"Why couldn't they give me a cool disease?" TBI and associated Parkinson's

It was a long and frustrating day for John.  Tuesday, mom carried him to Augusta while I stayed at home recovering from my hysterectomy.  After waiting about three hours to see the chief of neurology at the VA Medical Center, John had to stop by the pharmacy for a new medication and wait in a very long travel pay line.

Last summer John had an MRI and they almost immediately called him to go back for another.  They even scheduled him on a Saturday so they could get him in soon and do all the views that the doctor wanted.  We didn't hear anything back and called to no avail.  Months later, we got a copy of the radiology report during a routine request for records.  The primary care doctor didn't seem concerned that he had fatty "hotdog shaped tumors" in several places around his spine.  She did put in a referral for neurology and alas, we got a letter saying we had an appointment in about six months! Six months is a long time to wait while you are battling the concept that there are tumors over a centimeter long on your spine. 

Anyway, going back to the title of the post... I sent John and mom an email with items to address with the doctor and the resident and doctor did several standard exams and tests in the office.  They determined they would suggest another MRI with a closer view but thankfully felt that the "sausage shaped" tumors were nothing of concern.  However, the chief doctor wanted to start a new medication for John's mobility issues.

For quite sometime, John has had very frequent falls.  He has trouble moving, trouble getting up, trouble with numbness in his extremities, and difficulty holding onto things like cups, forks, bags, etc.  Often he will sort of freeze and brace himself on a wall until I can get a chair or his walker (with a seat) to help him sit down to prevent a fall.  At other times, he will ease himself to the floor when he can no longer stand.  John has had frequent falls and needs help drying off after a bath and often can't pick up his feet to adequately get dressed.  He gets dizzy and has trouble bending over with success.  John often struggles with his speech.  He stutters, has slowed speech, or has difficulty coming up with words.  He has trouble sleeping, anxiety, depression, and occasionally has mild shaking.

Tuesday when John got to the pharmacy it was plainly spelled out on his bottle to take daily "for Parkinsons."  This was shocking.  Parkinson's  disease seems so severe and relentless.  One likely thinks of the "parkinson's shuffle" or shaking in association with this disease.

We've only told a few people before this post that the doctors were now treating John for Parkinson's.  We've got all sorts of reactions.

"But Amanda, John doesn't have the shakes!" or "I've never seen him shuffle his feet." These have been a couple of the replies.

Parkinson's is not only shakes and shuffling.  It encompasses much more.  Many of the symptoms can commonly include those I listed earlier.  Because John has been diagnosed with the Traumatic Brain Injury (TBI) we've always just lumped any unfortunate symptom or deterioration in his health to the TBI. 

Recently, the VA has acknowledged that they are proposing changes to the way they view TBI and are embracing five (5) new diagnoses secondary to TBI for service connected compensation.  These newly acknowledged diagnoses include: unprovoked seizures, depression, Parkinsons, hormonal imbalances, and dementia. (See an informative article here from the Federal Register) While I'm glad they are finally acknowledging that there is "sufficient evidence of a causal relationship" and "associations" between these things, I'm interested to see how long it takes to get the actual service connection reviewed and rated. We can only hope the process is speedier than the 5-10 years it has taken them to figure these illnesses are linked.

While this is all still very new to us, I wanted to go ahead and blog about it as I've read that up to 15% of diagnosed TBI patients may develop Parkinson's.  This would mean that in the coming years, many more wounded veterans will develop these same symptoms and hopefully will be able to get quicker diagnosis and care than what we have experienced. 

While this is an unfortunate disease to have, and as John jokingly questioned "Why couldn't they give me a cool disease," if accurate diagnosis and medication helps these horrible symptoms, we eagerly await more pleasant results.