More Education Needed on Vision Issues with Parkinson’s Disease

The first time I realized something had really gone awry in my body, we were crossing the Connecticut River from New Hampshire to Vermont.  Looking out on the horizon, there were two of everything.  I was in the back seat at the time so said nothing and just wondered what that was all about.

But there was more, over time.  I noticed that my depth perception was off; when braking, I left huge gaps between me and the car ahead.  When my children were driving me, I’d tell them, “brake, brake, brake”, because they didn’t seem to be doing it early enough.  We finally settled on an agreement.  They would tell me, as they approached, that they saw the car ahead of them and were braking.  That acknowledgement helped a lot.   I also began to realize that from dusk on, I had a harder time distinguishing between objects.  That’s when I became a daytime-only driver.

Support from my medical “team”  was lacking.  My ophthalmologist, when told him I had PD, assured me I had no worries.  There is not impact on vision by PD., he said.  My neurologist did confirm  that Parkinson’s and its medications can cause double vision. He cut back on my Mirapax to see if that would help and then referred me to a “specialist”  who did only tests that my regular ophthalmologist also performed.  He did give me a prescription for prisms, which helped with the double vision somewhat but didn’t fully address the changes in my eyes,

A breakthrough moment for me was stumbling upon a blog post, reblogged on this site,  by Dr. Maria DeLeon, a retired neurologist who also deals with her own PD,  She so described my  exact vision issues.  I carried her article into my doctor’s office to show him since she explained so well the issue.  The depth perception problem had been an issue for awhile,but had improved with the introduction on Sinamet but I had never been able to describe the challenge clearly. The next big moment was discovering from another Parky that there are neuro-opthamologists who can help.  His doctor, whom he loved, doesn’t take my insurance so I did research and found one  at a nearby teaching hospital.   This doctor had such impressive credentials.  He was a fully trained neurologist and a fully trained ophthalmologist so really knew what he was dealing with.  I so recommend this if you have these issues!  He did an overwhelming number of tests, most of which no doctor had ever done on my eyes.I discovered that I couldn’t perform many of his tasks. You may have seen books as a kid where you are looking at a page full of colored circles and you have to find the letter, word or picture of contrasting colors within.  Nope, couldn’t do it.He diagnosed convergence insufficiency (reduced ability of the eyes to turn towards each other, or sustain convergence).and diplopia (also called double vision)  along with presybyopia (inability to focus on nearby objects but distant ones ware blurred )and myopia, the inability to focus on distant objects .  I left with a better prescription and more prisms for my glasses but my eyes continue to bother me. I return soon and hope to find out what else has changed.

Another source about eye and vision issues in Parkinson’s Disease can be found on the American Parkinson’s Disease Association website ‘

And Dr. Maria DeLeon’s blog page.entitled VISION is definitely worth a read.

 

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…

View original post 1,335 more words

Daylight Savings Whine

I was on the road at exactly this time a year ago, visiting friends and family.  Unfortunately, my medicines did not perform as well as usual. Someone suggested that maybe the time change (losing an hour to Daylight Savings Time) made the difference.  As I thought about it, I remember having an issue at another time change as well.

Maybe it’s because I’m very sensitive to my meds.  I know ahead of time when they are about to wear off, and I can tell as soon as they kick in.  One of the basic things you learn after a diagnosis is the importance of taking the prescriptions on time and on a schedule so that you keep a level amount in your bloodstream.  So maybe it’s not to far off to believe that making that one hour shift but I searched online and couldn’t find any mention of it.

Have you heard of this or felt it yourself?  I’d love to hear whether this is a fluke or an actual issue.  Thanks.

Life’s a Beach

Ahh, I lucked into the restorative powers of the beach this week.  Some friends invited my husband and I to a long weekend at the beach.  The November sun isn’t warm enough to sunbathe, but it was lovely for long walks, kites on the beach, watching sunrises and  breath-taking sunsets,  There was couple time and group time.  Overall, we head home tomorrow feeling renewed and ready to face all the holiday craziness that is waiting for us to cross the threshold.

 

 

This older gentleman had no fear of us at the dock. He just attempted to first stare us down and then to ignore us.

 

 

As the sun set over the Sound, and the clouds moved in, the sight was almost unreal. I didn’t think the photo would do it justice but I think it did.

 

As the sunset comes to end, we get this last breath-taking view.

An Exciting Step Forward

Long before I was diagnosed, I had held the belief that Parkinson’s Disease was an old man’s disease.  That was one reason I never suspected I had such a thing and why I was stunned when I found out I did.  I mean, everyone I’d ever heard of or knew who had it was a man and Michael J. Fox’s diagnosis was primarily surprising because of his age, not his gender.

One of the blessings, then, when I went to my first aquatics class, was to meet women like me.  The only problem was that there wasn’t really time to discuss the subjects that mattered.  We mostly belonged to the same support group but it was (and is) mostly, well, older men.  The topics of discussion had some issues I had but mostly were not relevant to me.  A couple of times another woman would mumble together, “There needs to be a time for just the women to talk.”  It’s not that the disease wears any differently on women that men.  It is unique to each of us, regardless of gender.

