Health & Beauty Tip # 9 : Unveiling the truth behind Visual Problems in Parkinson’s Disease – By Dr. De Leon

Thank you to Dr. DeLeon for describing my vision issues so well.

defeatparkinsons

At least 2 years before my Parkinson’s diagnosis, I began experiencing difficulty with night vision particularly in depth perception which progressively got worst thus making driving at night not only increasingly more cumbersome but also more hazardous. Of course being a neurologist my mind went immediately to a differential diagnosis including rare disorders like Refsum’s Disease known for its accumulation of long chain fatty acids which leads to night blindness.

But never was PARKINSON’s DISEASE in my differential – well at least not idiopathic (cause unknown) regular garden variety PD! YES! Several Atypical Parkinson Syndromes or Parkinson Plus Syndromes ( e.g. PSP – Supranuclear palsy known for its limitations in vertical gaze causing patients to frequently trip on side walk or drop food on their shirts, or CBGD – corticobasalgangliadegeneration which is known for having visual spatial problems- not recognizing a part of your body as your own!)

Never really…

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Measuring Anxiety

I’m still waiting to discover the results from my blood work and MRI.  I actually told myself that I was doing pretty well  dealing with the anxiety about it all.

And then, the email came.

My neurologist has my family practitioner’s name and contact information and sends her lab results and such.  And because my family practitioner  has a very sophisticated computer system, the lab results go into a personal patient account and the patient receives an email informing him/her that the results are in.  So that’s the email I received.

I was frozen.  Really.  My heart started racing and I couldn’t figure out what to do.  I had imagined that I’d find the results at my next scheduled neurologist appointment or earlier, if the results were bad.  But I never imagined that I’d be alone in my house, clicking on an email that would reveal  (possibly) horrible news.  After pacing a bit, I finally called my husband and told him what had arrived.  What should I do?  Did I want to find out this way?  Of course, he didn’t know.  He offered to come home to be with  me while I looked, an offer that made me stop and put on my “big girl pants”.  I decided to call the neurologist’s office and tell them the situation and ask what I should do.  Great idea, right? Not so much.  She gave me a non-answer saying the doctor would call when he’d processed the results himself.  Oh, and my call is very important to them.

So I’m alone, I’ve told my husband I could be mature about it.  I sat and stared at the screen.  Finally, I just did it.  I clicked and followed the links to lab results.  And there it was.  MRI.  And nothing else. That’s it, other than the date.  There was no processing, no physician’s comments, no anything.

Anxiety.  High.

A Parky Week For Me

I haven’t posted in awhile.  Life has been overly full and busy, mostly positive but some sad and frustrating, and alot of on-the-road time.   This week, though, looks to be a Parky week.  On Friday, I go back to my doctor for an evaluation. The office has lots of paperwork every visit, asking you to list and scale your various symptoms.  This isn’t so easy.  I’ve had more headaches than usual this month.  Related to Parkinsons?  Early fall allergies?  Something else?  And if I can’t think of enough, they have their own list to consider:  tremor?  rigidity?  slowness? dyskinesia ? posturing?  shuffling? constipation?  hallucinations?  sexual dysfunction?    These always stop me cold:  Is this the list of what I look forward to?  But I am proud that I’ve managed to not change or add any medications for awhile and I hope that he feels that can continue for awhile.  I’m also taking him information on the US Marine Corps tainted water studies (see earlier post) because he has expressed an interest in environmental impact  on Parkinson’s patients.

I want to be like these people.

I’m not so excited about the doctor’s appointment, but I am excited that today I am going to my  first tai chi class.  Sponsored by the local Parkinson’s group, this class is just what I’ve been looking for.  I bought a DVD and tried it at home myself but I think I’ll get more out of the class.  Tai Chi has been shown to improve movement, walking and balance and to increase ankle strength.  I already go to a gym 3 times/week to use the bike and work on cardio, and a water class to build strength twice a week.  Tai Chi is only once a week so its a perfect addition.

I hope everyone is doing okay.  I carry your stories in my heart no matter where you are on the caretaker/Parky fence.  Cross your fingers the week works out for me.

Thursday Thoughts

If a tree falls in the forest, does it make a sound?

Does a blog no one reads serve a purpose?

