What does Parkinson's Feel Like...Now

I thought that since my PD has advanced and my weapons against it have been upgraded, I should revisit the "What Does Parkinson's Feel Like" article.

Because of the DBS implant, i don't often have really bad symptoms, but sometimes...you remember that old Mickey Mouse cartoon where Mickey and Donald and Goofy end up in a giant's castle and Goofy falls into the Jello on the dinner table?  It was so funny to watch him struggle to get out of the gelatin, moving so slowly and getting very frustrated.  Well, that's what Parkinson's feels like to me sometimes.  Not so funny.  I try to walk faster and I simply can't.  I try to unscrew a cap from a bottle or jar and I move so slowly!  And then there's my face.  Mom always used to say "don't make faces; what if your face froze that way?" What if, indeed... I feel myself sitting there with an idiotic look on my face, usually an entirely inappropriate look, and it's very hard to change expressions.  I'm sure people must think I'm either a sour old lady, or a harmless, grinning idiot.  My voice is getting softer, my speech slurs like I've had one too many martinis.  I have too much saliva in my mouth, so when someone asks me a question, sometimes all that comes out is a bubble.  The fatigue is overwhelming, even if the other symptoms are under control.  Our house is deteriorating around us, i can't do more than about half an hour of housework at time, and since I'm still working full time, I'm usually not up for even that when we get home.

I know that I'm very lucky; the DBS is working like magic for me, and I shouldn't complain.  I'm just getting a little tired of the whole thing.  I need a cure.

If this is Parkinson's Disease, he can have it back...

It's all in your...neck.

Not everything is Parkinson's.  I have to keep reminding myself of this.  Remember when I said the pain in my neck, shoulders, upper back and arms was getting better?  It wasn't.  It's back, and worse than before.  I went to a bright young doctor in physical medicine, and he ordered xrays of my neck and shoulder.  My shoulder was fine; here's what the report on my neck said:

"Prominent degenerative changes at C5-6, primarily characterized by marked disc narrowing, endplate sclerosis and moderate marginal hypertrophic spurring.  Mild disc narrowing at C3-4 and C4-5.  Mild scoliosis convex to the left and scattered bilateral facet hypertrohy."

I, of course, had to look all this up to find out what it meant in English.  Turns out, the "C" numbers refer to the 7 vertebrae in the neck (cervical vertebrae). "Disc narrowing" (AKA "Cervical Stenosis") means narrowing of the channel in the vertebrae where the spinal chord goes, sometimes causing pressure on the spinal chord, which, of course can wreak havoc on your body. "Endplate Sclerosis" is a  thickening of the bone in the upper and lower ends of the vertebrae.  Why this is a problem, I don't know.  "Hypertrophic spurring" means bone spurs; growths of bone which sometimes impinge on nerves or the spinal chord or something which shouldn't be impinged on.  "Scoliosis" is a tendency for the spine to curve in the horizontal direction one way or another. "facet hypertrophy" is an enlarging of the facet joints of the spine sometimes causing pressure on adjacent nerves.

None of this sounds good to me, especially disc narrowing, which often has to be treated with surgery.

i thought my pain was parkinson's related.  Guess not.  It's all in my neck...

What a difference!

This is the first morning in 6 months that I have woken up with hardly any pain and no Parkinson's symptoms at all.  I went in to Stanford for a DBS adjustment last week, and not only did they adjust it so that the right and left sides of my body match, they also gave me the power of adjusting it myself a little bit.  I took advantage of this yesterday and bumped up the signal on the left side of my body just 0.1V (from 2.9V to 3.0V).  What a difference!  The pain in my neck, arms and shoulders slowly faded away.  Walking became easier.  Tremor disappeared entirely, rigidity melted to almost nothing.  I hope this lasts!

The Acid Test; went to Disneyland

We went to Disneyland for the first week of August; boy, what a test of my wellness and endurance!  I have a handicapped placard now, and the only time we used it was when we parked at Universal Studios on the one day we went there.  The rest of the time we walked.  We walked to the IHOP for breakfast, then to Disneyland and Disney's California Adventure where we walked all day, then we walked back to our hotel at night.  According to Bob's pedometer, we walked an average of 15 miles a day for 6 days!

And through all this, i felt great.  that's the bottom line; I have reached stability.  Thank goodness for medical science.  i can't imagine what hell people went through before we had medications and surgeries for parkinson's.

I'm feeling hopeful again. The physical therapy for my arm, neck and shoulders has been very helpful; in fact I "graduated" from PT this week.   Most helpful though, I think, has been Dr. Wasserstein's direction in taking medications.  He has me on a schedule, taking 3 Amantadine capsules a day, and now I feel great!