The difference is how it fits into the lives of women versus men.  Women want to talk about the increasing sense of dependence they feel and how to deal with that.  Explaining their disease to their children, regardless of age, is something they want to do right.  Parkinson’s Disease effect on sexuality is just more comfortable to discuss in a same sex environment.  I tested the waters at our most recent group meeting by asking, “Have any of you considered therapy?”  The only response was from another woman. Topics aside.  I  process important happenings, news and decisions by talking it out in large measure.  My husband does not but he patiently listens.  I don’t want him to have to listen to my every little concern about my Parkinson’s.  He’s dealing with enough of it already.  But another woman, who processes the same way, can be part of a sounding board with me.

After the latest meeting, I said again that there should be a women’s group. Two other women joined in with one offering her house for the first meeting.    I came home and researched the topic. I googled ‘women with Parkinsons’.  Nothing really there specifically talking to women.  I pulled out one or two of my Parkinsons books and searched the index.  The word “women” wasn’t there.   So I put a flyer together, explaining our reasoning, our goals and our contact information (set up a group-only email address) and handed it out to people I know.  We got immediate and positive responses,  some from people we’d never met who saw the flyer through emails. It was so exciting; we were off and running. Last week, the other “leader” and I sat down to discuss schedule dates, structure and format and possible topics, knowing that when we’re all together , some of that will change.  I’ve also set up at least a temporary website for our group and for dissemination of information from which other women may benefit.

One of the basics of our group is this:  only affected women may attend.  No spouses, no drivers.  It is the only way to feel really comfortable to talk about these topics critical to us all. I would continue with this group if no one came to the meeting but my “co-leader” and I.  But I see how hungry other women are for this and I’m so proud we took the steps to do this for ourselves.

I can’t wait for the first meeting in just a couple of weeks.

 

 

 

When One of Your Traveling Companions is a Neurological Disease

Welcome to the new brighter Why Not Me? site.  The other theme was so dark, I felt my posts went that way as well.

So the first post after the change sounds like a downer but we all try for a getaway in the summer months to a place where we find peace, recreation, great food, things to see with family and/or friends.  What we don’t find there are our regular physician, our regular diet or exercise or our regular schedule.  For me, exercise is important enough that I usually do some research before I go to see what my options will be.  The schedule change, though, often trips me up as far as medicine timing and I need to be especially aware.

One additional element for people with Parkinson’s disease is that stress can worsen symptoms.  So if your vacation is with people, who, though you love them, get on your last nerve, you might want to think about positive ways to handle that, too.

What have you learned that has made traveling with a chronic illness easier?  Have you found certain modes of travel easier than others?  Please share with me and other readers.  

Time, Motion and a Tinge of Self-Pity

I’ve talked about my water exercise class in other posts.  Its been great exercise but also a place to find people who, like me, are dealing with Parkinson’s Disease, either as affected persons or their spouses.  Its been educational for me, a source of encouragement when I see someone affected many years still have a productive life, a source of inspiration when I see the grace with which other affected people deal with the inevitable decline and support when others see I need it.  I have always been the youngest but not by much, and most of the others were great fun to be around.

I looked around at the pool last week and was struck with the toll time has taken with my class.  One woman’s decline has moved her and her husband into assisted living.  They haven’t made it to class in some time.  Another has been dealing with their own declining parents so have been too busy to attend.  One of my favorite couples moved to another city so their own children would be around them when they needed them.  Similar stories have moved others away.  The numbers have declined a bit but new people, NICE people have taken some of their places.

What has this changed for me? I feel I’ve lost a group of mutually supportive people facing a similar challenge. I found myself yesterday wishing for some new people in my age group or at a similar stage to me.  How awful!  I would never wish this disease on anyone for real.  So I’m writing this post to get rid of that demon and move on.

I still benefit from the class.  The instructor is kind and shows how to adjust the challenge to the individual.  But I’m mourning the loss of this community. It happened quickly and more widely than I would have thought.  Some have suggested it might be depressing for me to see what awaits me and they’re right.  But it makes me strong and helps me prepare not only myself but my family.

 

 

 

A Peek Into the Present

One of the medicines I take causes double vision in some people and I am lucky to be one of them.  When I have tried  reducing the dosage, I have significant pain.  Quite a conundrum.  Function with double vision or deal with pain.  By the way, I have been to a neuro-opthomologist, who added prisms to my glasses with limited success.  So I decided to try again slowly to cut back the drug in question.  For a short time, my plan seemed to be working okay.

