A Day with Parkinson's Disease

Typical day in life of this 6 year PD patient

I slept during the night from 10 pm till 7:00 am waking up along the way at 1:30 and 4:00 am for trips to the bathroom. My cane is near the bed so that I can reach it in the semi-darkness.

At 4:00 am, however, the bedroom curtains turned into unknown creatures although they didn't prevent me from going right back to sleep. I've been visited like this before. These minor hallucinations which are actually illusions which my mind misinterperts from the room furnishings occur occasionally to plague me.

I stopped getting the bad, heavy duty hallucinations, the side effects of Mirapex and Selegiline when I discontinued taking them three years ago. Back then I saw and heard people, conversations, things that might have been but weren't. I thought they were gone for good but still every once in a while I have the illusions. Often I'll lie in bed for an hour thinking about our bills, medical insurance and work which needs to be done on the house and fall asleep.

7:30 am - I wake again and awkwardly dress myself, letting Marge sleep a bit longer. She is usually up and back at the computer after feeding the cats and dogs but not today. I make myself a giant cup of coffee - it's PD medicine too - and carefully climbed the stairs to the 2nd floor where we have our office. I still need to put up the hand rail for those first three steps. I have all of the parts but I am afraid that I may no longer have the ability. I should have done it years ago.

9:00 am - I am taking my meds and working on my plan to deal with my constipation. I will drink a lot of water and eat some fruit...and hopefully some chocolate - hidden by my wife so that I don't overdose. This problem goes with Parkinsons for most people, but since I went on the low-gluten diet about a month ago it's gotten worse. I made a promise to give the diet a fair chance - 90 days - so I have to stick with it for now. More fiber may be the best solution but chocolate does help.

10:00 am - Supplement time. Between the supplements and meds, I open 25 different bottles every day, most in the morning, a few more in the afternoon and some before going to bed. When I'm going out I take the afternoon pills with me. Our current health plan mails a renewal reminder well in advance so that I am no longer rushing around when I realize that I am near the bottom of the bottle.

10:30 am - I've read my email and now I'm going to take a shower using my latest PD addition: a shower/tub seat. I find it a bit difficult to negotiate my first leg past the seat but the other leg is no problem. It's going to take practice until I become comfortable. We'll probably add a grab bar to the side of the tub. I don't want to fall, the tub is cast iron, but then, that's the point: the plastic seat will protect me. I have only had one minor fall since my PD diagnosis and that was in my bedroom not the bath. I take my first shower siting in a shower seat and even though I know I need to, it makes me feel like an old, old man.

12:00 pm - 6 days a week I go to a therapy center where I workout on Nautilus machines for an hour and/or sometimes swim. It is here and at my monthly support group where I meet other people who are suffering from Parkinsons. Yesterday I shared my feelings with Danny, another PD patient whose PD is more advanced than mine. Danny gets around pretty well with a walker, he just needs some help getting started. We sat side by side riding recumbent bikes and talking about how much we missed our jobs and the friends we had worked with.

When we leave the therapy center we try to run an errand or two but often I wait in the car because I am not comfortable walking in crowds of people.

5:00 pm - I have a no or low-gluten dinner. I want to keep active so I try to be working on at least one blog article at all times as well as keeping up with the vacuuming, checking on the painters, cleaning my bathroom, and whatever I can do around the house.

Unfortunately when I am feeling depressed it's hard to do more than sit right here reading the news online or on TV. I try to watch Jeopardy ever night, I know it is good for my brain. And then I spend the rest of the evening alternating between entertainment and reading about more PD developments.

HAPPY NEW YEAR

I've been diagnosed PD for 5 years now. It seems to be the tremor dominant variety of the disease, although an aunt also had PD, my Great Grandfather had a neurological disease then called senility and lastly my mother has something now being called old age previously called Alzheimer's disease. So it could just be that I have genetic PD with an exposure to pesticides in my childhood and again as a young adult (gun-trigger.)

My PD started out with loss of sense of smell and foot dragging, as well as a discrete tingling pain in my body and arms. After a year or two I started having a left arm tremor when I felt emotional: either good, bad or stress. Some times in a very stressful situation my arm would shake a lot but mostly it is a very gentle hardly noticeable hand tremor.

Before I was DXed I was pretty sure what I had so I started taking COQ10 450mg/day. After I was DXed, my neurologist had me increase the COQ10 to 1200mg/day. He also added Amantadine 200 mg/day. Eventually he had me add Mirapex and Selegiline. At this point I started having very complicated hallucination's and vivid dreams. I didn't get obsessed over gambling like many PD patients but I started thinking about women obsessively.

Meanwhile I experienced several symptoms that were new to me, double vision, swallowing difficulty , occasional difficultly speaking,stiffness in my left arm and greater rigidity in my whole body. About a year ago I started using a cane because of the pain my arthritis was causing when I walked.

