serendipity

hkandray.com

This fall, I had the pleasure of discovering a blog chronicling one woman's adventures with Parkinson's Disease in California. Now, Im not only jealous of the fact that she has far better weather to look forward to over the next few months than I, but I am extremely envious of her talent as a writer. She is prolific, smart, humourous and regularly manages to capture so much of what life is like with Parkinson's today. In a recent blog, she set out to answer common questions she faces as a person with PD. I thought the scope and clarity of both the questions and the answers was worth reposting here and so, what follows is a rather large excerpt from her "Q & A" posting of November 2014. If you have a chance, do check out her blog yourself - btw she often includes a thematically-linked playlist of songs that is gold! You'll find it at http://hkandray.com .

In this excerpt the first line is the oft-asked question, the second line is her answer and the third line or paragraph includes facts. She notes that the bold text is the important part. Enjoy and thanks to HK for guesting here today!

How many drinks have you had?

None. Um, it’s nine o’clock in the morning at Trader Joe’s. What gave you that idea?

Parkinson’s disease is a slow, progressive disease affecting brain centers controlling movement, balance, posture and walking. The slurring, tripping, shaking or slowness you perceive is part of a neurologic condition, not alcohol or drug abuse. 

Are you cold?

Not unless I’m provoked. Oh, you mean temperature? No.

In general, tremor (shaking) begins in the hands and arms, although it can also occur in the jaw or foot. Not every person with Parkinson’s disease has tremor. Any type of stressor will exacerbate symptoms. 

Are you eating?

I have a high metabolism and I work out like an animal chasing a meal. Also, a drop in weight (10 to 30 pounds) is common in people with Parkinson’s disease because of swallowing problems and energy (calories) used by tremors and involuntary movements.

Why are you always running to the bathroom?

With Parkinson’s there is often a strong desire to urinate (urgency), increased frequency, and incomplete release of urine, so you have to use the loo more often. Now get out of my way. 

You look exhausted. Why don’t you go to bed earlier?

Difficulty falling and remaining asleep is common with PD. Frequent nighttime wakening leaves me exhausted in the morning. I have such vivid dreams when I do sleep. Did we make out last night?

Why are you walking so slowly?

Parkinson’s is a movement disorder. Balance, gait, mobility, freezing, and automatic movements are all affected. This means that at times I may fall, shuffle, favor one side of the body, freeze up, or appear stiff. I used to be a sprinter and prefer speed. Do you want to race? Bradykinesia = frustrating problems with movement and people with Parkinson’s disease tend to withdraw from activities for this reason.

Why are you such a downer right now?

Depression and anxiety are a part of this disease. Not only because of the increasing physical challenges, but because chemistry is altered. It turns out dopamine is important for more than just movement. Medications can also cause severe highs and lows. Without proper support, this disease can be unbearable. They say to reach out to a trusted friend if you are overwhelmed. I say, reach out to someone who gets it. 

Why don’t you just relax?

Rigidity is the inability for the muscles to relax normally. Most people with the disease develop some degree of rigidity, or stiffness of limbs. This rigidity is caused by uncontrolled tensing of muscles and inhibits your ability to move about freely. My body hurts, all the time. Chronic pain may add to the impression that I am acting uptight. This is entirely physical and not a choice. Also I have a six pack (in the fridge).

What are you staring at?

The Parkinson mask can hide emotions because facial expressions require active muscles. This is a disguise. Inside we are really laughing at these ridiculous questions. Also, I was trying to see what time it is and there is a clock behind your head. 

What’s your problem?

Oh, do I appear to be a bit aloof? Actually, the worst part of PD so far is not physical. It’s the lack of understanding or support from people I believed were close friends. If I could give one bit of advice to someone living with a disease or anyone in chronic pain, it would be simple: know who you can trust and count on when it gets overwhelming, because it will. Be prepared for a rude awakening and manage your expectations. It is my hope you will not experience betrayal or abandonment from anyone in your inner circle. Find those who at least try to understand part of your experience, because underestimating the toll of chronic pain is life-threatening. 

Why don’t you go out anymore?

On good days, I’d stay out all night if I could. You’ll have to pull the ripcord, OK? If I get my way, we’re staying up all night. Endlessly fascinated by people and life in general, I have tremendous gratitude for this beautiful life and want to take it all in. On bad days, I practice acceptance or cry, and on really bad days I curl up in a ball and reach out for a touchstone (trusted friend who may offer moral support). 

What’s the silver lining?

Humility. Awareness. Realization. Acceptance. Compassion. Patience. The lessons keep coming. I wonder what’s next. So many gifts. 

So you’re like Michael J. Fox?

No, but thank you for the compliment. I certainly aspire to be as strong and productive as he after three decades of this cruel disease. Fox is a warrior. 

Why don’t you twitch like MJF? Why does he move around so much?

I can’t speak for him, and I know he didn’t set out to be a spokesperson for PD, but https://www.michaeljfox.org is easy to navigate and contains a wealth of information. That type of movement seems to be a side effect of medication, and not the actual disease. Some meds serve to assist movement and can cause dramatic jerking or twitching movements. Each body presents differently- not everyone shakes or encounters exactly the same challenges. 

Does it hurt?

My body hurts, especially when I don’t make time for fitness/activity. It reminds me every day that millions of people are living with a chronic illness and many are suffering through it without adequate support. Suffering changes personalities. I can understand why some choose to anesthetize themselves as the pain increases, but we all know where that path leads. Untreated pain diminishes and eclipses lives and destroys families. I’d like to see that change. As people become more aware, perhaps we’ll get to see some of that change. 

Are you on drugs?

