[michael-morale]

I’m like DeAnn, I’m not much of a breakfast eater. Yesterday when I went to go see my pulmonologist, my caregiver and I got there about an hour early so we went to the cafeteria and we both had breakfast. I usually just eat lunch around 2 o’clock in the afternoon, and I’m good to go for the rest of the day. Every once in a while I may eat a banana or something small just to tide me over, but for the most part, one meal a day is all I need.

[michael-morale]

Thanks Kevin. SSDI has been a lifesaver.

[michael-morale]

One of my subscribers to my YouTube channel posted the following comment: It is great you are seeing a pulmonologist. Anyone with MD should see a pulmonologist regularly. You should ask your doctor about breathing treatments. I take Acetylcystene and Albuterol and it has done wonders for my health. Albuterol will open everything up, and the Acetylcystene will thin out the thick mucus, which will make it easier to get it up.

I’m curious as to how many people reading this post use Acetylcystene and Albuterol if they are doing these kinds of breathing treatments? If you are using these two drugs, how quickly can you tell a difference after you finish your breathing treatment?

[michael-morale]

I know I said that I was thinking about changing my appointment due to the bad weather that we are supposed to get next week, but after careful consideration, I decided that I’m going to make this appointment come hell or high water. It took me a month and 1/2 to get the appointment with this doctor, so I’m afraid if I try to change it now, it may be next year before he can see me.

Like they always say, no time like the present. Besides, if I get wet, I’m not going to melt even though I know I am made of sugar. (QUIT LAUGHING)

[michael-morale]

Hey DeAnn, I too can sympathize with you regarding finding a good physical therapist. I just happened to be extremely lucky when I found Laura. She was very comfortable in dealing with me because her sister is a quadriplegic. Many years ago, her sister was in a car wreck, and Laura worked with her for many years at home which is one of the reasons why she became a physical therapist.

The best thing to do is to interview physical therapists and let them know a little bit of information about SMA. I found that many therapists who do not want to work with you are probably able to work with you, they’re just not sure how to handle you with your SMA. You need to inform them that it’s a neuromuscular disease and that physical therapy will now help you sustain the muscle that you already have and could possibly help you make these muscles stronger. You basically have to give them the rundown on what SMA is so that they feel comfortable. I think once you find a physical therapist that feels comfortable dealing with the SMA, they’ll probably turn out to be a great therapist for you. Hope this helps.

[michael-morale]

Regarding my Spinraza injections, I have completed all of my loading doses and I go back in during the month of November for my third maintenance dose. It doesn’t seem that it’s been over a year since I began my Spinraza journey, so I’m excited that I’m finishing up my first full year of maintenance dose injections.

[michael-morale]

My schedule next week is extremely busy, and one of my appointments is to go see a pulmonologist for the first time. While at the Cure SMA annual conference in June, I went to one of their classes and the topic of finding a pulmonologist was a topic of discussion. Since I’ve never seen one, I thought it would be best to go ahead and make an appointment. The pulmonologist that I’m going to see is located at UT Southwestern Medical Center, the same place that I get my Spinraza injections. One of the things that I’m going to discuss with the pulmonologist is getting a cough assist machine. I’m sure that he will prescribe one for me, and by listening to what you guys have said in the past, a cough assist machine may be exactly what I need to avoid getting another case of pneumonia which I had about a month ago.

[michael-morale]

While most “able bodied” people hate physical therapy, have you noticed how those of us with SMA love it? Good luck in your PT today, and enjoy it.

[michael-morale]

Hey Kevin, thanks for the comments. Laura’s PTA (Physical Therapy Assistant) will be massaging my calves next week with deep tissue massage. It’ll be painful, but we’re hoping to loosen these muscles. As much as I’m dreading it, I’m looking forward to it. (STRANGE)…

[michael-morale]

I’m hoping they pass on their own. Yeah, I’m excited about being back in my workout schedule. I feel so much better after my workout, and going 4 weeks without them was a bummer.

[michael-morale]

Extremely well said Kevin. I never got a chance to work with Serena, but everything I’ve heard about her is so inspirational.

[michael-morale]

DeAnn – I’m about to start the process of trying to get a new wheelchair, so I’m sure I’ll experience a ton of it.

[michael-morale]

Hey Kevin – I was under the same situation. When I started my disability, after 2 years on permanent disability, everyone becomes eligible for Medicare.

[michael-morale]

Hi Angel – I think you’re well spoken and have a great idea as to who you are. Everyone is different, but the feelings you spoke about are feelings we have as SMA patients. Relationships are tough, especially if you have SMA. I myself am still single. I’m not actively looking, but if and when the right person comes along, fantastic.

