Saturday, June 27, 2015

Do no harm!

Recovery takes patience. And, I believe I have mentioned several times over the years that patience is a virtue I do not possess. The broken metatarsal and sprain are now the most painful injury. The ligaments in the left hyperflexed knee are still sore, but manageable. I am thankful for the Toradol injection (NSAID). It is a wonder drug on my opinion because it worked wonders on me. If it wasn’t for that, I can’t imagine what the recovery process would have been like.

I miss performing my standing leg exercises every morning. Yet, I know the healing process takes time. I haven’t slowed on my upper body exercises and I continue to do most of my sitting leg exercises. This provides a certain level of satisfaction. On Wednesday I began performing side-to-side weight shifts every couple of hours. I do 24-36 shifts at a time. It is nothing like my step- in-place exercises or standing leg lifts, but it is a start. If it weren’t for the metatarsal damage, I believe I could do the step-in-place exercises. Did I mention patience somewhere in the paragraph above?

My latest affirmation is, “Do no harm.” Reminding myself of this every few hours helps, especially when I want to try something crazy (dumb).

Tuesday, June 23, 2015

Free Falling

This song came to mind last night as I was sitting in the Emergency Room waiting to see a doctor. It had already been a long day.

I was stepping out of the shower, and even with my wife’s help, when both knees buckled and I collapsed (went straight down – not forward or back). My feet and legs were caught underneath me.
I kept on saying repeatedly, “Please, let nothing be broken.”

I couldn’t stand up, so we had to enlist the help of a neighbor to lift me into my wheelchair. I was sore, but didn’t notice any pain except for my two small left toes. When I tried to stand, however, PAIN! I’ve heard the word ‘crippling pain’ used before, and now I have a better idea what that feels like.

Over the last 30+ years, I broke my tibia, fibula, ankle, and toes several times while living with Kennedy’s Disease. Even the worst pain from these fractures couldn’t hold a candle to this pain. At one point in my attempt, I almost passed out. On the pain chart, I would give it a solid 8, perhaps even a 9. My left leg was worse than the right, but both were bad.

After several attempts, I realized we needed to see a doctor. It was now dinnertime and everything was closed. So, off to the Emergency Room at the hospital. Fortunately, the doctor knew about Kennedy's Disease and this made the visit and diagnosis easier.

  • Diagnosis: Both knees had hyperflexed (Hyperflexion) and the left one was worse. Plus one broken toe and a sprained foot.
  • Treatment: A non-steroidal injection (worked very fast) and some pain pills (Which I haven’t’t taken yet).
  • Prognosis:  2-4 weeks to recover (most likely case). No exercises for several days and then only very light ones where I do not put excess pressure on the knees. Physical therapy might be needed.

Today: Yesterday, I went free falling and today I am cautiously optimistic and more stable. Much less pain (3 or 4 on the scale) and it is manageable.  Broken toes still hurt, however, but you really can’t treat them. I have transferred four times this morning and it is acceptable and manageable.

A special thanks to my wife, neighbors and family for their help, thoughts and prayers. They were needed and still are.

Thursday, June 18, 2015

A randomized controlled trial of exercise in spinal and bulbar muscular atrophy


The trial to determine if exercise has any beneficial or harmful effect for those of us with Kennedy’s Disease was published in Annals of Clinical and Translational Neurology.

Objective: To determine the safety and efficacy of a home-based functional exercise program in spinal and bulbar muscular atrophy (SBMA).

Kenneth Fischbeck, MD, Christopher Grunseich, MD, and Angela Kokkinis, BSN, RN of the National Institutes of Health (NIH) added the following comments to the report:

“The trial did not show a statistically significant change in the primary outcome measure, the AMAT, overall.  However, a subgroup analysis done after the study did indicate that low-functioning men with SBMA may respond better to functional exercise. We also found that functional exercise is safe and well tolerated.”


Wednesday, June 17, 2015

YouTube Video on SBMA

I cam across this YouTube video today. I found it interesting the way it was put together.

The first three minutes of the eight minute video are about Kennedy's Disease. I couldn't read some of the information before the screen changed, so I had to Pause the video to read everything.

Sunday, June 14, 2015

Personal Stories tell the real story

Below is another story of a family living with Kennedy's Disease and their efforts to help find a cure for this condition. The non-profit they formed is in Great Britain. 

Starting up a non-profit is never easy. Susanne and Terry Waite started the Kennedy's Disease Association (KDA) fifteen years ago. They sacrificed a lot to make it happen and even more to grow the KDA into what it is today. 

I applaud the efforts of Ms. Hopps and her team and wish them the best as they move forward with KD-UK. Their website is:  

“Monday 8 June 2015
A NEW national charity aimed at tackling a rare neuromuscular disorder has been launched by a Dorset woman.

Kate Hopps (right) with her sister, Louse
When Kate Hopps, 43 of Martinstown, found out her husband of 21 years Frank had Kennedy’s Disease, her world was turned upside down. 

Kennedy's Disease (KD) is described as an inherited motor neuron disease that affects men. There is no cure for the disease and no current treatment. 

Kate said: “It's very scary when you're told that your husband has this disease because so few people know about it.”