I have really enjoyed blogging and have learned quite a bit about Parkinson’s that other people aren’t willing to share from the various blogs I’ve read.  But I haven’t posted regularly, and for whatever reason, I haven’t attracted followers.  This isn’t an offense against my vanity.  I just was hoping to have a conversation.

If you are gifted with Parkinson’s, too, and want talk about daily challenges, future planning and the humorous side with a dose of philosophy and religion for good measure, comment and let me know you’re there.  If not, I’ll look elsewhere for what I’d hoped to find.  And, regardless, if you’re reading this, I wish you all the best.

Gotta Love a Day Like This

Happy Day!  All the meds did their thing at the right time, no “off” times at all.  I even pushed myself a bit physically to walk farther than usual.  I was with family, my sister and her son.  She knows my situation so I don’t have to fake it.  I’ve been trying to stretch the time before my next neurologist appointment.  It seems like almost every time I go to see him, the most typical step is an added dose or an added med and they all have some side effect or period to get used to them.  I’ve had a few days lately that made me think I might not make it as long as I hoped.

But then I had today!  My energy level is still good and its definitely given me some hope.  I do find that sometimes, days that are busy or have distractions help me keep going but it doesn’t always work that way.  So I celebrate today with red wine and chocolate – the perfect end to such a great day.

A Clue on the Way Forward

I mentioned in the last post that I am trying to find a philosophy or some structure to address a life that I now know will be a challenge not just to me but to my  husband and family.  I’m sure he meant to be positive, but the doctor who gave me my initial diagnosis told me not to worry, because people lived as long as 20 years with PD.  For me, the clock immediately began ticking; I’m now down to 17 years.  Now, I know that I could also get hit by a falling drone tomorrow.  There are no guarantees.  But I want to live in a way that will make me proud to look back.

Now, I had said that I didn’t want a self-improvement project and I don’t.  But while reading The Happiness Project, I found something that hit a nerve for me in a positive way.  The author, Gretchen Rubin, wrote a blog about her project and invited responses.  Some of the comments were included in her book.  This comment stopped me cold.  I read it again.  I felt it might contribute to my outlook, so much so that I took the time to learn how to highlight in my Nook.  The  quote is as follows:

Before the catastrophe, not after!  After was too late.  I was waiting to die, but I didn’t die, God isn’t ready for what little there is of me yet.  Now I see that it’s like saving money, you can’t save for when you get laid off, after you get laid off; rather, you have to save while you have a job and the money is still coming in.    Life is like that, you have to DO while you are able to think of what you want, what you like, what needs it will fill, how it will enhance your life, how it will help you to maintain you, so that you have some reserves when crunch time comes.

– from The Happiness Project
by Gretchen Rubin

I love this!  Its the first thing I’ve read which allows for rational steps forward.  It allows for me to plan ahead.  What will I be happy that I did when I could?  I don’t have a huge list but some things come to mind.  I want my husband and my children to have no doubts about how much I love them.  I haven’t finished yet but I’m looking for occasions to write each (letters last) and affirm my love and my pride.  When I can’t scream it out loud and grab them for a big hug, I want them to have proof.  It has to be over time; it’s less sincere and less special if everyone gets one at the same time.  I will be happy to know they have these.   Reading that blogger’s insight also gave me the courage to speak to my husband in a realistic way about looking forward to a time we’ll need a one story plan.  I must have done it in a positive way; yesterday, he made a game out of looking at houses that would suit that were nearby.  Its not something we need to do now which is good while we pay for college.

So there’s step one or maybe the first brick in the construction.  I need to bounce back to the faith issue next time.  Thanks for reading.

Behind the Clouds is the Sun Still Shining

Today, we learned that former President  George H. W. Bush has been diagnosed with Parkinson’s Disease.

Earlier this week, we heard  that Jack Osbourne, son of Ozzie and Sharon is fighting  Multiple Sclerosis. He joins Neil Cavuto, Ann Romney and  Montel Williams in the struggle.

Halle Barry must deal with her diabetes.

Nick Cannon has lupus.

Bret Michaels has the challenge of heart disease along with diabetes.

Lucille Ball had rheumatoid arthritis, a very painful auto-immune disease.

 

President John F. Kennedy had Addison’s Disease.

 

Michael Douglas had a brain tumor and cancer.

And, of course, Michael J. Fox has Parkinson’s disease.

