[michael-morale]

This was an excellent podcast. I had the pleasure of meeting these two sisters at the conference. I also met their two caregivers. Their attitudes and their spirit for life was something that I really enjoyed seeing in both of them.

[michael-morale]

I consider myself extremely fortunate. The caregiver that I had for nearly 5 years always involved her parents. Her family became my family. Her parents live with me and they are now my primary caregivers. While they don’t necessarily stay with me every hour of every day, I never have to worry about somebody not be here to help me. Finding a good caregiver can be extremely stressful. Trust me, I went through many caregivers before I finally found the ones who help take care of me now. When you can say that you trust your life in the hands of your caregivers, this is a huge burden that can be lifted from your shoulders. Fortunately, I’m lucky enough to say this.

[michael-morale]

Depression is a topic that I believe everyone has to address at one point in their life. While some of us may go through more depression and others, depression by itself is not necessarily something that SMA patients will encounter more than other individuals. When I start feeling down, I usually turn to my faith, but this is how I deal with this type of situation. I’ve never try to push my faith on to somebody else, but my relationship with God is my go to when times get tough.

[michael-morale]

I completely understand your feelings about podcasting. I’ve been producing YouTube videos for a few years now, and just recently started my own podcasts. I find podcasting to be much easier because I can speak more freely without having to worry about what I look like on video. Plus, editing an audio track is much easier than trying to edit video.

[michael-morale]

I’m not necessarily sure that I would call myself a scapegoat, but I do know that when I used to drive my own van, my friends would drive with me because I always got the best parking spots.

[michael-morale]

Yes, I think Envisagenic’s splicing procedure will be something that all the pharmaceutical companies will have to address.  If I’m not mistaken, I believe Envisagenics was suppose to be at the conference, but because of FDA regulations, since they were in their “moment of silence” period, they were only allowed to have a statement read outloud to those attending the Q&A session.

[michael-morale]

I use to face the same problem, and it’s a subject that plagues all of us.  Back in 2011, I voluntary went to a colon rectal surgeon and he put me in the hospital to perform a colostomy on me.  I know a lot of people may think it’s a bit overkill, but like DeAnn said, waiting an hour to get help, seems like an eternity.  My colostomy was the best option for me and it’s been a lifesaver.

[michael-morale]

Oops, I just realized I should’ve posted this here, sorry.

[michael-morale]

Thanks DeAnn.

[michael-morale]

I hope everyone likes my first video.  Thanks to Marta and Kevin Schaefer for their input and assistance.

[michael-morale]

When I was 22 years old, I purchased a vehicle and the state of Texas had the hand controls installed for me. I drove for about 20 or 21 years, and I will say that the freedom of being able to get out and go somewhere without having someone to go with me, was fantastic. As the SMA took control of my body and I started losing muscle strength in my arms, I knew it was time to think about what I was doing. Nobody told me it was time to quit driving. The state of Texas, my parents and my friends never requested that I quit driving. I had to ask myself as to whether or not the risk was worth the reward. After a lot of soul-searching, I realized that if I killed myself because I lost control of my van, this would be a normal risk that we all take when we drive. But, if I was to kill someone else due to my stubbornness and ignorance, that would be a decision that would be very difficult for me to live with. After making the decision to sell my van back to the company who built it, my father and I purchased a Toyota Sienna minivan that had been modified with the wheelchair ramp. This minivan gave me the ability to still go everywhere that I needed to, only, I would have to have someone else do all of the driving. Since my van that I drove was still in good shape, after I sold it back to the company who built it, they sold it to someone else who was having financial difficulties and they sold it for a price that this person could afford. This made me happy because I know that the vehicle that I used to drive was going to provide freedom for someone else. While this was a difficult decision for me to make, it was also an easy decision for me to make, because I knew that my time had come to give up this particular freedom. While I miss driving and the freedom that came along with it, I sleep better at night, knowing that I’m not only keeping myself safer, I’m also doing something that may save somebody else’s life.

