Thursday, January 25, 2018

Kennedy's Disease - Beyond Motor Neurons

The link below opens a recent study published in the Journal of Neurology, Neurosurgery & Psychiatry. It explains SBMA (Kennedy’s Disease) very well. The report is not just focused on the motor neurons. It goes into detail explaining other aspects of the condition and other potential opportunities for a treatment.

Beyondmotor neurons: expanding the clinical spectrum in Kennedy’s disease

Raquel Manzano, Gianni Sorarú, Christopher Grunseich, Pietro Fratta, Emanuela Zuccaro, Maria Pennuto, Carlo Rinaldi

“…Compared with other motor neuron diseases, such as amyotrophic lateral sclerosis (ALS), disease progression is relatively slow, with muscle strength declining by 2% per year. Recent evidence has shown that the muscle atrophy in SBMA is not solely secondary to the motor neuron degeneration but also consequence of a primary myopathic process. In addition, SBMA is frequently complicated by other signs and symptoms such as gynaecomastia, impotence, testicular atrophy and metabolic changes, suggesting a multisystem involvement in the disease. These features frequently manifest early in the disease course and can contribute substantially to the morbidity. In this review, we discuss the non-motor neuron abnormalities underlining SBMA symptomatology. We propose that an improved understanding of these features not only could result in better management of the patients SBMA, but also has the potential to shed new light into the disease pathogenesis, lead to the discovery of biomarkers for disease progression and open new treatment avenues. …”

“… Motor neurons are particularly sensitive to alterations in the proteostasis network, likely due to their extreme polarisation and post-mitotic nature. On the other side, alterations of protein quality control in muscle, by tilting the balance towards increased protein degradation, are likely the underlying cause of the muscle atrophy observed in this disease. …”

I feel this information should be shared with your primary care doctors. It might help explain other symptoms not normally associated with Kennedy’s Disease.

Wednesday, January 24, 2018

Another Story of Living with KD

This is a good story to share with those of us living with Kennedy's Disease. The key is to remember you are not alone.

Parker helps others diagnosed with Kennedy’s Disease

Physics teacher diagnosed with disease in 2006

“After being diagnosed with Kennedy’s Disease in 2006, physics teacher Jameson Parker has not let the condition define him as he continues to help others who have been diagnosed. ...

“Everybody has their difficulties. Some are more visible than others, like mine is a very visible difficulty but I recognize now that everybody has things they struggle with and everybody needs to learn to persevere or to endure through their difficulties.” ...

To read the rest of the article, follow this link: Jameson Parker

Tuesday, January 16, 2018

Follow up on an Experiment

My September 17 article, Unexpected Benefit, explained the results of my experiment of daily foot massages.

“For several years, the bottoms of my feet and toes have been numb or tingly. I tried different techniques to stimulate the nerves, but nothing seemed to work. In early August, the feet were particularly bad. One evening, I used my hands to massage my feet. The feet were more sensitive than I thought they would be when I performed a deep tissue massage. At times, it was slightly painful. Yet, they felt better afterward.”

Modern Reflexology reported the follows signs and symptoms of peripheral neuropathy:

  • Gradual onset of numbness and prickling or tingling in your feet or hands, which can even spread to the entire length of your legs and feet.
  • Sharp shooting, jabbing, throbbing, freezing or burning pain
  • Unable to control movements.
  • Touch sensitivity that sometimes reaches extreme levels.
  • Weakness of muscles or paralysis if motor nerves are affected.

It has been five months since I started the daily massages. It only takes 5-10 minutes. My feet no longer tingle and are not numb. I can feel all my toes and they have better movement. When I massage the feet, it is no longer painful. It is actually enjoyable. I also notice that my feet do not feel as cold. That would make sense since the massage should be stimulating the circulation. It is nice to be able to feel the bottom of my feet and toes. It makes standing easier.

I still experience an occasional numbness in my right pinky finger, but it is not constant. However, my finger strength has improved with the daily routine.

Has anyone else tried this? What is your experience and results?

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.

Monday, January 1, 2018

I wish ... I pray ... and I hope ...

I wish ... I pray ... and I hope ... 

this will be the year researchers find
a treatment or cure for Kennedy's Disease

Wishing you a safe, healthy and happy 2018 filled with love