After my neurologist moved away my Kaiser health plan sent me to another neurologist who told me the hallucinations I was experiencing weren't too bad and that I should "learn to live with them." He thought it was a trade-off worth trying. (Easy for him to say!) When I refused to go along with that he had his assistant try to convince me that Levodopa was my only other good alternative. I changed neurologists again and was prescribed Azilect 1 mg/day and added Dynacirc 10mg/day.

That was about 1 1/2 years ago. Since then I have added Turmeric 1200mg/day for my PD and osteoarthritis. Turmeric is a powerful herbal anti-inflammatory whose main component is curcumin, the significant ingredient. I also began taking Glutathione with NAC (N-Acetyl-L-Cysteine) as a sub lingual 450mg/day accompanied by Milk Thistle Extract.

My present condition is pretty decent considering. Biggest problems are sleeping, stiffness and rigidity, pain in left knee, cane dependency, depression and having a feeling of foreboding about the future.

As we go into the new year I plan to try to eliminate these problems by tyring new approaches or continuing ones that have helped. Massage therapy has helped reduce my stiffness very much, as has aqua therapy. I've started using the Nautlis machines at the aqua center and I will continue that in the new year. Massage with aqua therapy has been making my knee less painful, so I've started to wean myself from the cane.

You may have noticed I haven't called any of these things New Year's resolutions. I don't have a good track record in that department...check with me in a month.

A Good New Year to All,
Stephen

What I Did When DynaCirc Wasn't Available - so glad it's back for my PD

While I just take a few medications and supplements for Parkinson's disease: Azilect, CoQ10, Creatine and DynaCirc. Azlicet has been proven in a large trial approved by the FDA to slow the progression of PD. DynaCirc CR is in trials now. Preliminary testings shows it either slows or stops PD progression and possibly grows new neurons as well.

DynaCirc is a calcium channel blocker of the Dihydropyridine subclass used mainly for blood pressure control but it has an open label that allows it to be prescribed for other treatment like PD. I've been using it for more than a year.

When I first started taking it I immediately noticed certain improvements. My swallowing difficulties and voice pitch problems were eased. Friends asked what had I done to improve my voice so much. Although I stopped taking Mirapex and Selegiline, my tremor actually improved a little; I still had a tremor when I felt emotional. My left arm still didn't swing naturally when I walked. My fibular brevis muscle and the associated flexor tendons continued to pull my toes up in my left leg when I walked or lay in bed.

But I felt good. I didn't think I was getting worse and just maybe I might be getting a little bit better.

Because it had happened before, I wasn't surprised when I went to Walgreens to get my Dynacirc prescription refill at the beginning of July and the Tech told me they didn't have any Dynacirc but would get it from another Walgreens and have it for me the next day. What surprised me was the next month, August, when they told me that they had none and neither did any other Walgreens. They suggested I talk to my doctor about a replacement drug. I was told that their supplier was out and they didn't know when it would be back in stock.

When I talked to my MD he looked at the schedule D calcium chanel blockers which are the only options on the Kaiser list and chose Amlodipine from the three listed. I started taking that medication on August 28.

After a few days I began to feel less coordinated, less balanced; my voice was regressing as the muscles in my throat tightened, the trouble I had swallowing was back, my body felt very stiff. I thought these were just side effects from the new medicine; I thought I would get used to it.

After about a week I felt so stiff that I could barely get out of my wife's car. It seemed as if the PD was progressing at a rapid pace each day. After another week I started thinking about what was different: treatments? medication? Then I realized I wasn't taking Dynacirc any more; now I am taking Amlodipine and that was when the deterioration had begun.

I emailed my medical situation to a friend who works in a research lab at local university medical center. In less than an hour he emailed me back that " Amlodipine was an unfortunate choice" as it does not go through the brain blood barrier (BBB). That meant I hadn't received medicinal benefit from the Amlodipine which would affect my PD or did it mean that Amlodipine just didn't work as well for me. Subsequent to posting this article I learned that aplodipine does cross the blood brain barrier. So I guess it wasn't the medication for my Parkinson's symptoms.

We posted a chart of Calcium Channel Blockers which cross the Blood Brain Barrier on 4/4/2010.

I called my MD and had the names of the two calcium channel blockers that go through the BBB ready for him: Nifedipine and Felodipine. I'll start taking Nifedipine (Nifediac) tomorrow morning. It is a generic and considerably less expensive.

2/05/09 note: Dynacirc CR has been back on the market since November 2008
The lesson learned was that if a med you are taking is unavailable - an unusual situation - that you need to ask what about it worked for you and why. Then you won't waste time and possibly jeopardize your health taking a "substitute" which won't perform in the same way.

Additional note: When I switched health insurance we had to go with a generic unless a specific prescription was submitted by the prescribing physician.  I briefly tried Isradipine, the generic version of DynaCirc.  Among other issues with taking this generic was the fact that it was not a controlled release.  Even taking 5mgs 2X a day was not the same. I wrote about my isradipine experience on 2/08/09