[michael-morale]

For those of us with SMA, finding insurance can be a nightmare to say the least. When I went on full disability back in 2010, I automatically qualified for Medicare after being on disability for two years. This was a blessing because I was finding it very difficult to find insurance once I left ExxonMobil. I called certain insurance companies and told them that I wanted insurance and they were more than happy to help me. They would talk to me like I was their best friend, but when they asked me the medical questions and they found out that I was in a wheelchair and that I had SMA, the tone of their voice changed and most of them immediately told me that due to my medical condition, they would not be able to cover me. President Obama said that he was going to get the insurance companies to cover those of us with pre-existing conditions, but this never happened. When insurance companies hear the word SMA or they hear that we are confined to a wheelchair and we had a neuromuscular disease, they immediately disqualify those of us that are wanting insurance. I always said that french kissing and alligator would be easier than to try to find an insurance company that would be willing to accept us. It can be extremely frustrating at times, but I believe it will become easier in the coming future.

[michael-morale]

I have been using the Dragon Speak dictation software for many years now, and it has helped me. It definitely has a few quirks that are at times quite aggravating, but as you learn how to use it, you’ll quickly learn that the advantages far outweigh the disadvantages. I’m using this software to reply to all of the posts in this forum, and while I may have to go back and edit some of the text to make sure that the punctuation is correct, it actually does a very good job. If anybody is interested in the software, I would strongly encourage you to purchase it, because I think you will find that this will help you, especially when it comes to corresponding with others via text. This dictation software sometimes has difficulty distinguishing between certain words. (Example – there & their, to, two & too) While this is not a huge problem, it does force the user to go back and edit their document to make sure that everything is spelled correctly and to make sure that all the punctuation is in the correct position. Like I said, the advantages far outweigh the disadvantages.

I do have one suggestion if you decide to purchase the Dragon Speak software. They make a home and a professional version. I would definitely recommend that you spend the extra money and purchase the professional version because the speech recognition on this particular version is much better than the home version. Trust me, I have used both. This software can be purchased at any electronics retailer such as Best Buy or Fry’s Electronics. You can even purchase the software at some of your local office supply stores such as OfficeMax, Office Depot or Staples.

[michael-morale]

I learned how to play chess when I was in junior high. I joined the chess club and after getting beat numerous times by opponents that only made 4 to 5 moves of their pieces, I quickly became discouraged and figured that this game was not for me. I kept forcing myself to play until I became quite good, but as I got older, many of the friends that I used to play with went on to other things. Chess and checkers were always fun games to play and I miss playing these games with my friends. While you can download these two games on the computer and even play with someone who’s playing on their computer, it’s not the same as playing with someone that you can make eye contact with.

Since I started my treatments for SMA, my YouTube channel and my other social media accounts are keeping me quite busy. These outlets allow me to share information and to help others who are going through the same daily challenges that I am. Even though I’ve been doing this for nearly 2 years, it still exciting to share information and to hear from others that are going through the exact same thing that I am.

[michael-morale]

When I was 20 years old, a new type of specialty adaptive controls were developed that allowed me to be able to drive. Baylor Rehabilitation, located in Dallas Texas, had a van with adaptive equipment that was developed by a company in California. The company used to be known as Scott Vans. Today, the name of this company is Driving Systems Incorporated. Their equipment was modified so that it could be installed in a full-sized Ford van. You accelerated the vehicle by pushing forward on the steering wheel, and you would apply the brakes by pulling back on the steering wheel. It was called a zero effort steering system because it only took 12 ounces of force to accelerate the vehicle and also to apply the brakes. While a normal U-turn requires the driver to turn the steering wheel two or three full revolutions, I only had to turn my steering wheel 90°. In Texas, there were only three licensed drivers. While the cost of the entire system exceeded $150,000, the state of Texas, if you were approved, would pay for the hand controls in the installation. While the purchase of the vehicle was the responsibility of the driver, the state agreed to cover the cost of the installation which made it possible for me to be able to drive myself for over 20 years.

