Showing posts with label pneumonia. Show all posts
Showing posts with label pneumonia. Show all posts

Friday, March 9, 2018

Not Everything is Predictable

Those of us living with Kennedy's Disease often like to compare symptoms, CAG Repeats, age of onset, and progression. I believe we do this to feel either better or perhaps worse about ourselves. Unfortunately, not everything is predictable about this gene defect. Allow me to give some examples.

Age of Onset: This could be anywhere from the teens to the 60s. Most often symptoms begin to appear in the 30s and 40s.

CAG Repeats: The number of repeats can be anywhere from the low 40s to the 60s. 34-39 is considered "borderline" and the person might only experience mild symptoms. Researchers now believe the higher the Repeats, the earlier the onset.

Progression and Severity: The earlier the onset, the greater the progression (more severe the condition). This is just a time factor. If onset begins in the 50s for one person and the 30s for another, the 30s person will have experienced 20 years of progression before the 50s person even experiences symptoms.

Symptoms: You would tend to believe that symptoms would be something you could count on, but that is not true either. There is a long list of potential symptoms, but not everyone has the same symptoms, nor do the symptoms appear at the same time in the progression of the disease. Go figure!

What else do we know about the disease?

Pneumonia: This is something that is not kind to us. Almost every doctor encourages us to have the pneumonia vaccination and the booster at age 65. They also recommend the Pneumococcal vaccine today. The flu is something we should also be concerned about because many times it can result in pneumonia. Once again, doctors encourage that you have an annual flu shot.

Exercise: Neurologists have not determined the true value of exercise for those of us with the defect. There is a consensus, however, that exercise if important to our wellbeing. The reason could be as simple as the benefits of endorphins and adrenaline to our general mental, emotional and physical health. Several doctors believe that it is important to continue to stimulate the motor neurons and muscles to keep them healthy as long as possible. And, “muscle memory” is very effective in helping to keep you mobile and upright. Everyone does agree that over-exercising does more harm than good. I can attest to that.

There is also the feeling that exercise and stretching helps "cell inhibition." Cell inhibition is what happens when an activity, such as an exercise, temporarily blocks an unpleasant sensation like a chronic pain. The nerve transmits the pain signal to a cell in the spinal cord that is inhibited by the new "traffic" caused by the stimulus (exercise routine). It is why pinching the cheek blocks the pain from the anesthesia needle in dentistry. Exercise and stretching (working the muscles and joints) produces stimuli for the spinal cord and brain (central nervous system), which is one reason we feel better when we move.

Sedentary Concerns: As the disease progresses, most of us with the defect become less active. We tend to spend more time sitting and do not work our metabolic system. For many of us, "couch potato" is a good phrase that exemplifies our lifestyle as the disease progresses. Weight gain and potential health complications because of the weight, as well as the additional strain on our existing weaker muscles, are always a concern.

Not Everything is KD Related:
Just because we have Kennedy's Disease does not mean we are immune to other ailments and health issues. Diabetes, heart and lung disease, kidney failure, as well as many other health concerns are always a possibility as the body ages and based upon hereditary issues.

Continue seeing your regular doctor:
 Regular physicals and doctor's visits are important for your general health and wellbeing. One man, for example, complained for months about chest pains. He blamed them on Kennedy's Disease and felt he could not do anything about them. The pain finally became severe enough that he saw his doctor. Doctors diagnosed him with having blockage in his arteries.


Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip.

Friday, January 12, 2018

They let me down this year

If you follow my blog, you know I am a proponent of the flu shot. I believe it has helped me through the years along with the pneumonia vaccine. The flu can take a toll on anyone and especially so for the young, elderly, and those living with a progressive neurolomuscular disorder.

Well, the manufacturers let me down this year. When I had the shot this October, I felt somewhat safe. As October moved into November, reports surfaced that the current vaccine was only 43% effective. November rolls into December and now numbers in the 20s began to surface. This week, 10% was thrown out there. Health officials mentioned the current flu is mutating and that is why people are coming down with it more than once.

For the last couple of weeks I have been slowly recovering from the crud—whatever you want to call it. Every time I believe I am 90 or 95% recovered, I have a setback. Today, I feel close to 100%. The best part about it is my leg strength has been pretty good to good these last few days.

I tend to become concerned after a period of weakness. However, I have also found that if I continue to exercise as best as I can and not give up hope, I seem to bounce back pretty well. And, boy does it feel good when ‘I’m back’.

During the flu season, I rely upon what my mother always told me. “Wash your hands often and keep your hands away from your eyes.” I know the advice isn’t perfect, but it will go a long way in helping to keep you healthy.

We have several months left in the current flu season. So, be smart, be careful, and wash your hands. J It won’t be long before I again remind you to get your flu shot for 2018. Let’s just hope they do a better job this next time.

Wednesday, January 4, 2017

Respiratory Issue with SBMA

SMA News Today published an article on respiratory issues with patients with Kennedy's Disease. A portion of the article as well as a link to the full article and actual study results are shown below. Most of us are aware of this issue; especially the implications of pneumonia and KD.




SBMA Patients Prone to Develop Respiratory Problems Due to Reduced Muscle Strength, Study Says


Patients with spinal and bulbar muscular atrophy (SBMA) may be at risk of developing respiratory complications due to a decline in the levels of genes responsible for muscle strength, according to a new study. The authors assert that monitoring the breathing decline in these patients may help provide better clinical management of the disease.

