What if somebody claims - or implies - they have "a cure?"

There is a woman who claims her company has a serum that cures PD, cancer, and a host of other diseases.  She seems to be looking for test subjects but has not provided information about any testing already done that backs up a single one of her claims.  She was removed from at least one PWP forum because selling products and recruiting test subjects as a way to sell your product is not what they’re about.  I am not going to give her further publicity here by naming her.

Then there is Restore Gold.  They say their ingredients are a list of herbs that may be of some value in relieving PD symptoms. And the ingredients might help. (To their credit, they've added information about research into individual ingredients to their website.)   

Restore Gold "offices"

But ...

One of their ingredients is green tea extract.  While green tea seems to have some health benefits, its extract is so highly concentrated that it is known to cause liver damage; so one of the “healthy” ingredients can damage your liver.  Somehow that’s not on their advertising materials.

Their ads are full of people in white coats – looks like scientists and doctors.  But can you find anybody who is either on their website?  Nope.  If you telephone?  Nope. Oddly, there is no name associated with the company at all.  If you had developed a ground-breaking treatment, wouldn't you want your name associated with it?

There are testimonial videos on the slick website with first names, and no date of when the testimonial was made.   There are also written testimonials, but they won’t include commentary from anyone who hasn’t used their product for at least three months, so how accurate are they?

I was curious about their facility – they make it sound like offices and maybe a lab.  But it turns out to be a....  warehouse in an industrial park.  Dozens of business use that same address – so is it what’s known as an accommodation address? 

Per the Restore Gold website, The products and claims made about specific products on or through this Site have not been evaluated by the United States Food and Drug Administration and are not approved to diagnose, treat, cure or prevent disease. This Site is not intended to provide diagnosis, treatment or medical advice.

Who are these people? Why are they not proudly stating, “I’m so-and-so and I might have a natural treatment for PD.”  Why no names?  Are you starting to think they’re trying to make a buck off of desperate PWP and their families?  Monthly cost is $99.95, or $1,199 per year.  

What's the difference between Parkinson's and Parkinsonism?

                From what I can tell, Parkinson’s Disease, good ol’ PD, is one form of Parkinsonism.  Then there are diseases that look like PD, but aren’t, including PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), and MSA (multiple system atrophy).  These often look like PD at the start, but differentiate later; they can also progress more rapidly than PD.  Just to make it confusing, there is the non-tremor-dominant form of PD (you have PD but no tremor), which progresses more rapidly than garden-variety PD (though each person’s PD is so individual, I’m not sure what “garden variety PD” means). Oh, and some of these don’t generally respond to anti-PD medications like levadopa.  These are much rarer than PD, too.  (And if you try to Google search on CBD, for example, you’ll discover that “CBD” is also shorthand for cannabis oil, quite a different thing altogether.)

               Why should you care about Parkinsonisms?  Well, you might be diagnosed with one of these if you don’t fit the mainstream of PD.  I don’t have tremor, so I have a Parkinsonism.  I really, really hope I just have the non-tremor dominant PD.

                There is so much symptom overlap, that nobody knows what you have for sure until they look at your brain during an autopsy - useful for research, certainly, but no help to you personally.  This means that you could still have PD and can benefit from PD support groups and exercise classes without guilt.  You can even participate in some clinical trials.

                Frankly, if you’re progressing slowly or you don’t have a Parkinsonism diagnosis like “possible CBD/MSA/PSP” you should stop here.  This is where we get into “there are worse things than Parkinson’s” territory.

                 Fortunately, if you need more information, there are several places to go:

• http://www.epda.eu.com/about-parkinson-s/types/corticobasal-degeneration-cbd/  The European PD Association has a good description of many of the Parkinsonisms.
• https://www.psp.org/   CurePSP has information about multiple Parkinsonisms such as PSP, CBD, and MSA, among others.  They also have information about online and in-person support groups. 
• www.theaftd.org/  Association for Frontotemporal Degeneration   (they have information about PSP, CBD, and others)
• https://www.multiplesystematrophy.org/  Multiple System Atrophy Coalition
• https://rarediseases.org  National Organization for Rare Diseases
• https://www.brainsupportnetwork.org/education/atypical-parkinsons/ Brain Support Network (supports families dealing with PSP, MSA, CBD, and Lewy Body Dementia, and supporting brain donation so that more accurate diagnosis is possible)

The US’s National Institute of Neurological Disorders and Stroke has information about symptoms and related organizations.  For example:

• https://www.ninds.nih.gov/Disorders/All-Disorders/Corticobasal-Degeneration-Information-Page#disorders-r3  CBD
• https://www.ninds.nih.gov/Disorders/All-Disorders/Progressive-Supranuclear-Palsy-Information-Page PSP
• https://www.ninds.nih.gov/Disorders/All-Disorders/Multiple-System-Atrophy-Information-Page MSA

                Why have I gathered this here?  Because I found this information mostly by following breadcrumbs – wandering around and stumbling on it.  The https://www.NINDS.nih.gov  website has a lot of this information, but I didn’t tumble onto it for months.  It is scary enough to be given a Possible Parkinsonism diagnosis, without information, too.

Image from Pixabay.