There are health issues in my family; I have Parkinson’s disease.  So does my father.  My mother has quite a few auto-immune diseases ( including rheumatoid arthritis, peripheral neuropathy, and sjogren’s syndrome ).  One sister has epilepsy, the other has a blood disorder,  Many families are like mine, suffering from a variety of health issues.

 Obviously, celebrities are not immune from this.  All the fame in the world doesn’t protect your health, or your family’s health.  In fact, it seems to me that there is an expectation that is put upon them.  From the time of diagnosis, they have a limited amount of time before “the story” is sniffed out by  the press and “the story” drowns out much of the privacy one might want when deciding how to face your challenge.  It seems to me that there’s almost now an expectation of how you should behave when diagnosed: 1) Go public.  Here preference is for appearing, teary eyed on a morning talk show but showing you’re battle ready.  At some point, you allow an interview by some celebrity magazine about how you’re handling the fight.  Once you are over the initial shock, you are the “face” of your disease and you are expected to support its named charity (Heart Association, Breast Cancer Run and so on).

Michael J. Fox, it would seem, set the expectation by how he (eventually) went public with his disease.  While you could argue he became a “face” of Parkinson’s , no one can take away from him what he achieved with his foundation, the Michael J. Fox Foundation.  He approached it intelligently and didn’t just throw money at the problem. From what I read, he is involved in decision making, including knowing when to trust someone more knowledgeable than himself.

What is the point, then, of today’s post?  I am just struck by the difference in how disease affects the lives of the famous.  How they lose what little privacy they may have is something I don’t have to face.  On the other hand, they can afford the top doctors and the cutting edge treatments and we all know how many other people are bankrupt because of their medical bills, who can’t afford their needed care.  I have a relative with heart disease who needs a particular surgery badly, but is home saving up for it.  A small business owner, he is self-insured and can’t afford it yet. When it comes to health, we all have our challenges.

Be still, sad heart! and cease repining;
Behind the clouds is the sun still shining;
Thy fate is the common fate of all,
Into each life some rain must fall,
    Some days must be dark and dreary.
– Henry Wadsworth Longfellow

Not “Me – Why?” But “Semper Fi?”

I went to hear my neurologist speak at a symposium last week.  A question or two came up about genetic links and Parkinson’s disease versus environmental factors, such as Agent Orange exposure (for which the military now gives 100% disability benefits).   The doctor explained that while there are some populations which have clear genetic links for Parkinson’s disease (PD), there is another way as well. It is possible for many people to carry a gene recognized for PD and never actually have the disease.  In the same way, it is possible to have no genetic predisposition but be diagnosed after being exposed to an environmental factor which causes Parkinson’s.

This brought up a question from me.  My father had been in the military and I had been the typical military brat who moved around quite a bit.  One of our homes had been at Camp Lejeune, NC, of which I personally have some lovely memories.  But apparently, they have discovered that there was tainted well water which supplied some of the housing there and many, many people have contracted diseases In all,  more than 750,000 Marines and military family members who lived on base at Camp Lejeune during the three-decade period in which serious contaminants, including chemical degreasers and organic solvents, seeped into the drinking water on base..

I asked the doctor if he thought there was a value in participating in the study.  After all, my whole family (mother, sister and I) have neurological or auto-immune diseases.  My father has PD as well but it is assumed his is from Agent Orange exposure during his two tours in Viet Nam.  The doctor’s answer surprised me by its definitiveness.  “Yes, absolutely”, he replied.  He said that tainted well water has been found to be the most common environmental agent for Parkinson’s.  If we joined the study, we would help give the investigators a more accurate view of the “bloom” of the exposure.   This blog is entitled, “Why not me?” and starts by explaining my acceptance of my Parkinson’s.  The only thing that concerned me when I was diagnosed  was whether it was a gift I was likely to give to my children.  Through participation in 23 and Me’s genetic study, I learned that I actually have a low likelihood of having PD or passing it along .  Because you do have to laugh, I’ll share that it also indicates I have a higher than average likelihood of becoming addicted to heroin.  Many a youthful discretion was committed by yours truly but heroin usage was not one.  Anyway, I, of course, would love to know a likely cause.  It’s strange but I’ve wondered – was it my mother’s fault for making me clean the bathrooms every Saturday with copious amounts of powdered Comet?  Was it the chemicals I used to clean my house as an adult?  Was it, in fact, those “youthful indiscretions” over a year or so when I was 16 that did the damage? This is the curiosity, the self-doubt that makes the Camp Lejeune history seductive.