So here's that promised list of "Do's" and "Dont's" for communicating with doctors and their minions:

DO:
Keep a record of your symptoms so you can tell them when a particular symptom started, what it's intensity was as opposed to now, what you were doing at the time, what makes it better,what makes it worse, etc..

DON'T:
Don't exaggerate or belittle your symptoms.  Your doctor only has what you tell him/her to go by, when it comes right down to it, especially for neurological disorders.  What you tell him is crucial to your care.

DO:
Practice what you are going to say to the doctor before you get there.  I have even done this aloud while getting ready for work.  I find that even if I don't stick to the "script" entirely, it helps to remember issues you wanted to bring up, and it seems, for me anyway, to cut down on the intimidation factor.

DON'T:
Don't be combative.  I don't mean just nod your head and say "yes, doctor" to everything they tell you. What I'm saying is don't go looking for a fight.  If you're angry about something that they are responsible for, try to keep cool and explain your complaint in a rational way, and don't be accusatory.  Most doctors, it seems to me, get defensive very easily (scared of law suits probably) and then they stop listening.

DO:
Remember to thank the doctor and his/her staff for the job they've done (assuming they did a good job!)
I put together a card for my doctor with pictures of me and my friends at the Parkinson's Unity Walk, and thanked him for making this possible.  I think he really appreciated that.

DON'T:
Don't let yourself get rushed into not getting all the answers you need.  Don't say to yourself "well, he's too busy; I'll catch him next time".  Get your questions answered and your needs addressed now!

DO:
Be positive.  It always make the conversation more fun.

I haven't posted since the walk (which was great, by the way!) because I really don't like posting too much negative stuff.  I'm an optimistic person, and I believe in the power of positive thinking, but there are times in anyone's life that can be more challenging than others.  Since things are getting better now, maybe I can relate this story; it might be helpful to someone.

I believe I mentioned that my doctors at Stanford and I don't communicate very well.  When I went for my DBS adjustment on May 1, this became a real problem.  What they do is adjust the pulse width (duty cycle), frequency and amplitude (voltage) of the pulse train that the DBS stimulater sends to your brain.  Since last time the left side of my body came out better than the right,  this time they adjusted the right side of my body a little too much.  The result was some pretty severe dyskinesia on the right side.  I couldn't even walk by the time i got back to work.  For a long time, it felt like my right foot, ankle, knee, hip and arm were being pulled in different directions by some sadistic torturer.  The doctors told me I needed to cut down on Sinemet and Stalevo and Requip to combat this, and that seemed to help, but they didn't tell me how much to cut down and when.  You can't just stop taking Requip, for example; you have to cut down slowly.Also, I still had Parkinson's symptoms to deal with on the left side.

Meanwhile, i was getting tired of breaking things because my right arm jerked around at the wrong moment, and not being able to do any of my hobbies, and I could really do without the pain.  I called my doctors, i emailed, but because i mentioned that things were getting better slowly, they just said "good; see you in August".  I guess I didn't really make it clear how much I was suffering.

Finally, I went back to my doctor at Palo Alto Medical Foundation, the one who diagnosed me in the first place.  He's very good with medications, he knows me, and most importantly, he listens. He helped me cut down on my medications correctly and explained that the DBS implant should be viewed as a medication dispenser, essentially.  If you take a lot of medications with it, most likely you'll end up with the same side effects as you would get from too much of any dopaminergic therapy.

So now, i'm  on the Neupro patch, and the only oral medication I take is an occasional Amantadine to combat the dyskinesia.  the only pain I have left is in my neck and shoulders, and i have an appointment with a physical therapist to deal with that.

I guess it comes down to good communication, and I know that's my responsibility.  I plan to post a list of "Do's and Don'ts" for communicating with your doctor; let's see if I can follow my own advice, first!

Walk on Saturday!

This will be my last post before the Parkinson's Unity walk in NYC on Saturday, the 27th.  I will post pictures of the event itself here and on Facebook. I hope that anyone reading this who can donate will do so.  If possible, please support me and my team (The Castle Stormers) or just make a general donation to help find a cure for Parkinson's disease.  Thanks so much!

can you believe it?  Last night I was running around with no shoes on, and now I have broken toe.  PLEASE forgive my language, but @#$#$%^%&&&^^**&^^%$@!!!!  Now I have to walk the whole 1.4 mile walk with a broken toe!!!!!.   wait a minute; what am I  talking about?  At least I still have legs... Sorry; I feel bad for our whole species right now.

What's with my neck? A request for help

A new symptom has surfaced. When I'm "off", my neck seems to have a really hard time holding my head up.  I find myself looking only at the ground.   It becomes quite painful, though Gabapentin (Neurontin) seems to help.  When I sit at the computer,  I have to support my head on my hands/elbows to alleviate the pain.  The doctor says it's from working at the computer too much, but then why does it seem to get better when I'm "on"?