What a surprise for me!  Two days into cutting the dosage in half, I woke up with full-blown Parkinson’s symptoms. They’re hidden most of the time, under control through effective use of available treatments.  But that morning, I got up, leaning forward and shuffling down the hall. I felt so off-kilter, in ways including but besides actual balance.  A weekend morning, the plan had been to go to the gym for awhile. Since I consider exercise as or more important than the Sinemet, I slowly got myself together.  My brain couldn’t concentrate so it took awhile.  I looked bad enough that my partner dropped me off at the door.  I sat at an exercise bike, hoping that the movement would help me gear up for the day.  I made it for almost 30 minutes when that other friend of PD, the sense of urgency, sent me off to the locker room.  When I came out, I walked through the fitness machines I usually use, found one at a comfortable setting and just sat. I sat there until we were heading home.

Feeling so bad on a bad weather day, I laid on the couch and stayed there quite awhile. I felt so dejected and depressed that I wept.  That was enough.  I waved the white flag and added that one tiny extra peach-colored pill back in my pharmaceutical regimen.

Now its four days later and I’m feeling much more like myself. My stride is unremarkable and the cane is waiting for the dust to find it. The bladder is back under control and my mood is back to normal. I’m able to effectively get to all my exercise classes.  I’m sharper and effective,  dealing with contractors doing work on our house, both inside and out.

But I’ve seen the present.  Its waiting there for me, worsening over time, just waiting to raise its shaky, unbalanced and ugly face.  It is me and I am scared to death of the time there is no next treatment, when one tiny peach pill won’t be all that’s needed to allow me a functioning life, when I’ll just have to accept that me in the future, too.

 

April is Parkinson’s Disease Awareness Month.  Learn.  Reach out.  Support.

Thanks!

 

 

How to Blow Things Out of Proportion

My last post detailed my “trapped in doctor world” angst, ending in wondering what my neurologist would have to say about it. I thought I had angered him on a mid-appointment call.

I decided to take the bull by the horns and bring it up for discussion.  My dear doctor had NO idea what I was talking about( The average US physician sees between 20-40 patients a day and this one hadn’t seen me in 4 months)  until I reminded him  The average US physician sees between 20-40 patients a day and this one hadn’t seen me in 4 months. Alot of people have passed through his office since he saw me last.  Its not that he doesn’t know his patients.  He ran into me in public, knew my name and introduced himself to my group by only his first name.  Classy guy.  But there’s a limit to what he remembers.  By the way, exam results were all good.  No changes, no changes in medication.

Note to self:  Future blog subject might be how bigt the ego of a patient.

Doctors, Doctors, Doctors

I have a wonderful neurologist  who takes good care of me.  Tomorrow, I have my 4-month appointment with him though, and I’m a little nervous.  No, I don’t expect bad news.  No, it doesn’t have anything to do with all the Obamacare damage.  His office is well-managed so I’m not dreading a long wait.  So what’s the problem?

I think I may have made him mad by misunderstanding something he did.   He’s very thorough and often sends me for quite a bit  of testing.  This last appointment was no exception.  He gave me referrals to two different specialists.  I went to the first one and found her office poorly run.  The wait was unacceptable considering I’d brought in the completed paper work , arrived 20 minutes early and there were no other patients.  She gave me a script to have lab work done at an outside facility.  After thinking about it for awhile, I called my GP’s office and asked if he could interpret the results for me.  If they were negative, I was done.  If they showed problems, he could give me a referral to another specialist, one, by the way, closer to my house.  This is what I did; the results were negative and that bit was done.

When I was at my GP’s, I mentioned being sent to the next specialist, an orthopedic surgeon.  I’ve had several back surgeries and was experiencing a very localized and sporadic pain there.  When I told him I was being sent to a surgeon, he suggested I start instead with a sports medicine doctor in his practice.  His logic?  Surgeons are inclined to do surgery and I didn’t want to be operated on again.  The sports medicine physician did x-rays and said my back was fine but he thought I should see an orthopedist based on reflex tests (we

aker on one side).  I told him that it wasn’t uncommon for people with PD to have a weaker side but he was insistent and wrote me a second referral for an orthopedist.

Since my concern had been addressed (the back looks good and the screws are in place), I called my neurologist to confirm that weakness on one side was typical and there was no need to keep going.  To my surprise, the good doctor also insisted that I follow through with the other specialist.  And he stressed the name that he had recommended.  This was a learning moment for me.  I had assumed that when doctors referred you to a specialist, that they just picked from a list a doctor that was near you and took your insurance but, at least in this case, he strongly preferred someone in particular.

Was I out of line?  Have you felt compelled to go to the exact doctor your own doctor recommended?  I will say here, that I am so grateful to be in an area with quality doctors nearby, enough to be able to have a choice.  Grateful also for my employer’s insurance plan which still exists so far and helps me with the cost of my disease.

If I have broken a code here about referrals, then I dread the moment he discovers that I rejected the other specialist, the one with the poorly managed office.   And I guess I owe an apology for not following his referrals precisely.  Or do I?

By the way, I finally got to the orthopedic surgeon.  Diagnosis?  I need to stretch my hamstrings more every day because they get tighter as we age and are directly related to your lower back health.  He never mentioned surgery; in fact, if the exercise works, I don’t have to go back.