1.27.2012

Are You There, Brain? It's Me, Alessandro.

Alessandro's brain from his July 2010 MRI


Alessandro had his 3 month checkup with the neurologist yesterday.  Would you guys like an update?  Mmmk....

Symptoms

He had no new serious symptoms to report and no real changes in his regular symptoms (i.e., twitching, spasticity, lack of sleep, numbness).  But, he did report that he experienced lightheadedness a couple of times about a month ago, which could have been due to one of his meds, but also could have been due to his lack of drinking water or eating properly.  He also reported that he has noticed his hands shaking a bit more than usual.  The doc said that she's noticed slight shaking with him in the past, and that if it seems to him to be a problem, then he could try wearing a small weight on his wrist.  Al didn't feel it was an issue, so we'll wait on the weight.  

Strength & Speed 

During each doctor visit, his strength is tested by the doctor, who pushes down and pulls on his limbs, and measures his ability to resist her push or pull.  Last visit, Alessandro was able to completely resist her pushing down on his right knee.  This time, he showed little to no ability to resist her push, which meant that his strength in his right hip has decreased drastically since his last visit in September.  He remained at about the same strength level as last time in other areas. 

The doc also measures his walking speed each visit.  He walks from point A to point B down a small stretch of hallway, and his time the last couple of visits has been in the 9 second range.  This time, it took him a bit longer to walk the same distance, about 11 seconds there and 10.3 seconds back.


Physical Therapy 

The doc was disappointed that Aless's last round of physical therapy didn't prove to be useful, meaning that he didn't come away from it feeling stronger.  But, he did learn a few exercises that he can easily do at home, which will help strengthen his core and in turn help his balance and strength.  His doctor stressed the importance of exercise to Alessandro and told him that he needs to find a way to do it regularly!  She recommended we find an indoor pool for him as she thinks it would greatly help strengthen his hip.

Gilenya Update 

His doc gave us a couple of updates about Gilenya, which is the oral medication that he is taking right now as his MS treatment.  It is the first FDA approved oral medicine for MS treatment, and he was happy to try it out after giving himself injections for the several years prior.  He has been on Gilenya for 9 months.  The doc said there are currently 30,000 people in the US taking Gilenya, and there has been one reported death.  However, in Europe, there have been 11 reported deaths, which was alarming to her.  At a recent meeting with the drug company, she was  informed that the circumstances surrounding the deaths of the 11 Europeans do not seem to be directly related to their Gilenya usage, but that final reports are still pending.  As of now, she did not find it necessary to take him, or any of her other patients, off of Gilenya.  But the doc and her colleagues are working very closely with the drug company to keep a close eye on these developments. 

Overall, his doc was happy that he hasn't had any major setbacks in this past year.  It has been the first year without any need for steroid treatments, and that is a big deal!  Woot, woot!

His next MRI is scheduled in a couple of weeks and the docs will review the scans to see if he has any new lesions or activity going on in that noggin of his.

So what does all of this mean for us?  

My post-doctor visit to do list: 
  1. Find a convenient and inexpensive indoor pool.
  2. Once we find a pool, make Alessandro use it regularly.  (4 days a week).
  3. Make Alessandro do his floor exercises regularly.  (4 days a week).
    • One way that I plan on getting Alessandro to exercise regularly is to make him eat and drink properly.  He tends to eat no breakfast, a lunch at about 2pm and then is starving by the time he gets home from work at around 6pm.  This means that he wants to eat dinner before exercising, which then means that after he eats dinner he's too stuffed/comfortable to be bothered with exercise.  So, my thought is that if I can get him to eat breakfast daily, a small pre-lunch snack, lunch, and then a snack at about 4pm, he will have energy throughout the day, and will have enough energy when he gets home to exercise before needing dinner. 
Alessandro's post-doctor visit to do list: 
  1. Swim regularly. 
  2. Do floor exercises regularly. 
  3. Eat and drink like a normal person.  (3 small meals with snacks in between + water, water, water).
Questions for you:
  1. Does anyone know where I can find an indoor pool in the area (besides the YMCA)?  
  2. For you people out there that exercise regularly, do you find it easier to exercise in the mornings or after work?  Do you find that it helps to exercise an hour or two after eating a meal or a snack?  Or not really?
  3. Any other tips/advice/suggestions for us?

Up Next:  Stay tuned for an upcoming "Fitness With Alessandro" segment.  I already have the pics and the videos people!  Here's a sneak peek. 



Wow.  

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