healthier choices, healthier me. J

·        Use portion control This would be a good idea too.

The question is, could I actually stick to all of this?

And so it began. The first birthday meal came - Pizza. The friend I was going out with is also on Weight Watchers, so we decided together to go with their seafood pizza. We justified the seafood pizza by saying it was healthier than a greasy meat pizza. So what if it had Alfredo sauce on it. That didn’t count. Right? We also ordered a seafood salad with a light dressing. We both love seafood, so this worked well for both of us. It was delicious. One day down.

Second, Chinese/sushi buffet. This was not as easy as the pizza because it was all very good and so many choices. I decided to have what I wanted, and limit the portions. To celebrate my birthday, they brought out three little pieces of cake with a candle and sang happy birthday to me. I couldn’t leave the bite sized pieces of cake there. That would have been rude! J

 Then we decided we wanted ice cream. Again, I went for it. Vanilla, honey, ginger flavored.  I only got one dip and took my time eating it.  It was well worth it. Second day down.

The third outing was Chili’s. I looked at the menu online ahead of time and decide to have their fish and shrimp tacos. They were very good. I had some chips and salsa too. Water to drink. Oh, the sacrifices I make for Weight Watchers. Sigh…

And finally, The Dinner Party! I went over early to help with food prep and set up. While we were out getting last minute things for the party, we got small tuna subs for lunch to tide us over til dinner time. We didn’t even get chips!

Since I knew about the party ahead of time, my friend and I planned the menu together, and it ended up being mostly gluten free, which was going to help keep the carbs down, too. A few of the items were single servings, so that helped with portion control.

The Menu
Appetizers: glazed bacon, grilled asparagus, cheeses & crackers
1st course: baked shrimp
2nd course: Caprese salad
Main course: peach & Riesling glazed ham, sesame ginger chicken & pineapple kabobs, fresh green beans, potato salad, and cornbread

Dessert: Irish Cream Chocolate Mousse. They called it Jim’s Grave Dirt, (gummy) worms and a song included! Thanks, guys! LOL

Drinks: Pam’s Sangria, Malbec wine, sweet tea and water.

Dessert: Irish Creme Chocolate Mousse
Drinks: Pam's Sangria, Malbec, sweet tea, aYeah, my friend likes to really bring it! Everything was amazing. I can still taste the mousse!

The next week came. The day of reckoning had was upon me.

Weigh in Day!

I stepped on the scale. Moments later…. 3.8 pounds down!

What?

 I had to ask again to be sure. It was true. I was down 3.8 pounds after my birthday week! How did that happen?  Apparently the smarter choices when possible, portion control, and going to the gym in between all worked. Yes!

So, there it was. My birthday week was over. I was able to eat what I wanted, with a little sacrificing. I was able to navigate my way through some weight loss obstacles and I lost more than I thought I would. Happy birthday to me!  

I hope that this will be encouraging to others on their weight loss journeys. There will be challenges along the way, but with some planning, you can get through it.

 
Dessert: Irish Creme Chocolate Mousse
Drinks: Pam's Sangria, Malbec, sweet tea, and water

 

 

 

 

Dessert: Irish Creme Chocolate Mousse
Drinks: Pam's Sangria, Malbec, sweet tea, and water

Dessert: Irish Creme Chocolate Mousse
Drinks: Pam's Sangria, Malbec, sweet tea, and water
Dessert: Irish Creme Chocolate Mousse
Drinks: Pam's Sangria, Malbec, sweet tea, and water

 

 

Im Gonna Lose It! 0.2

0.2? I only lost 0.2? What happened? I went to the gym three days this week, I ate well. Well, kinda. Okay, maybe not so well. I’m still mad.

This week’s meeting theme was perfect for me. “Only.”  We talked about how even the slightest loss or gain can affect us. If we gained or lost just a little, sometimes we are disappointed. Especially if we had been steadily losing more. What we need to remember is that this will happen sometimes. Our bodies reach occasional plateaus when losing weight. This is our bodies going through an adjustment. Once this adjustment takes place, we will start losing again. We might have to adjust our eating or our exercising, but it will eventually start coming off again.

Although I paid attention to what was being said and I understood it, the minimal weight loss still bothered me.

When I got home I complained about it to my roommate and on Facebook - Underlined words, exclamation points, even a few expletives. My roommate and the people I talked to were all very supportive. They tried to help me see that although it wasn’t a lot, it was still a loss. Also, the scale might not be moving, but my waistline is. I have had to start wearing a belt again and I can no longer rest my arms on my gut!  J

A week has gone by. The day of reckoning has come. Weigh in day was here! Did I do it? Did I lose the 0.2 pounds? YES! I did. In fact, I lost MORE than 0.2. I lost 1.4.

Be patient with your weight loss. It will happen if you stick to it. As I said before, you didn’t gain it overnight it’s not going to come off overnight. Stick with it. It will happen. I would love to hear your comment and how you are managing your weight loss.

 

I Am Going To Lose It!

Many people with physical disabilities struggle with their weight. I am no exception. I have used every excuse in the book when it comes to not exercising or eating right. “I’m tired,” “I ache,” “Four pieces of pizza isn’t that much.” These excuses have led me to become very lazy.

I am not able to walk long distances, and I can’t stand for very long without having to hold on to or lean on something. I use a wheelchair for distances. Recently, I took notice of how winded, tired and sore I have become just from doing simple tasks. I came to the conclusion that this is from not taking care of myself. So, I made up my mind, to get off my butt and do something about it.

      Years ago, I felt the same way I do now, and I decided to join Weight Watchers. It worked before, but would it work again? I decided to give it another shot. I joined Weight Watchers.

 At the meeting yesterday, they talked about taking care of yourself in every way, not just physically.  Eating sensibly and exercising are part of it, yes, but you also have to take time for yourself in other ways. Take time to do something that you enjoy, whether it be reading a book, going for a walk or watching a movie. All this can help you maintain a healthy balance in your life, but let's face it, sometimes, it aint happenin! We all have busy lives, or sometimes we don't feel like it, or the disabilities sometimes that gets in the way. We've all been there at one time or another.

Taking all this into account, I am going to try to do this. I know it won’t be easy. I know I will not accomplish all of this at once. I didn’t get this way over night and I am not going to fix it overnight. It is going to take time. I am going to put the recommendation in to practice as best as I can, and see what happens. Who’s with me? I would love to read your feedback!