In researching for this post, I discovered that the government sent out health surveys to certain categories of people who lived on base during this time and to some people who had just been earlier in gaining knowledge of the link.  The cut-off date for the survey was June of 2011.So its too late for me to get in on that but its not too late to follow up and see what the results are.  If you, like me, spent some time in the ‘60s and ‘70s living on base at Camp Lejeune, and you want more information, I found a good starter link at the government’s CDC (Center for Disease Control) at http://www.atsdr.cdc.gov/sites/lejeune/background.html .  For information from the affected families’ side, go to http://www.tftptf.com/5801.html .

Gotta Laugh

One thing I’ve encountered is that people who don’t have PD don’t like you to joke about it.  In fact, it can be perceived as rude to mention it.  Example one:  I had put off having a certain physical exam for 5 years past when it’s first recommended.  It wasn’t the procedure I dreaded.  My husband had had it and I knew it wasn’t that bad.  Oh, no.  But it was the prep work, drinking the sweet, syrupy liquid , which even thinking about triggers my gag reflex.  And, then, the result:  cleaning out your intestinal system.  But I finally decided to bite the dust and get it done.  When it was over, the doctor came out to let me know that I had nothing to worry about, and to come back in 20 years.  I laughed and said that this was the final one for me – I don’t have to worry about 20 years from now.  I looked around and noticed my doctor and my husband were taken aback.  The laugh came but slowly and awkwardly.  Move forward a couple of years, discussing the same exam with PD friends.  I made the same kind of comment, noting that there had to be some positive sides of having such a disease.  Instant laughter.  You’ve got to laugh; what’s the alternative?

Its easier for me to look at the humorous side of life – its just the way I am.  Apparently, some studies lately have shown that people with Parkinson’s tend to have a sweet tooth.  Primarily, chocolate is the main craving and the explanation may be that it contains anti-Parkinsonian and dopamine-releasing ingredients.  Hurrah!  Now, if they could just investigate and find similar attributes in a good glass of Pinot Noir – is that too much to ask?

I went to hear a Parkinson’s specialist speak last night.  He made a comment at one point that he’d love to have more homeopathic treatments for Parkinson’s than prescriptions.  I am anxious to have a chance for follow-up to ask if there’s any he’s found useful yet. Homeopathic treatments I’m hoping for:  Bailey’s Irish Cream, back massages and Ben & Jerry’s Coffee Heath Bar Crunch.  Oh, and Pinot Noir.

How Much Should Loving Someone Cost You?

But what he doesn’t understand is that my chains are not chains,  that over the years Sally’s crippling has been a rueful blessing.  It has made her more than she was; it has let her give me more than she would ever have been able to give me healthy; it has taught me at least the alphabet of gratitude. Sid can take his guilty satisfaction in my bad luck if he pleases.  I will go on pitying him for what his addiction has failed to give him.

-from Crossing to Safety by Wallace Stegner

This quote from one of my favorite reads is from a man contemplating his marriage to a woman who has been physically challenged for many  years of their marriage.  Its a positive attitude.  What we never really hear in the book is how Sally feels about the impact of her health problems on their marriage.  Did she, like me, feel the unfairness of strapping this particular burden on her fairly young and very healthy husband?  The title of this blog is “Why not me?”  but that doesn’t mean I don’t ask why he has to suffer, too.  My step-father decided that it was his mission to take care of his wife who had her own health issues.  The burden of her care took its toll on his own health.   My husband is a very good man.  He would be like the man in the book, or like my stepfather.  But knowing how this ends for me, I wish I could choose.  We face challenges in my health but also huge strains on our finances as we deal with medical care.  We’ve tried to prepare for those but I’d prefer not to drain the money he’s worked hard to put away for retirement. Being a caregiver puts physical stresses on a spouse and emotional ones, far beyond the financial burden.  I have an idea of how that retirement should look for this wonderful man.   I’d like to save him from that time when he’s no longer my spouse but, rather, my caregiver.

Do you deal with this?  Are you someone facing medical challenges watching the strain on your spouse?  Are you that spouse/caregiver?  This is the roughest area for me to resolve. “Why not me?” I get.  “Why him?” I struggle with.  I’d be grateful to hear from either side.