In Kevin’s original post, he discussed a system where you could drive with a joystick type of controller. I test drove one of these systems when they were first developed, and found it to be twice as sensitive as the one that I used on a daily basis. The state of Texas was probably one of the few states who would not register or accept this type of vehicle due to its oversensitive type of controls. I have heard from other people that a new type of joystick drive vehicle is now available for those of us in Texas, but like Kevin said, I think even I would have difficulty with using this type of system due to my muscle weakness. While I know that I’m going to get stronger in the future, this may be something that I can look into at a later date. Losing my ability to drive myself without having someone help me was a challenging time in my life. If I have the ability to regain the ability to drive myself, it would be something that I would definitely look forward to.

[michael-morale]

When I was growing up in the 70’s and the 80’s, my first taste of video games was Pong. While this game was nothing more than a glorified video game of tennis, it fascinated everyone because it was our first glimpse into technology. My arms and hand strength were quite normal whenever I was younger, so I had no problems using the Atari game controls, and even some of the other controllers of the video consoles that followed. Now that the strength in my hands and arms have decreased, I can see the advantages of an adaptive game controller. While I’m not much of a gamer, if these new adaptive controllers will work for me, it may be something that I will look into.

[michael-morale]

This is an interesting topic to discuss, even though I was never able to accomplish this. Even though I lived with my parents for the majority of my life, our relationship, even though it would always be a parent and child relationship, grew to more of a coexistence and helping relationship. As my working career was established, my parents and I decided to build a new home closer to where I worked. At that time in my life, I was able to drive myself with the help of a specially modified full-sized Ford van. I was in charge of ergonomics and safety for ExxonMobil Corporation and my responsibilities included everything within our Dallas regional area. Moving closer to my work was a priority in my life, and my parents and I agreed that the house we were going to build would primarily be my responsibility. While my parents lived with me in our new house until their passing, my mother passed away 2008. Approximately 3 years after her passing, my father’s physical condition warranted me to start looking into a caregiver that would not only be my primary caregiver, they would also help him with some of his daily tasks. My father passed away in 2015, so I guess you can say that by him passing away, it was a unique way for me to be thrown out of the nest and it became my time to fly.

For those of you with SMA that have the ability to move out and find someone to help you with your daily life, I applaud you. As we were growing up, I’m sure that many people thought that we would be under the wings of our parents until the day that we died. Little did they know that our lives would carry on and that we would create a life for ourselves.

[michael-morale]

Over the past three years, I lost the ability to lift my right hand to my mouth. Fortunately for me, I have caregivers that help me eat each and every day. My close friends are also very understanding and will help me eat if we get together. While it was embarrassing at first to have someone feed me if we went to a restaurant, my caregivers and my friends told me that if it wasn’t embarrassing for them to feed me, then it shouldn’t be embarrassing for me either. It took me a while to feel comfortable with having someone feed me in public, but this is something that I had to tell myself that it was just part of my life. Besides, I pity the person who would dare say anything to me because my caregivers and my friends would definitely have something to say about it. My friends and my caregivers are very protective of me, and for this, I’m very thankful.

[michael-morale]

I usually get up around 7 o’clock in the morning and I typically do not go to bed until around 10 o’clock in the evening. Only on rare occasions do I get out of my wheelchair during the day. I guess over the nearly 53 years of my, I’ve learned to change positions in my wheelchair multiple times during the day so that I do not need to get out of my wheelchair. On the rare occasion that I do get out of my wheelchair and lay down, it definitely feels good.

[michael-morale]

When I was two years old, my mother taught me how to swim because she thought it would be good physical therapy for me. The daycare center that I went to had an indoor swimming pool. On Monday, Wednesday and Friday of each week, my mother would come up there and get into the pool with me and teach me how to swim. Many of the parents of the other children that attended the same daycare center noticed how my mother was teaching me and asked if she would also teach their children how to swim. The daycare center set up a swimming class for my mother to teach three days a week. After doing this for a few years, my parents decided to build a swimming pool in our backyard. When the other parents found out that my mother was no longer going to be teaching at the daycare, they convinced her to continue teaching their children out of our backyard.

