Friday, May 27, 2011

As Posted on the National Parkinson's Foundation

From the National Parkinson's Foundation -

Care Partner Needs: Survey ResultsA survey of care partners to people with Parkinson’s disease (PD) illustrates the challenges that this population faces and the need for comprehensive programs and services to address their needs.

As the population of the United States ages, the incidence of Parkinson’s is expected to increase. This will affect the number of people needed to care for people living with PD. The needs of PD care partners are poorly understood and often overlooked.

So, in 2006, the Parkinson’s Disease Foundation (PDF) undertook a survey of care partners to people with Parkinson’s to better understand and address the needs of this growing population. PDF developed a 53-question survey which was available through several online locations, including the PDF website,, during the spring of 2006.

1,0001 care partners - 81 percent female and 19 percent male – responded and the results shed lights on the needs of care partners to people with Parkinson’s.


Of the 1,001 care partners who responded:

76 percent were between the ages of 45 and 74.

63 percent were caring for their spouses.

27 percent were caring for a parent.

69 percent have provided care for one to six years.

Care partners reported on their responsibilities:

45 percent provide care for more than five hours a day.

78 percent spend time interacting with health care professionals.

90 percent help to manage difficult PD symptoms.

Care partners told us about the demands that impact their lives:

65 percent are concerned about finances.

71 percent say they cannot take time for themselves.

55 percent say they need help giving care at times.

Caring for someone with PD can range from "quite manageable" to "exceedingly difficult," with responses demonstrating that:

15 percent of care partners are operating in a very low stress environment.

55 percent of care partners operating in a fairly high to very stressful environment.

The level of stress for care partners was a function of a number of indicators including:

things that the care partner does (e.g., provides care at least five hours a day; interacts with healthcare professionals and manages difficult symptoms);

things about the person receiving care (e.g., he or she is at least 75 years old; care partner is not satisfied with communication with the person receiving care;

the care partner feels that the person receiving care is not doing all that he or she could do to manage her or his disease); and

impact on the care partner (e.g., care partner do not take time for themselves; there are times when care partners need help; care partners are concerned about finances).

Although some of the indicators are likely to carry more weight than others, as the number of indicators increased, we inferred that the environment was more difficult, demanding and stressful for the care partner.

What Does it Mean?

This study provides new evidence of the challenges that Parkinson's care partners face as they struggle to meet the needs of their loved ones and to balance the competing demands of giving care, working and meeting other family responsibilities. The data suggest the need for a more comprehensive approach to programs designed to support and sustain care partners of people with Parkinson's. One possible limitation of this study is that the data only reflects the responses of care partners with Internet access and these results might not be representative of the larger PD care partner community.

Saturday, May 7, 2011

Parkinson's Interview with Anonymous

Q:  What is your age and sex?

PWP:  54 Male

Q:  What was your age at the time of diagnosis?
PWP:  50

Q:  Why types of physician are you seeing – a family practitioner, a general neurologist, or a neurologist specializing in Parkinson’s disease?
PWP:  Neurologist specializing in movement disorders

Q:  Explain in detail how you were diagnosed.
PWP:  I saw a local Neurologist who ordered an MRI and referred me to the specialist. I didn’t have any issues , but then again, PD runs in my family.

Q:  Are you married or in a relationship?
PWP:  Married

Q:   Do you have children?
PWP:  No

Q:  Please detail you medication schedule. If you can, list all the medications and the doses from your diagnosis through to your current medication schedule, along with any negative side effects you may have experienced.
PWP:  After my initial diagnosis I was only on mirapex, a dopamine agonist, don’t remember the dosage. After the first year Levodopa was added. I took one 25/100 four times a day along with the mirapex.

About my third year the Levodopa was increased to two pills three times a day and one pill at bedtime.

Also, we switched my mirapex to requip in my third year because I had some side effects from mirapex.

In my fourth year and now, I take two Levodopa four times a day, and during the day I take one requip with my dopamine, but at night I take two requip to help me sleep. My body is now very clearly in “On/Off” modes and I can tell it needs more dopamine.

Q: Were you alone or with you wife when you received your diagnosis?
PWP:  With my wife.

Q:  How did getting that diagnosis make you feel? Was it a shock to you or something you expected?
PWP:  Even though we expected it, it was still like a slap across the face.