Anyone out there have this symptom?

Suffering and hope

For a while there, I thought I was never going to feel well again.  I was taking more medication than i was before, and having less 'on' time.   I am having a communication problem with my neurologist at Stanford.  She keeps telling me how i feel, and I keep telling her otherwise.  She doesn't listen to me sometimes.  She has all these charts and graphs and equations and algorithms that tell her how I am supposed to feel, but sometimes they are just dead wrong.  I am going back to my neurologist at Palo Alto Medical Foundation to see what he thinks.

All that being said, I suddenly started to feel better after my last "adjustment",  and now I have hope.  The doctor says that sometimes it can take a year to a year and a half to get it right.   Maybe  I just need to be more patient.

Bob and I are going to the Parkinson's Unity Walk in NYC on April 27th.  I can hardly wait!  Happy Parkinson's Awareness month to everyone!

Getting Better

I'm feeling better and stronger every day.  I have conquered the evil Mr. Nausea, and have found the secret lair of his boss, my nemesis, Dr. Parkinson's.  I am now doing battle with the infamous Dr. Parkinson's himself, using my new weapon; the DBS ray gun.

Meanwhile, in the real world...

I am feeling better every day.  I called Carlos and told him things were not working as well as I'd hoped, and he suggested I re-introduce my body to Sinemet (carbidopa/levadopa).  Just a little.  So, I did that and I feel pretty good, but I still think I need to "up" the voltage a little.  I'll find out on the 27th of March when I go back for my second "tuning".

It's a process.

Well, well.  That was harder than I thought it would be.  Turning the implant on and adjusting it was a  very interesting and tiring experience.  I had to be off my meds for one thing, and that is pure torture for me now.  I was so stiff and in so much pain!  They adjusted one side at a time, which meant that I was still in pain on the other side; very distracting.  They turned the voltage up slowly and waited for side effects to manifest, which, in my case meant dizziness.  For some people, it's tingling in the extremities, for others, one or two muscles start pulling on their own.  Others lose their powers of speech.  With me, if the voltage got too high, the room started spinning, and I started to feel disconnected from reality.  I then had to communicate this to the nurse (a very nice and patient young man named Carlos, with an engineer's understanding of how the implant was supposed to work and lots of experience in "tuning" people up).

I have been sick these last 4 days.  I mean sick to my stomach.  I think it's the Requip.  After all, I did stop taking it suddenly, then suddenly started again.  But for whatever the reason, I have been fighting nausea.  That is never fun.  So far this morning, it seems o.k. though.  Maybe I'm over it, and I can actually see how the implant is doing.  It's only just past 4:00 though, so we'll see when it's really morning....  Crossing my fingers...

Countdown to a new life

Just 4 days until my DBS implant is turned on and calibrated for the first time!  I can hardly wait, especially since my symptoms have returned, and I'm having trouble at work.  Sunday I have to stop taking Requip, Monday it's "goodbye" to seligeline and amantadine, Tuesday I have to quit the rest of the drugs (Stalevo and Sinemet) and then Wednesday I go in to be powered up and fine tuned.

I hope I can start cutting down on the meds soon, too.  I'm taking medication every 2 hours now; 17 pills a day!  And that's not counting the pain killers, muscle relaxants and sleeping pills for the insomnia that's probably a side effect of the OTHER drugs.

Soon I'll be free!  Well, "free er" anyway.  Sorry; my "dash" key doesn't work ever since I spilled a margarita on the keyboard.  Go figure.

Nothing but Blue Skies from now on...

Took a cruise on SF Bay on Sunday to celebrate Valentine's Day.  I just love these Hornblower cruises!  My older brother and his wife came with us; we laughed and drank champagne and ate too much.  We went out on the bow, because it was a beautiful day, and we watched the porpoises playing in the waves.  Bob and I even got one dance in!  Bob requested the song "Blue Skies" and led me to the dance floor, so happy I was walking 3 feet off the ground!

The road to recovery

I feel like Dorothy looking out on a technicolor landscape and saying "I don't think we're in Kansas any more!"

I didn't realize how sad I had become; I was just holding on for dear life and forgetting to enjoy the ride.  Now, it's a whole new world for me.

My first public appearance 

Got my appetite back

When we thought we were going to WIN the Superbowl; sigh... that was fun.

Deep Brain Stimulation Surgery; a visual diary.

A "before" picture; I was tired of long hair anyway...

just prior to having the fiducials installed; cutting off yet more hair.  This was perhaps the most traumatic part of the process, not because it was particularly painful, but there's just something weird about having a power screwdriver  used to screw something into your head

This was after I had the fiducials installed;  I returned home triumphant, but looking like I needed a fife or a drum to play.

I am Borg.  You will be assimilated.  Resistance is futile.