Swimming was very beneficial for me because it kept me flexible and it gave me a great way to exercise each and every day during the summer. After my scoliosis surgery when I was 15 years old, I lost much of my flexibility and I found it very difficult to enjoy swimming. Aquatic therapy is something that everyone should look into because being buoyant in the water, this will help relieve pressure on your joints and will allow you to stretch your muscles more effectively.

[michael-morale]

When I was a kid going through school, I had to train my bladder so that I could make it through the entire school day without having to go to the bathroom. This was a pretty simple task because I would just limit the amount of liquid I would drink during the day. If I had to have a bowel movement while I was in school, my mother would have to come up and get me and take me home. Once I was finished, she would then take me back to school for the remainder of the day.

This routine that I followed in grade school was also the routine that I had for high school and college. As I got older, and my father became increasingly weak due to Parkinson’s disease, I decided to have a colostomy. I found a fantastic colon rectal surgeon who agreed that a colostomy would definitely help me live a more comfortable and functional life. I have full control over my bladder, and my colostomy allows me to go about my day without worrying about having to go home. This also allows me the freedom to go out to eat and to socialize with my friends, and it’s one less concerned that I have to deal with as I get older.

While a colostomy was a major procedure, it is definitely a procedure that I would recommend to anyone if the circumstances were the same as mine. Everybody is different and while some people may have someone there that can help them, my colostomy gives me peace of mind that has forever changed my life.

[michael-morale]

I recently had a CT scan performed on my right leg. The doctor told me that I had severe muscle damage in my right hip and he recommended that I get a new wheelchair cushion. Laura, my physical therapist, told me about a cushion that would be beneficial for me. One recommendation that I would have for anyone looking for a new wheelchair cushion would be to talk to the company that is going to be providing it to you and ask if they could bring one of these cushions to you so that you could try it for a few days. Never buy a new cushion until you try it first, because the correct wheelchair cushion is very difficult to find. You do not want to spend that kind of money, or have your insurance company spend that kind of money until you know that you have chosen the correct wheelchair cushion. Once you have had a few days to try it to make sure that it works for you, then you know that you are getting the cushion that you need.

[michael-morale]

These are excellent questions that need to be asked anytime you hire a personal care assistant. One other suggestion that I would have would be to make sure that you do a criminal background check on the individual that you are thinking about hiring. While some agencies do this as their part when they hire them to work for their agency, many times, they only do a state wide check. Running a nationwide background check may cost you a few dollars, but nationwide checks usually examine more areas that could be of concern to you. An example of that would be that the agency that runs a state wide check may only want to know if they have any major criminal offenses against that particular individual, whereas a nationwide check will also examine if they have any minor thefts, personal injury claims and other offenses that could come back to haunt you if you’re not aware of them. One other example would be that if you live in Texas, and they run a state wide criminal background for this person in Texas, it may come back clean. The only problem is if that individual lived in another state, and they had a criminal record within that particular state, it will not show up if the background check company only runs a background for your particular state.

There are many different background check companies that are available throughout the nation. The easiest way to locate them is to do a Google search for nationwide background search companies. When you contact them, make sure that you let them know that you want a nationwide background check and not just your local state.

[michael-morale]

The only thing that I had to do with regards to modifying my clothes is to have an alteration to any pants that I purchase. My right leg is about 1 inch shorter than my left leg because my right hip is higher than my left hip. I no longer wear dress shirts because tucking them into my pants is virtually impossible. It also makes it difficult because I have a colostomy. Shorts and shirts usually fit me without a problem. I have seen pants that you can buy that you can put on while sitting down. They drape over the top of your body like a towel and then you have someone tuck them around you and under your legs. While they’re not quite as nice as an actual pair of pants, they do provide an alternate way to wear pants for people that are confined to wheelchairs.