[michael-morale]

Most people say that you can eat a banana to get some potassium, but what a lot of people don’t realize is that an avocado has just as much potassium as a banana, if not more. When I was in the hospital with pneumonia a few weeks ago, my potassium was low. They gave me this bitter tasting drink that was supposed to improve the potassium level. I really think the only thing you did was to check my gag reflexes. Either way, look up foods on the Internet that are high in potassium because not everybody loves bananas like I do.

 

My physical therapist put me on a high-protein diet when I started with her in October of last year. I try to eat more chicken and fish because of the protein levels and I also drink a protein shake every day. Since I’m working out and trying to build more muscle, protein is essential and it should be part of everyone’s diet if they’re trying to build new muscle like I am. Protein is also essential because it helps rebuild muscle that you are tearing down during your workout. The only problem with protein is that it can also cause the person to get kidney stones, which is definitely been a problem of mind throughout my life. When I was in the hospital with pneumonia, they told me that I still have three kidney stones that they were unable to retrieve over a year ago when they blasted one of the kidney stones out of me. I know that I have a future date with either a surgeon to remove the kidney stone or a date where I’m going to give birth to another kidney stone the natural way. Either way if year’s screaming coming from the Texas area, it’ll probably be me.

[michael-morale]

Here’s something I’ve never understood. We hear about all these tests that we are supposed to go through while receiving our injections. The only test that I’ve been through was about six months ago when I went to see my neurologist. She did a grip strength test and she also tested my range of motion with regards to my arms, neck and shoulders, and in my legs. All of the other assessments have been done from my physical therapist every four weeks when she reevaluates me. There’s really not a scale that we use in measuring some of my muscle improvements, so I question some of these tests because there doesn’t seem to be a standard test that we must all go through. I know that my physical therapist can measure certain parts of my reevaluation with regards to muscle tone and strength, but core strength and other muscles such as my back and my neck are subjective tests that she does. Either way, I know I’m getting stronger by the way that I feel because I don’t have to have as much assistance when going down a steep hill in my balance is much better in my wheelchair than it used to be.

[michael-morale]

Like Kevin, I only have to travel about 10 miles to get my Spinraza injections. Many of the subscribers to my personal YouTube channel tell me that they have to travel over 100 miles each way to get their injections. One of my subscribers comes in with her family the night before and stays at a hotel. She gets up in the morning, goes into UT Southwestern Medical Center in Dallas Texas, and gets her injection and then they travel home after she’s had time to rest. This was a major concern for a lot of people when Biogen introduced their treatment. Injection sites were few and far between when they got started, but over the course of time, injection sites have popped up throughout the country giving people more options. I have heard that the average travel time for many of these individuals can be up to two or three hours each way, so if you have an injection site that is close to your house, count your blessings.

[michael-morale]

Gees, I thought I was busy. Glad you’re seeing a difference in you muscle strength and energy since starting physical therapy. I love PT because it really does help.

[michael-morale]

Thanks DeAnn. I would much rather have surgery myself, but they may not give me an option.

[michael-morale]

Kidney stones are the male version of birth.

[michael-morale]

Here’s something that I never understood. When I was working full time for ExxonMobil, I would go to work at 6 o’clock in the morning and get off at 3 o’clock in the afternoon. I would then go home, take off the shirt and tie, put on a collared shirt and go teach my college course from 5:30 in the afternoon until 10 o’clock at night. When I was getting my MBA, I would teach on Tuesday and Thursdays, then I would go to school to finish my MBA on Mondays and Wednesdays. Even with all of this activity, I still had time to get a lot of the things done that I wanted to get done during the week.

Now that I’m on permanent disability, and have quite a bit of free time on my hands, I cannot find enough time to get everything done that needs to get done. Even though I have a full-time job, there’s still not enough hours in the day for me to get everything done that I want to. Can somebody please explain where all my time went?

[michael-morale]

Happy early birthday you youngster. I just turned 53, so hang in there buddy, it only gets better.

[michael-morale]

It’s been about five years since I received my wheelchair. I think I’m going to call my wheelchair company that I use to ask them about the status of me getting a new chair. The one that they got me last time sucks and is not going to work at all, so I’m going to go with a different kind of chair, probably similar to the ones that I saw while at the SMA conference in Dallas. Those chairs looked really nice and comfortable. Thanks for jogging my memory about this. I need to make a few phone calls this coming week.

[michael-morale]

To be perfectly honest with you, until the 2018 Annual Cure SMA Conference, I’d never heard anything about a cough vest or cough assist machine. While I was at the conference, I decided that I needed to look into these two devices to see if they would benefit me. Unfortunately, I didn’t do it in time, but now that I’m getting better from my pneumonia, I can focus on getting these two pieces of equipment to help me in the future. I can see the benefit of the cough vest, but the cough assist is probably going to give me better results. My insurance has already approved the vest, and I have an appointment with my pulmonologist on October 16. When I go to see my pulmonologist, I will discuss the cough assist to see if he will prescribe it as a medically necessary device, which should help my insurance cover the cost.