Q:  If you expected it, why was it like a slap across the face?
PWP:  Good question. Even thought it was expected, when the neurologist tells you that you have an incurable disease, there is a “facing your immortality “ moment. Even though PD is slow moving

Q:  What was your wife’s reaction to your diagnosis?
PWP:  She expected it as well . She was very supportive.

Q:  How did you tell the rest of your family and friends?
PWP:  Since it runs in the family, no one was surprised. However, even though it was expected, the disease can be so different in each person, to this day I don’t think my family or friends understand the effects PD has on me.

Q:  How did the rest of your family and friends respond?
PWP:  They understood but no one really seems to want to know any details.

Q:  You have specifically asked to speak about the effects Parkinson’s has on sexuality and intimacy. Why is this such an important topic for you?
PWP:  This is such a sensitive and private area that I don’t feel is openly addressed any place I have seen and it can have serious benefits as well as serious consequences.

Q:   What are some of the problems with intimacy you have faced as a result of Parkinson’s?
PWP:  65% of men with PD have erectile dysfunction. We all know there are pills to help this and they do work. However, they can have side effects and your partner may not understand all the challenges you face both physical and mental.

I can only speak for myself but here is a list of issues I feel need to see the light of day:


Most of the worst side effects never manifest. But we all know PD leaves the patient with less energy and something this simple can have a big impact on a PWP. ED meds often leave one feeling like they have the flu the following day. A small price to pay for an otherwise healthy person. However, when coupled with PD, the next day can almost be completely lost due to fatigue. This forces one to both plan more for intimacy (weekends when you may not have a lot of activity planned) and at times you may have to choose between maintaining that physical connection with your partner and your own comfort or health. Partners will need to be empathetic and understanding.


PD can cause depression, confidence issues, etc. When you add ED , you often add to the confidence issues and the PD patient may feel even more inadequate or isolated. For a young onset PWP who is still sexually active this area can be like a minefield and without a very understanding partner could have devastating results.

Q:   Do these issues affect your marriage? If so, please explain how.
PWP:  They have not yet but only by the grace of God and a very understanding wife. At this point I think it is more a problem to me.

Q:   Does having Parkinson’s make you feel less adequate in the bedroom? If so, why?
PWP:  Yes. Even without ED issues there are still other issues like energy level, apathy, depression, embarrassment over tremors or loss of shall we say being able to move around with ease.

Q:   Are you on any medication for sexual dysfunction caused by Parkinson’s disease?
PWP:  Yes, Levitra.

Q:   Levitra can often have uncomfortable side effects. What side effects, if any, have you experienced?
PWP:  Mostly fatigue and muscle aches the following day to the point of not being able to function well until about noon.

Q:  Do you feel that it is worth taking these medications when they cause such horrible side effects?
PWP:  Yes because I think it is important to maintain a physical connection with your partner as long as possible. All to soon, the partner will have to face losing the person they married in so many ways. A PWP changes, almost morphs into something completely different over a period of time and I hear spouse/caregivers say they miss their partner even though we are still here, living, we are greatly changed by the disease.

Q:  Do you ever fear a time when you can no longer be intimate, due to Parkinson’s?
PWP:  I don’t fear it. I know it’s coming. But it will be sad. We will find other ways to maintain intimacy.

Q:  How does this possibility make your wife feel?
PWP:  I don’t know for sure. I believe she knows and accepts that inevitability.

Q:   What are the top three obstacles you have had to overcome in regards to Parkinson’s disease and sexual intimacy?
PWP:  ED, Energy level, Confidence

Q:  Do you feel as though you have overcome these hurdles or is it still a work in progress? Explain.
PWP:  Mostly , except for energy level which will always be a struggle.

Q:   Do you discuss these problems with your doctor? Why or why not?
PWP:  We have. It’s important for your doctor to get the whole picture because of the likelihood of depression and other aspects of PD.

Q:   Why do you feel there is not much information regarding such an important subject?
PWP:  People are likely unwilling to share intimate details.

Q:   What advice do you have for others who may be experiencing sexual intimacy problems as a result of Parkinson’s?
PWP:  Be open and honest with your partner and understand that intimacy can take many forms. Resist feeling inadequate and learn new ways to express your love and support. In short, NEVER give in. Adapt and overcome.

Thank you, Anonymous, for such a personal interview! 
For more information on PD and sexual intimacy, please click the following links:

Keeping the romance alive!