Rock Steady Camaraderie

I really miss my Rock Steady buddies.  Home with the flu, I don’t just miss the exercise (and wonder when I will be able to get back to it).  I miss the people.  The coaches who work us hard and then work us hard some more.  The volunteers who encourage us, and help us improve our exercise or boxing technique, and keep us from falling over.

But most of all the other boxers.  We give each other encouragement and moral support.  But we’re more.  We’re friends.  We understand better even than our care partners what we’re going through.  What we’ve faced and what we’re facing.  We care about each other.  When somebody isn’t there, they’re missed.  Only here would we be relieved to hear that it’s “only” a back problem, or “only” a knee problem, and not unexpected progression of PD.  We watch each other get a little better.  We watch each other get a little worse.  We see and participate in struggle, overcoming, persistence, heart.

A special word for the caregivers, who come day after day, week after week, often because the boxer can’t drive any more, but also for the support and community.  Special people.

I came for the exercise, and I love that (and people who know me probably still find that astonishing).  But the heart of Rock Steady is the people.  The heart.

Dedicated to the boxers, coaches, volunteers, and caregivers at Rock Steady Boxing, at Squared Circle Studio in Deep River, CT, USA.

Physical Therapy - individualized help

Early on you will need to find a PD-experienced physical therapist. (That’s my personal opinion, but it’s based on my personal experience.)

Are you having problems with stiffness, with balance, with your gait (how you walk), slowness getting into / out of cars, problems turning over in bed?  Maybe you think you might need a cane or a rollator (used to be called “walkers” but now they can be used indoors and out, include a brake because they have 3-4 wheels, can be pushed without lifting, support walking at a good clip, and often can be folded for transport; see the image below.)  A PT (physical therapist) can help with all of these.  While a good exercise program is vital for PD, and you surely want to have that, too, physical therapy is individualized exercise, specific to your individual needs.

Should you wait until your doctor recommends PT?  I don’t think so.  I asked my doctor at the first followup appointment after my diagnosis if I should see a PT; since I was travelling a considerable distance to see the doctor, he didn’t know any PTs in my area, and asked me to call him with the name of a PT so he could do the formal referral (to make the insurance company happy).  The doctor was happy that I was being proactive.

Why do you want a PT with PD experience?  PD is way different than an athletic injury or recovering from surgery.  You want a person who knows the problems you are likely to have (including the fear of falling that can cause you to fall), and has experience helping you practice strategies that work.  PD has its own unique challenges, and you don’t need to be teaching your PT about them (or persuading them that these are real problems!)  Update:  Here's an easy way to find a PT with PD experience: https://parkiesupport.blogspot.com/2018/08/finding-pd-physical-therapist.html

A good PT can give you an exercise program that addresses your specific problems or deficits, help you choose and then teach you to correctly use a cane/rollator/wheelchair if you need one, and may be able to help you find other specialists when you need them – like an occupational therapist or a speech therapist.

My PT worked with me when I was first diagnosed to help me with walking and using a cane (I was falling and couldn’t walk straight).  About 6 months later, I sought her out again when balance had me worried again; after working with her, I was able to walk inside comfortably and rapidly without the cane, and reserve the cane for outdoors and crowds.  I also practiced dealing with compromised balance and became more confident in my abilities.  This isn’t trivial; if you have balance problems, just worrying about falling makes you more likely to fall.  Here are some of the ways that PT can help: http://www.moveforwardpt.com/SymptomsConditionsDetail.aspx?cid=98297eb9-eaa1-452e-9489-b46eedf27e80#HowCanPhysicalTherapistHelp 

        PT is exercise – it helps keep you flexible, and strengthens your muscles so you can do more.  And part of the therapy is exercise; expect to work.  I learned not to schedule any other exercise for days when I had PT because I was tuckered out.

So how do you find a good PT?  If your doctor is located closer to you the doctor may have somebody in mind.  Since many of us travel quite a distance to see the neurologist or movement disorder specialist, the doctor may not know anybody local to you.  Why do you want somebody local?  Because you may see the PT several times a week for several weeks.  Even if you still drive, you want the drive to be short when you go so often.

Ask everybody – I got the same name coupled with an enthusiastic recommendation from the health club I was going to and also from a friend.  You can also call PTs in your area and ask what their experience is with PD.  Here are some additional suggestions for finding a PT: https://www.fsbpt.org/ThePublic/FindaLicensedPhysicalTherapist.aspx 

You also need to ask the PT:  Do they accept your insurance?  Can they see you at a convenient time for you?  Can they see you at a place that works for you – their office or your home.

Besides whether your insurance covers this particular PT or PT practice, recognize that you will usually have a co-pay for each visit; some insurance may also put a limit on number of visits/year.  Find out.

The extra cost doesn’t mean don’t do it.  PT can bring significant improvements in the quality of your life.  PD is a movement disorder, remember?

Remember that your insurance probably wants a referral from your doctor, so call your doctor’s office to find out how to get it; you may just need the name and phone number of the PT you want to work with.

When you first meet with the PT, ask about their expertise with PD.  Also, talk about your goal – what are you hoping to accomplish?  Sometimes you don’t know, beyond, “I want to feel better/move more easily/fall less.”  Ask the PT what’s their goal for you.  Also, how long should you be coming?   After seeing you move and talking to you, the PT should have a plan with some kind of end point.

Don’t wait until you can’t move.  Take control of your life.

Images from Pixabay.com.