The study, “Decreased Peak Expiratory Flow Associated With Muscle Fiber-Type Switching In Spinal And Bulbar Muscular Atrophy,” was published in the journal PLoS One.

At more advanced stages of the disease, SBMA patients may develop dysphagia (difficulties in swallowing) and dyspnea (shortness of breath), as well as pneumonia and respiratory failure. Thus, the management of swallowing and respiratory function is indispensable for the long-term care of these patients.

However, respiratory difficulties associated with SBMA are not well characterized, which limits the knowledge of how these processes occur in patients and how they might be managed.

The objective of the study was to evaluate respiratory function of SBMA patients and identify the mechanisms underlying this condition, in comparison to patients with amyotrophic lateral sclerosis (ALS), another motor neuron disease in which dyspnea has been observed and well-studied.

The study included 40 SBMA and 25 ALS male patients, as well as 15 healthy individuals, in whom researchers evaluated respiratory function (by assessing the peak expiratory flow, %PEF, a measure of breathing capacity, and the forced vital capacity, FVC), ....

Thursday, January 10, 2013

One of the 40%

The CDC commented that 40% of those who had the flu shot this year will still get the flu.

fluYup, I had my flu shot and I still got the flu. And, just as I always warned, those of us living with Kennedy's Disease have to be extra careful when it comes to the flu.

It is day eleven and I feel between 80-to-90% well. I still have the cough, but not quite as bad. The fever and aches are gone. Day two and three were the worst … just plain miserable. I ended up sleeping most of the day (between coughs anyway). I have been extra cautious since coming down with it and very mindful of the seriousness of this health issue should it turn into pneumonia.

The weakness is still there, but I am improving every day. I have exercised for 50-to-75 minutes the last five days and that seems to help (as well as raise my spirits). I have always said ‘patience is a virtue’. It is also an attribute that I need to develop further. Having the flu this year has been a test for me.

I still highly recommend the flu shot and the pneumonia vaccine when you turn 65. I still believe we have to be extra careful this time of year. I was at the doctor’s office once a week for eight weeks having my blood tested (INR). If I hadn’t been exposing myself weekly I would probably have been safe.

The only real benefit to having the flu this time of year is all the collegefootball-bowls bowl games. I never felt guilty sitting around and watching every game even though I often fell asleep halfway through some of them.



Tuesday, October 9, 2012

It is Flu Season!

As almost everyone knows that is living with Kennedy’s Disease, the flu can be devastating because of our inability to clear the lungs and the strength to work through the condition. I lost a brother that also had Kennedy’s Disease to pneumonia. Over the last three years I have published several articles on the subject and always recommend the annual flu shot (and a pneumonia shot if you haven’t already had one).

The Full-Time Nanny blog has some great articles on a variety of subjects. The article below has a variety of links to flu information. There is a lot of information that I didn’t know. Take a look when you have a chance.
 
If you read no other article, read this one Influenza and Children With Neurologic Disorders . Yes, we are far from being children, but we do have a neurological disorder. The one sentence that caught my attention almost immediately: “It has long been known that people of any age with a neurologic condition are more likely to suffer severe consequences from a respiratory disease.”

Also, Dr. Paul Taylor, a member of the KDA's Scientific Review Team, wrote an article that will be of interest to parents.  The title is, "How to choose between the flu-mist and the flu shot for your children."
 
So, the question for today is: Have you had your flu shot?
 
_____________________________
 

30 Blogs with Good Information on the Seasonal Flu

Posted on October 7, 2012 by admin | in Nanny
clip_image001As the weather begins to cool and the days start to get shorter, parents’ minds generally turn towards the upcoming flu season and the best ways to prevent illness in their household. Unfortunately, there are so many misconceptions surrounding the transmission, incubation period, best course of treatment and even vaccinations that figuring out the best course of action can be a challenge. These 30 blog entries offer information on several aspects of the seasonal flu.

What is Influenza?
The first step in treating flu symptoms or preventing them altogether is to understand what influenza is, how it’s transmitted, and what signs or symptoms typically accompany an infection. These five blog posts are all dedicated to explaining what flu is, helping readers to better understand it.
Treatment for Flu?
While there is currently no cure for influenza, there are treatments that can help to alleviate some of the symptoms. In these blog posts, various methods of minimizing your suffering during a bout with the flu are discussed.
Contagion and Incubation Periods for Flu
Understanding how to prevent the spread of flu between family members requires a basic knowledge of incubation periods and how long an infected person can transmit the flu virus to others. In the interest of providing this essential information, these bloggers attempt to clarify facts and dispel rumors surrounding influenza contagion.
Flu Vaccine Information
Though a seasonal flu shot is strongly recommended for certain groups of people, there’s quite a bit of controversy surrounding the vaccine. Information about flu vaccines is varied and often inaccurate, making it difficult for many people to determine whether or not receiving a flu shot is the right choice for them and their family members.
Preventing the Flu without Vaccination
If you’re among the people that vaccination against influenza is not recommended for, or have simply chosen not to receive a flu shot, there are still steps you can take to reduce your chances of contracting the flu virus. These five bloggers offer advice for minimizing your flu risk and helping to prevent the spread of influenza in your household.
Influenza and Possible Complications
While it often seems strange to think that people still die from what is often regarded as a minor, albeit miserable, illness, the fact is that complications from influenza do cause a significant number of deaths around the country each year. In fact, the Centers for Disease Control and Prevention estimates 36,000 people will die from influenza and resulting complications. These five blog entries discuss possible complications, providing valuable information to those that may not realize just how serious the flu can be.