Sex and PD: Making Relationships Work

Sexual Function in Parkinson's Disease

Parkinson's Disease and Your Sex Drive

Friday, May 6, 2011

My Life as the Hummingbird

Some months ago, while updating the blog, I changed the background to a pink silhouette of hummingbirds.  At the time, I didn't really know why I chose that as the new backdrop to the blog, other than the fond memories I had of watching the tiny birds hover above my grandfather's azaleas as a child.  More recently, I have developed a strong bond, or connection, to the hummingbird.  It's symbolism and mythology are especially meaningful to someone well into their journey with PD.

Hummingbirds are only found in the Western Hemisphere, so they are not a part of traditional fairy tales, myths and legends of European and African descent.  However, Native American mythology is rich with stories of the hummingbird.  Due to their ability to go into torpor, a hibernation-like state, and quickly waken again, Native American legends often tell of this tiny bird renewing life, or bearing with them light like the sun.  One belief is that hummingbirds act as messengers between words, helping shamans keep the balance between spirit and nature.  There is a Pima legend that tells of the hummingbird who, like Noah's dove, brings back a flower as proof that the great flood is subsiding; life renews itself in a brighter day, in a better world. 

Symbolically, the hummingbird represents regeneration and resurrection.  She is the creature that opens the heart and allows it to heal.  The hummingbird is the only creature that can stop instantly while travelling at full speed.  She can hover, fly up, down, left and right.  She can also fly backwards, as if glimpsing into the past.  The way a hummingbird eats is also amazing - with her long, thin beak and tongue, she passes through the tough and often bitter outer layers of flowers to reach the sweet, juicy nectar within. 

Hummingbirds teach us that no matter how busy we are, no matter how fast we are going, we must always make time to stop and search for the sweetness of life.  We must look past the bitterness and the tough times, and instead focus on the light-hearted joy that comes our way.  Like the bird that hovers over the beautiful flowers in the garden, don't we all want to hover over the beautiful moments in our lives?  Don't we all wish we could fly backwards into our past, savoring each delicate, magical moment of it?  Hummingbirds flap their wings in a slight figure 8 motion, the symbol of infinity.  Infinite life, infinite love, infinite beauty, infinite joy, infinite patience, infinite wisdom.

The further into the world of PD that Keith and I go, the more the hummingbird speaks to me.  This tiny bird teaches me so many invaluable lessons.  Like the bird that seem to die each night and resurrect and renew her life each glorious morning, I too, renew myself each day, in faith, in prayer, in love, in commitment to my husband.  Like the bird that stops mid flight to hover over the beautiful flower, drinking in that which sustains it, I too, have learned to stop in my busiest moments and hover near the beauty of my own life, drinking in the sweet sights and sounds of my family.  Like the bird that moves her wings in a motion of infinity, I have found infinite joy and love, and that I must pray each day for the infinite wisdom and patience I know I will fall short of. 

If PD is a flower, then I am the hummingbird, constantly hovering over it, reaching deep, past all that is bitter and rough, to the sweet nectar that nourishes life, that which sustains me.  With infinite love I move my wings; I move myself  up, down, left, right, in any way that is required of me to reach that nectar.  And sometimes I even fly backwards, looking to the flowers of yesterday, savoring only how pleasant each flower was.  How wonderful to be a tiny little hummingbird amid the dark, scary thorns of PD. 

Summer Story by Mary Oliver

When the hummingbird
sinks its face
into the trumpet vine,
into the funnels

of the blossoms
and the tongue
leaps out
and throbs,

 I am scorched
to realize once again
how many small, available things
are in this world

that aren’t
pieces of gold
or power-------
that nobody owns

or could but even
for a hillside of money-----
that just float
in the world,

or drift over the fields,
or into the gardens,
and into the tents of the vines,
and now here I am

spending my time,
as the saying goes,
watching until the watching turns into feeling,
so that I feel I am myself

a small bird with a terrible hunger,
with a thin beak probing and dipping
and a heart that races so fast

it is only a heart beat ahead of breaking------
and I am the hunger and the assuagement,
and also I am the leaves and the blossoms,
and, like them, I am full of delight, and shaking.

Thursday, May 5, 2011

Lost in Translation

Easter morning, on the way home from church -

Keith:  So what all do you have to do to get ready for Easter dinner?

Me:  Well, that's kind of a loaded question.  What exactly is it that you want to know?

Keith:  I just asked what you have to do to get ready for Easter dinner.  Why are you acting like I have ulterior motives or something?