Yes, but not the fun kind you may have tested in college.

So you get meds and it’s better?

It’s tricky because the meds are always changing. It’s not like you find the perfect combination and stick with it. The body keeps changing and becomes somewhat immune to or tolerant of increasing and changing dosages. Unless you undergo a surgical implant like DBS (deep brain stimulation), I know of no way to manage Parkinson’s without some form of medication. 

Do the meds have side effects?

Let me think about this one…YES! Don’t take my word for it- you can start by doing your own search on the side effects of dopamine agonists. We’ve touched on this a few times. The other types of meds either make you want to throw up, sleep, crawl into a cave or jump off a bridge. Links to previous posts for your perusal:

http://hkandray.com/?p=275

http://hkandray.com/?p=241

What do you want?

World peace. The eradication of poverty. Education made available to everyone. 

No, really. What do you want?

A nap. 

To read "Q & A" in its entirety, please visit 

http://hkandray.com/?p=1194

GMO OMG

I’m no Siskel or Ebert but I recently saw a film that I’d have to give “two-thumbs up” to. GMO OMG by Jeremy Seifert was released in July 2014 and features one man’s search for answers about genetically modified organisms (GMOs) and how they affect our children, the health of our planet, and our freedom of choice as consumers.

It struck me that, while perhaps not directly related to Parkinson’s, there may be some common chords between the issues of PD and GMO. For people with Parkinson’s, a chronic neurological disease of mostly unclear origin, an increasing number of studies and papers have been reflecting on toxic chemicals used in our environment as possibly giving rise to PD and other neurological conditions.

There is speculation that everything from exposure to chemicals such as Roundup, and the use of "super corn" seeds that completely wipe out all their enemies, will have serious implications for the environment. Further, there are no long term research results to ensure the safety of the people and the earth concerning such products.

Now, I don't pretend to be a scientist (does a social scientist still count?!?) so, in Canada, I turned to David Suzucki Foundation* to help further my understanding. GMO's — or genetically modified organisms — refer to the plants or animals created through merging DNA from different species. The first GMO crop (the Flavr Savr tomato) was approved by the FDA in 1994 and, since then, a variety of corn, soya, sugar beets and canola have become common local crops in Canada. Others, such as cottonseed oil, papaya, squash and milk products are imported from the USA into Canada. In a mere 20 years, GMO ingredients have made their way into most of the processed foods available on Canadian grocery shelves. Apples, potatoes and wheat are all in the lineup for approval.

GMO crops, when first introduced, were touted as the answer to world hunger. The argument was that by developing pesticide and herbicide resistant crops, farmer's would be able to increase their yields and decrease their costs. This has not proven to be the case. Instead, bugs and weeds have become increasingly resistant to the widespread applications of these chemicals, leading to increased use of both. More spraying means more costs for the farmers, more damage to the environment and more health concerns.

It also means more product purchased from the seed producer. The companies that develop and patent GMO seeds are the same companies that develop and patent the pesticides and herbicides to which the unique seeds are resistant. Monsanto is the largest seed company in the world and owns about 86% of GMO seeds sown globally. It is also the parent of Roundup.

The safety of GMO foods is unproven and a growing body of research connects these foods with health concerns and environmental damage. The American Academy of Environmental Medicine suggests there is more than a casual association between GM foods and adverse health effects and that GM foods pose a serious health risk in the areas of toxicology, allergy and immune function, reproductive health, and metabolic, physiologic and genetic health.**

In light of these growing concerns, most developed nations have at the very least, adopted policies requiring mandatory labelling of GMO foods and some have issued bans on GMO food production and imports. In Canada we have neither. As consumers, we are largely unaware that the foods we choose contains GMO ingredients. It is this basic right to choice that is behind the growing movement to have GMO foods labeled. While environmental and food advocates lobby for labeling, other groups, like The Non-GMO Project, have created voluntary non-GMO certification to facilitate consumer information. 

GMO OMG is an informative and alarming call to action for those concerned with our health and environment. It is produced in a very accessible format and the story unfolds in an engaging manner. Good soundtrack too!  It's not likely to show up in your local cinema complex but try your local library or order on-line.





*  (Understanding GMOs) www.david suzucki.org. 

** Truth11.com

I'm not angry anymore

I'm not angry anymore. And therein lies my problem. 

You see, for years I've been espousing the importance of being positive, confronting Parkinson's and the challenges it has brought my way. Putting my best foot forward, remaining optimistic, retaining a sense of humour. Most health care providers, literature, on- line resources and fellow Parkies will tell you the same thing.If you've been a regular or even occasional reader of this blog before you will likely recall a post or two that did this very same thing. I may not be a pollyanna but I have come to appreciate the benefits of a sightly more positive approach.Why even last month, with the help of a few fellow Parkies, I detailed the "good things" PD has brought into our lives! 

So, have I suddenly turned bitter and disenchanted? Abandoned this emphasis on positivity? Not at all. I've just been thinking of late that I need to get a little more anger in my life...to stoke up the proverbial "fires of discontent"...motivate me to be more active and engaged.

Well, perhaps not that angry but you get the idea I hope. 

Not to do so will result in an increasingly insular life and this, for me, is not a good thing!

I must confess that, as much as I still trumpet a positive approach to living with PD, I have many moments when I am extremely challenged to be positive. When I'm tired or overly stressed.When I struggle to do things that used to be routine. When I react inappropriately to something my kids have done or said. When I'm having a particularly bad day physically. On such occasions, I need to endeavour to do better. 

And, on such occasions I will try. 

But, for the rest of the time, I'm going to be mad as hell and I'm not going to take it anymore!