My dad went to see a neurologist yesterday. He received some mixed news. This particular doctor has not ever thought my dad had Parkinson’s disease, but until yesterday could not really be certain about what he might have. Now after trying multiple Parkinson’s medications – he had the clue he needed.
My dad has one of two things – Progressive Surpa-nuclear Palsy or Multi-System Atrophy – both mimic Parkinson’s and many people are misdiagnosed. The one major clue to a diagnosis – they do not respond to any of the Parkinson’s medications – which was the determining factor for making the call for my dad.
So what does knowing that mean for our family – it means that my dad will not get better and that he will continue this downward spiral.
Here is some basic information gotten from an Internet search;
Progressive Supra-nuclear Palsy (PSP) –
Progressive Supra-nuclear Palsy (PSP) mimics Parkinson’s and is a rare brain disorder that causes serious and permanent problems with control of gait and balance. It is difficult to diagnose because it is so similar to Parkinson’s – The symptoms of PSP are caused by a gradual deterioration of brain cells in a few tiny but important places at the base of the brain, in the region called the brain stem. PSP is often misdiagnosed because some of its symptoms are very much like those of Parkinson’s disease. After trying numerous Parkinson’s drugs, which did not work, the Dr. is left with this possibility. There is no treatment and the disease will continue to progress. While no one dies from PSP, one generally dies from complications of the disease. PSP gets progressively worse but is not itself directly life-threatening. It does, however, predispose patients to serious complications such as pneumonia secondary to difficulty in swallowing (dysphagia). The most common complications are choking and pneumonia, head injury, and fractures caused by falls. The most common cause of death is pneumonia. With good attention to medical and nutritional needs, however, most PSP patients live well into their 70s and beyond. (OK my dad will turn 83 in October! Guess we proved this one point is valid!) For more information click here.
The other one – Multi-system Atrophy seems to be more likely as Dad fits the symptoms a bit better –
Multi-system Atrophy (MSA) is a lot like PSP – Multisystem atrophy (MSA) is a group of rare, multisystem degenerative diseases that have several clinical features of Parkinson’s Disease and are sometimes referred to as the “Parkinsonism-plus syndromes.”
Multisystem atrophy has three cardinal features:
Autonomic failure (including orthostatic hypotension, erectile dysfunction, and urinary incontinence or retention)
Cerebellar ataxia (failure of muscular coordination)
All three characteristics occur in the majority of MSA cases, but with considerable variation with regards to specific attributes, and any one of the three may predominate. If autonomic failure predominates, MSA is known as Shy-Drager Syndrome. If parkinsonism predominates, it is known as striationigral degeneration. Striatonigral degeneration is usually indistinguishable from Parkinson’s disease, except that it does not respond to Parkinson’s treatment. If cerebellar ataxia predominates, MSA is known as olivopontocerebellar atrophy (OPCA). For more information, click here.
We could have dad tested to determine what specific syndrome we are dealing with, but as my brother put it, “Why spend the money to know when neither one is treatable.”
So for now, we know that my dad has Parkinson’s with an Attitude, that exercise and PT are critical and that time is short. I am now very thankful that Courtney has decided to delay her entry into Union until next fall. I am also very thankful that while I do not know exactly what the future holds, I know Who holds the future and that He will give me what is needed when I need it.
I would like you to pray for me as my emotions have been a bit crazy and wild this morning since talking with my brother. It has hit me with more depth, that each time I see my dad could potentially be the last time I see him alive. While I have been thinking that for some time, knowing how quickly he has gone down in 2 weeks and hearing this news this morning, makes it very clear that time is short. My father and I are very close and while he could potentially live for another 5 years or so (according to one of the web sites that average length of life after onset of disease is 10 years – he started having symptoms 5 years ago), my intuition tells me it won’t be that long.
Thanks for your prayers and support over the past years and for the future as I step forward into what is next. Pray for wisdom as Gary and I pray and plan for this new phase of helping my dad to finish the race well – I know more than anything he needs to find peace with God through Jesus – Pray that he will know this peace before he takes his last breath on this side of eternity.