Parkinson’s Disease

Many people ask Him, and me, about the first signs and symptoms of Parkinson’s Disease.  When did we notice something different? and what did we experience?  Actually the spouse is often the first one to notice the changes.  So this is where I will begin, but now it is 11:00 p.m. and I need to be at work early early tomorrow morning so I will leave it now that this is where I will begin next time.  Probably be next weekend. 

‘lu

April 28, 2011…

I first noticed changes in Him with regard to his sleep patterns. He started tossing and turning in bed and couldn’t get comfortable.  His movement would keep me awake. 

He started hitting me between the shoulders in the middle of the night. Sometimes crying out or yelling something before the blow.  I would wakeup “why did you do that?”  he would wake up and not know what I was talking about.  He had been dreaming about reaching out to catch a ball that was hit all the way to the outfield, and apparently hit me as his arm reached down to catch the ball, and the yell was his exclamation of the force and strain of  effort to make the catch and the concomitant sound of pleasure of accomplishment as he caught it.   Or he would be reaching to pick up something or waving his arms at friend… Acting out dreams is a sign of PD.   Visible rapid-eye movement is another.  That may not be the medical way of expressing this, but  I would look at him asleep and watch his eyeballs moving back and forth, side to side, rapidly under his lids.  Living..seeing.. his dreams while asleep. Vivid dreams. 

Also his facial expressions changed.  I thought perhaps it was stress.  A flat facial expression is  a sign of PD.  Actually his first MRI showed signs of small stroke activity not even enough to be diagnosed a TIA, but a blip of stroke-ish-ness something.  Subsequent MRIs, and I believe he has had two more on his head since the initial one all those years ago, have shown nothing of the blip or anything of a blipish sort.

His facial expression got a little better with the meds, but still not the same as before the PD.  Oh, this brings up another question…What test do “they” use to diagnose Parkinsons?  Answer:  None, no test pre-post-mortem that is. Diagnosis while alive, is made if Sinemet (or similar Dopamine enhancer prescribed for PD) seems to help the symptoms or not.  If yes…Parkinson’s Disease…if no…perhaps Parkinson’s Like or Essential Tremor, but not PD.  Apparently true Parkinson’s Disease effects a part of the brain in a way that can only be confirmed post-mortem, but experience and science has pretty much confirmed.. if the drugs help, it is PD, if not, it is not PD.  

Back to his initial symptoms.  He had a very slight left arm tremor that just kept getting worse.  He tried grip strengtheners, wore an arm wrap like for tendonitis, tried various arm exercises and three years later he finally talked to his Dr. about it.  

FYI –  We bought a Select Comfort bed – the “Sleep Number bed”, aka, Marriage saver!  It is pretty much two beds in one.    He can toss and turn and I do not feel it on my side.  He doesn’t do that much anymore, although he does struggle with Restless Leg Syndrome at times, and is in and out of bed several times during the night, but my side doesn’t even feel the movement.

The acting out of dreams (mostly) stopped soon after he started taking meds, he still had/has vivid dreams.  Vivid dreams are a side effect of several of his PD drugs.  His Neurologist and I will both attest that overall his Parkinsons symptoms, his tremor essentially (pardon the word play)  has not been too much a problem until recently..perhaps long term or too much use of the meds..he worked up until age 65 and as I have mentioned previously he has only in the last couple of years begun to fall frequently and have more trouble with stiffness and using his hands .  Read “Love~About Him and Hallelujah” for more on this.  Paradox, irony, twist of fate perhaps but like many other treatments…too much or unbalanced amounts of the cure can cause the same or worse symptoms. 

PD like any other “live-with” disease, perhaps like diabetes… requires a delicate and care-full balance of  “treatment”. 

More later.

‘lu

Note! Disclaimer…not diagnosing, or giving advice..only a  Physician can do that.  In our case, a first visit to a care-ing and care-full Family Practitioner who suggested the visit to the Neurologist.

P.S there is so much more to this story than I have so far written..stay tuned…

April 29…

Oh…one more symptom….stiffness.   The stiffness is probably the most uncomfortable symptom, I dont know how I left it out.   Now the stiffness has turned into freezing and he sometimes cant move at all…this ofcourse is made better and worse by the meds.

More – About Him and Hallelujah