After the operation; what a train wreck!  You can't really see it here, but there's a double row of nasty-looking staples and other metal bits up there.

Felt kind of sick the first 3 days; I think it was the vicodon.  Couldn't eat a thing until I stopped taking it.

 Contrary to what I've heard, the operation was NOT painless, and I did NOT forget what happened, what I said and what others said.  Every conversation remains crystal clear in my memory.  Also, don't ever let anyone tell you that the brain has no nerve endings and so can feel nothing.  I felt something, all right.  I especially remember when the surgeon said he was going to irrigate it with cold water, and I felt the soothing coolness on my poor abused brain.  That's the bad news; now here's the good news:  I FEEL NO PARKINSON"S SYMPTOMS AT ALL RIGHT NOW!!!

"Auf Wiedersehn, Mein Hair"

It's my new Parkinson's weight loss program.  You too can lose 3 lbs. in one sitting!!!

Before

After

My new persona

Pre-Op Appointments; a busy, busy day.

Yesterday, I had various pre-operation activities to do in that huge hospital in Stanford.  First, we had a  briefing with the surgical staff in the neurosurgery department. After that, we were directed to hospital admissions to talk about financial things, logistics; stuff like that. Then we trudged downstairs to the lab where I had to go get blood and urine tests.  Then, I had to go to radiology for a chest x-ray.  We took a break for lunch, and then it was off to the Imaging Center which was in a completely different building downtown, where I had a brain MRI, which I actually slept through because I was so tired!  However, I was really, really impressed and reassured by the friendliness, competence and and professionalism of the doctors and staff at Stanford.

Through all of this,  Bob was my driver, my sherpa, my guide, my cheering squad and my best friend.  As he marched along uncomplainingly carrying my heavy purse and my heavy coat and all my paperwork, I thought: I am so lucky!  What would I do without him?  I would probably still be walking around the hospital, aimlessly searching for one department or another, for one thing.

I have to stop taking my Requip on Friday this week, then the rest of my Parkinson's meds on Thursday next week.  That, I'm really not looking forward to, but at least it will only be a short time without medication.  Next week, I will also be cutting my hair and getting a lovely buzz cut (like GI Jane), and then I'll be set for the shaving of the head and installation of the fiducials on Thursday, and surgery on Friday.  I only have a few days to wait before I start my new adventure as a "bionic woman"...

Wigging Out; Buying a Wig for After DBS Surgery

I have had long hair most of my adult life; sometimes very long.  So, when it became clear that part of the preparation for DBS surgery would involve shaving my head, I began researching wigs.  The idea of going around so "naked" was unthinkable.  I got on Google and looked up general information about types of wigs, pros and cons, etc.. Then, I got on Amazon and searched and searched for a wig that would suit me and fit my mental list of requirements: looks, comfort and ease of care.  Oh yeah; and price.  I'm very cheap when it comes to buying things for myself.
     Eventually, I found a cute little wig that was sort of my natural color, but much shorter than my real hair.  It was only $30 or so, so I was happy and pleased with myself as I clicked the "buy" button.
     When I received the wig, I was, well... disappointed.  It was longer than my real hair is now and quite heavy.  It looked too shiny and fake and the bangs reached down to my chin, which is not the way it looked in the picture. You get what you pay for, I guess.
     So I went to plan "B".  Found a local wig shop on the internet; The House of Wigs in Los Altos, CA, and went there in person to try wigs on.  Much better idea!  It was a small family business run by a mother/daughter team.  The daughter spent tons of time with me, trying on wigs and explaining how to wear them and take care of them.  I found a beautiful wig that is comfortable, easy to care for, natural looking, and best of all, looks good on me.  After I get my hair cut and I can wear it without all that long hair stuffed under it, I will post a picture.  The price tag was about $190 dollars, but it was worth it.  Heck, I've payed more than that at the beauty parlor.

Some things to consider if you want to buy a wig for post DBS:

• Make sure that the medical team you are working with really does want you to shave your head.  Some don't shave the entire head, and you may want to stick with your real hair, even with a few bald spots.  I asked my surgeon flat out "do I really have to shave my head?" and he said yes.
• Real hair wigs are more natural looking than synthetic, but they cost more and you have to style them, just like your real hair.  For some people, that is a plus, I know, but I'm too lazy.  You also have to wash them more often
• Synthetic wigs come pre-styled, and are easier to take care of, but of course the flip side is that you can't style them differently.  Also, you need to remember to keep them away from heat sources (camp fires, barbecues, hot ovens, etc.)
• Getting a wig is kind of fun!!  You get to change your "persona" a little without making it permanent.  My wig is much shorter than my normal hair, and is several shades lighter.  It's also layered, which is something I've always wanted to try with my hair.  I love it! It's taken away the dread of cutting off my hair and given me something to look forward to.