Friday, July 30, 2010

Dad's Diagnosis 3: Essential Tremor

A while back I wrote a post about my Dad and some struggles he has had with some leg, hand, and arm shaking.  It is an interesting story and one I am looking for some possible guidance on for him.  First the history.
 
The shakes began around 2-3 years ago.  It started relatively small, but had gradually gotten a bit more noticable.  Due to this and some other reasons he had given up golf eventhough most would sell their soul for his low single digit handicap(without playing he could probably break 80 at will).  His first doctor's visit on the subject led to a diagnosis that he had "Benign Fasiculation Syndrome" or BFS.  As it was labeled benign he essentailly just lived with it.
 
About a year later he visited another doctor to get a second opinion.  This time the neurologist, after 10 minutes(!) of observation and a quick discussion, had a diagnosis of Parkinson's Disease(or PD).  This was obviously unsettling and he tried the medication that was perscribed but dropped it shortly after due to side effects that weren't worth it.
 
The symptoms have stayed about the same lately, or possibly they have gotten better.  It is hard to tell for both him and his family since it is difficult to tell whether he is just getting more annoyed and suspecting it is getting worse or if we are getting used it it more so it seems like it has gotten better!  No hard data to work with, just feelings really.  After a discussion with my wife(a registered nurse) he decided to get a third opinion.  This neurologist spent almost an hour with him observing him and going into a extensive discussion of his symptoms.  His opinion was that what he has is "Essential Tremor"(or ET) not PD.  The reasoning, while not totally solid, is that he shows no symptoms that are classic and very common PD symptoms and has some things that are not indicitive of PD at all.  For example, if he has a drink or two(self medication!) the shakes subside.  In PD this is not supposed to happen.  He also has no visible walking gate effects and his speech affected in any way, which are apparently very common in PD patients.
 
So now 3 different doctors and 3 different diagnoses.  To me this shows how complex all this is.  It also potentially shows the vast difference in quality from doctor to doctor.  Getting cut and dry answers for something as complex as the human animal/machine is at times tricky, messy and unclear. My guess is that the lines between ET, PD, and BFS aren't clearly defined.  I would guess that there is also some overlap in symptoms that muddy the waters some.
 
He is going to try and take a drug that has proven effective for Restless Leg Syndrome(or RLS) called Requip.  According to the doctor it has a long track record of clinical use so their is some level of confidence that the long term effects won't be too bad.  The actual track record is a little over 10 years, which to me isn't that long to have any high confidence.
 
My Dad and I are very similar in that we prefer to avoid any medicines for things other than acute situations.  Since going Paleo around 2 years ago he is a very young looking and acting dude in his upper 60s.  Golf has been replaced by surfing the waters of Florida whenever the waves are agreeable.  I am very keen on finding something dietary or alternative for him to try. 
  • Does anyone know of anything that may help with ET?  Other neuological issues like epilepsy have been controlled or cured with ketogenic diets, but I am not sure if that is something worth trying. 
  • Is it possible that some of this is autoimmune related?  If so, are their some foods to definitely avoid?  Going even more extreme by dropping all dairy, legumes(they enjoy their beans a few times a week) and possibly even nightshades would be a possibility if there is some indication that it is autoimmune related.
  • Is there any suggestion of exercise methods?  I had seen something online that strengthening the muscles may alleviate some of the shaking.  He is currently doing push ups, curls, sit ups and walking with sprints a few times a week.  He is hesitant to step up the weights since it seems to exacerbate the shakes for a period of time immediately after training.  If there is some strong indication I would push for him to do some serious strength training. 
  • Anyone know someone taking Requip?  Any sense for effectiveness and side effects worth passing on?
  • Last and least...any other medications worth considering?
Any links to studies or general thoughts would be greatly appreciated.  Not looking for any medical advice over the interwebs.  Just looking for leads to allow me to dig further with some efficiency.
 

2 comments:

IETF said...

The International Essential Tremor Foundation might be able to help. We are a non-profit foundation that provides educational information, services and support to those affected with ET all over the world. Please take a look at our website, essentialtremor.org, where you will find all kinds of helpful information from coping skills to finding a Dr. that specializes in ET. I hope you find it helpful.

Let us know what else we can do for you and your Dad.

TexasPrimalSurfWahine said...

I have no claim to any expertise on this topic but have you considered the SCD (Specific Carbohydrate Diet) diet? It is pretty well primal and is used for autistic kids, CF, celiacs, etc. Two links for this are: http://www.breakingtheviciouscycle.info/beginners_guide/beginners.htm
and
http://www.pecanbread.com/.
I hope you find help for your Dad and hope he keeps on surfing!