Me:  Keith, there's a lot in a question like that.  Are you asking what I need to do to get the kids ready for Easter dinner?  Are you asking me what I need to do to get the house ready for Easter dinner?  Are you asking me about the food itself?  What specifically are you trying to ask me?  Because I could go on for two hours about what all I have to do to get ready for Easter dinner.

Keith:  Look, all I wanted to know was if you needed any help when we get home before I leave to go see my dad.

Me:  Well, okay.  No I don't need any help.  But do you see what I mean?  Asking if I need any help before you leave is a lot different than asking what I have to do to get ready for Easter dinner. 

Keith:  Sigh

Lately, this seems to be the way our conversations go most of the time.  Keith and I have gone from a couple with excellent communication skills to a couple struggling just to understand one another.  I'm not sure if it's the disease itself or the medication, or maybe a combination of the two.  Difficulty in communicating effectively is a problem faced by many PWP, and sadly, it is one of many reasons why PWP are often viewed as being stupid, or as one rude person said, "bumbling idiots."  This article from e-ParkinsonsPost, is an excellent source for why communication proves so difficult.

 In Keith, I see a little bit of everything, with Language Structure topping the list.  Often, he only speaks half a sentence but expects me to know what he is saying.  He readily admits that many times he barely expresses a thought, with the expectation that we will automatically know what he means.  Another problem topping the list is Emotional Processing.  This is a biggie and almost tied for the number one spot, mainly because it's such a huge issue for me.  A few years ago, when Rielly-Anne was just beginning to talk good and understand a lot of what was going on around her, and when Keith's facial masking became a little worse, we had a talk addressing how to deal with that around the kids.  We decided that the best thing to do was for Keith to over-exaggerate his voice and facial expressions so that there would never be any doubt in the children's minds how their daddy felt.  Somehow that didn't translate to mom needs it too.  Maybe it's because I know the disease and what it does to him; I know all about facial masking, hypophonia and dysarthria, and as an adult I am able to understand that if Keith doesn't smile at me, it's not because he doesn't love me, only that right now, he physically can't.  Well, that's what you'd think, anyway.

Nearly everyday when Keith comes home from work I ask him the same thing - How are you?  And every time I ask he says one of three things - beat, tired or wore out.  Lately, my reply to that has been , I know that.  Other than that, how are you feeling?  Simply put, mama needs to see the love too.  Keith rarely over-exaggerates his voice or facial expressions for me.  His blank, frozen, facial-masked face is pretty much identical to his pissed off face.  The last thing you want your husband doing as soon as he walks in the door is giving you a pissed off look.  Technically, I know why he's doing it.  Emotionally, I just want to see his face light up sometimes.  Keith has difficulty emotionally expressing himself, and I have difficulty reading his emotions.  When you add all that to the problem of having difficulty with something as simple as putting together a sentence, it makes for some pretty tough situations.

Then there are those times when Keith does add emotion or facial expressions to what he says, but that can cause a whole separate issue of misunderstanding.  Sure, he can force a smile or feeling into his eyes when he speaks, and he can put emphasis on his words and take the time to put those words together, but that still doesn't guarantee that all those components will come together, forming a perfectly understandable and correct train of thought.  For example, just yesterday I got out of bed earlier than usual to sneak off to the Y for a quick workout.  Keith was already up when I came downstairs -

Keith:  Wow!  You got away from the baby and out of bed without waking her up! 

Me:  Yes.  I've done that lots of time. (I was thinking he had forgotten due to memory issues, yet another blog post!)

Keith:  I know you've done that lots of times!  I didn't say that because I was surprised, I said it because I thought it was good!

Me:  Oh.  Sorry!  You said it like it was the first time I was able to get out of bed without waking her.

Keith:  Well, that's not what I meant!

So you see, even if the words and facial expressions are there, it doesn't necessarily mean that they will be interpreted correctly.  He spoke the right words, but his inflections, emphasis on certain words, and facial expressions led me to believe that he thought this was a first-time thing.  Unfortunately, almost every thing Keith says anymore I must take a moment or two to really try and understand exactly what it is he is saying, or trying to say.  I have to admit, sometimes when I am busy or preoccupied with the children I don't take that time like I should, and that usually results in a huge miscommunication, and often some one's hurt feelings. 

Yes, we are lost in translation, but all is not lost.  Thankfully, we have done a lot of research, we have a great specialist, and some great family and friends who understand.  So next time if you happen to be at the bank, or at work, or at the grocery store, and someone is speaking to you in an unintelligible manner, don't automatically assume he's an idiot - he just might be my husband, lost somewhere in translation.