Parkinson's and DBS: the skinny

WE, the Forgotten. NOT for patients

Jan 4, 2015

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This is NOT for Parkinson's sufferers, but for YOU - the public. In fact, I truly hopePDers don't read this - they know it all and they suffer enough. This is HARD.

Okay. Here we are at post 2. For those that saw the first one, I salute you!! You are my BFF!

That said, I’m really struggling with this post….agonizing if fact, on all sorts of levels. How do I do justice to all Parkinson’s sufferers AND their spouses, families, carers? Because Parkinson’s is a BUSY disease – doesn't let up. Do I just talk about our own experiences? Nah…even I hate them. Downright depressing. How do I show the true colours of this disease and still maintain hope? It’s a horrifying disease – and I can’t get ‘round it. Parkinsonism is a HUGE spectrum, with each affected person having their own ‘unique’ variety. So, as I said…I’m struggling. I’ve only got one shot here, and I have to keep your interest for YOU to pass it onto others ; it’s the only way to change the dynamics. That makes me fearfully aware of my responsibility to you – the public – to tread lightly. Scary!

Let me start with a bit of a bomb-shell: nobody knows how many people globally have Parkinson’s. Yup – true. Why? Because there are so very many patients are out there without help or care. And the reason for that is our failing: we have NOT informed YOU. Sure, the PD Associations, Organizations, Foundations, individuals etc. do amazing, noble work. But it’s FOR the patient, to keep their heads up. Then why is PD so very poorly understood? Because it’s OLD news. Methinks it’s sort of been forgotten about.

I think the real problem here is perception. We've all grown up knowing the word ‘Parkinson’s’, but no one’s ever really explained what it is to some who've never been exposed to it. So it’s not your fault. That’s what I’m doing here. Parkinson’s Disease (PD) is all about Dopamine, or should I say – the lack of it. It’s the ‘feel-good’ hormone that works in just about every system in the brain and body. In the brain, it works as a one of the most vital neurotransmitter for all things calm, collected and bright. And its major function is movement. Take it away, and what you have is dysfunction and chaos. And that’s what PD is all about. I’m not going to go into the science behind it all, but imagine your head contains 100 marbles (instead of that rather mushy stuff) to make it work. In PD, 80 marbles have left the building before you even know you have a big problem. To make matters worse, not only are you going to gradually lose ALL those marbles, but their exodus is going to create living hell for you for the remainder of your life.

What may start out as a wee tremor will degrade over time into something formidable. And it will make your families lives hellacious, and the sufferers life….??

I’ll give you an example based on my husband Pete – a PDer - for some 15 years now. Pete (then aged 49) starts off 2000 with a shoulder ache and a bit of a hand-tremor. He’s lucky – takes a mere year of torment before he finds out he has PD and the best kind! Tremor-based (I’ll go into this another time). We’d done our research and stuff, and the conclusion we came to was we wanted to ‘delay’ the obvious: Levadopa. Very quick: Levadopa was developed as a chemical substitute for dopamine in the 1960s, but wasn’t deemed effective until the late 1960s. Before then, Parkinson’s patients had a life-span of about 20 years.

Back-stabbing Levadopa. It will give you a break – a ‘honeymoon’ period (as it’s called) for 5 – 7 years, in which (at least for the first couple of years) you feel like you don’t have PD! Payback however, is a horror. Over time, as PD progresses, you need more and more Levadopa (in all its compounds). Then it causes dyskinesia – an awful roiling motion that is uncontrollable and can be violent enough to hurt both patient and carer, amongst other equally debilitating symptoms. The other problem is there’s no turning back: once you've started, you’ll never get back the efficacy. It’s the only pharmaceutical that works for PD – no other choice in the end, because man…you’ll do anything to try and control some of your symptoms!

Let’s get back to symptoms of Parkinson’s. It’s a movable smorgasbord of ever-increasing symptoms and it will affect every system of your body on the way. Allow me to demonstrate one PD Scale:

Hoehn and Yahr Staging of Parkinson's Disease

1. Stage One
   1. Signs and symptoms on one side only
   2. Symptoms mild
   3. Symptoms inconvenient but not disabling
   4. Usually presents with tremor of one limb
   5. Friends have noticed changes in posture, locomotion and facial expression
2. Stage Two
   1. Symptoms are bilateral
   2. Minimal disability
   3. Posture and gait affected
3. Stage Three
   1. Significant slowing of body movements
   2. Early impairment of equilibrium on walking or standing
   3. Generalized dysfunction that is moderately severe
4. Stage Four
   1. Severe symptoms
   2. Can still walk to a limited extent
   3. Rigidity and bradykinesia
   4. No longer able to live alone
   5. Tremor may be less than earlier stages
5. Stage Five
   1. Cachectic stage
   2. Invalidism complete
   3. Cannot stand or walk
   4. Requires constant nursing care

Now, I reckon Pete’s between stage 3 & 4. Notice it doesn't included autonomic involvement. This is what we all take for granted: breathing, swallowing, speech, salivation, facial expression, hand-writing, Then there’s more, like bladder and bowel control; some of that’s down to the drugs. Forget about depression and mental aptitude as the disease progresses into the last couple of stages!!

See, as PD progresses you start with unwanted movement. Over time it becomes chaotic to say the least. In the end, all movement stops…the last marble falls out.

Here’s another Scale (the last I’ll show), both care ofhttp://neurosurgery.mgh.harvard.edu/Functional/pdstages.htm

Schwab and England Activities of Daily Living

• 100%-Completely independent. Able to do all chores w/o slowness, difficulty, or impairment.
• 90%-Completely independent. Able to do all chores with some slowness, difficulty, or impairment. May take twice as long.
• 80%-Independent in most chores. Takes twice as long. Conscious of difficulty and slowing
• 70%-Not completely independent. More difficulty with chores. 3 to 4X along on chores for some. May take large part of day for chores.
• 60%-Some dependency. Can do most chores, but very slowly and with much effort. Errors, some impossible
• 50%-More dependant. Help with 1/2 of chores. Difficulty with everything
• 40%-Very dependant. Can assist with all chores but few alone
• 30%-With effort, now and then does a few chores alone of begins alone. Much help needed
• 20%-Nothing alone. Can do some slight help with some chores. Severe invalid
• 10%-Totally dependant, helpless
• 0%-Vegetative functions such as swallowing, bladder and bowel function are not functioning. Bedridden.

Looking at the above; by 50%say, that’s in part why the public know so little about Parkinson’s – who in hell wants a public life with this? Taxi’s will refuse you because they think you’re drunk. Because of the relentless fight with symptoms, you’ll be constantly exhausted so I don’t expect you’ll go out much alone. People will look at you in alarm (or worse, pity). It’s a curse, pure and simple. At least there’s DBS – another great boon (but not a cure) for PD. I’ll talk about that next time. And what else PDers get up too!

Please, if this means anything to you at all, could I ask you to copy and paste the browser above the posts, and email them to everyone you know? Sounds alarmist, but by 2030 I can promise YOU’LL know about PD – it’s growing (and in teenagers too) exponentially.