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.

Summer Can Be A SAD Season for Parkinson's Disease

Hear the Music of Life While Travelling the PD Journey

In the Northern Hemisphere 'tis the season of the year when it's normally easy to be happy and optimistic. The weather is fantastic. Beautiful flowers and trees have bloomed and budded. This year, however, optimism is not such a sure thing what with the global fiscal crisis, several countries threatening to use missiles or nuclear bombs. The weather is weird with earthquakes and other bleak natural disasters. Gasoline seems headed to new price highs while families are spread out all over the globe......and oh yes, those of us who had Parkinson's still do.

Parkinson's disease still isn't fully understood and there is no cure yet. PD is a disease where the only certainly is progression, no matter the speed. It's not just situational depression but depression as part of PD itself. And don't forget summer SAD. I don't think I am affected by it all the time, but when I am it becomes very hard to begin projects, organize or complete things.

I have learned a few things about countering depression: If you have sleeping problems deal with them first, you won't get very far dealing with any PD problem until you are sleeping well. Try to acknowledge the depression. Denial just makes it more difficult for you and certainly for your family.

As difficult as it is, continue to be social. From volunteering to joining an online or offline support group. Don't sit at home, if at all possible, get out to be with people you like, people with whom you can communicate or share an activity. You need to generate your own positive feedback for yourself. You need to affirm that you still have a place in the world.

Exercise as often as possible using exercises designed for Parkinson's. Since every PWP is different, it may not work for you as well as it did for me or it may work better. I work out one hour a day, 6 days a week. I use exercise machines, a program designed for my needs and my own personal routine.

When you begin exercise get your doctor's advice and even better, the advice and program of a good exercise therapist. Begin slowly, you will find your pace, plateau and then exceed it.

Make listening to music something you do all day long especially when you work out. Music and exercising to music whether on a machine, dancing or sitting in a chair helps restore some homeostasis to the PD brain. And Chocolate for you but not your pets.

Enjoy your pets. Get out in the yard to soak up the sun with them, talk to them, smile with them, pet them, let them love you. And do the same for the rest of your family. Join the rhythm of life.

COFFEE,TEA, OR ME, A PARKINSONS PATIENT

I'm going for a cup of coffee, I'll be back soon to enter this blog.

Since 2000 a number of studies have indicated that drinking at least 100 mg of caffeine everyday might reduce the incidence of Parkinsons disease. 100 mg isn't much caffeine, about the amount in an espresso.

Studies show that men who drink no coffee at all are five times more likely to develop Parkinsons. Other tests demonstrated that caffeine protected mice from attempts to induce Parkinson's. In 2001 additional testing on mice at Massachusetts General Hospital by Michael Schwartzchild disclosed that caffeine appears to prevent the loss of dopamine, the depleted neurotransmitter in PD by rendering the A2A receptor inactive which seemed to prevent further deterioration.

Caffeine seems to help protect brain cells from Parkinsons disease, a disease that causes progressive speech and motor difficulties. Other sources of caffeine: teas, chocolate and cola drinks showed similar results.

Besides being a stimulant, caffeine has other effects. It blocks two receptors in the brain, one of which helps us go to sleep and the other as identified by different research has a role in inflammation and Parkinson's.

Why caffeine affects patients differently is unknown. Whether caffeine can slow the progression of PD as well as prevent it is also not known. In a very recent study from the Mayo Clinic 1208 subjects were studied for lifetime coffee drinking history. The study targeted two genes one of which encodes the caffeine receptor activity and the other the rate-limiting process of caffeine metabolism. The results of the study were inconclusive.

Another study shows that caffeine protects men from Parkinson's but not women. A study at Harvard School of Public Health showed that post menopausal women who took HRT (Hormone Replacement Therapy) and drank more than five cups of coffee a day were one and one half times more likely to develop Parkinsons than heavy coffee drinkers who weren't on HRT. Women who drank only a little coffee and took HRT were 65% less likely to develop Parkinsons.

There has been at least one study which demonstrated that women who have had both ovaries removed signficantly increased their chances of developing Parkinson's by 50%. There appears to be a link to natural estrogen as a protector.

A study by Tel Aviv University failed to show any neuroprotective effect from caffeine in men or women.

From the Journal of the American Medical Asociation comes the 30 year result of a Honolulu Heart Program study from 1965-68 of 8004 Japanese-American men. The conclusion was that the higher coffee (at least 28 oz a day) and caffeine consumption significantly reduced the incidence of age-related PD.

In a study at Duke University Movement Disorders Center it was determine that in families predisposed to have Parkinson's Disease, those who were serious coffee drinkers and also smoked appeared to be less likely to develop PD.

Looks like I picked the wrong year to cut down my coffee intake.

Sources: Science Express: Leiden University: October 2008
Scientific American 5-08-01 Health
Science Daily 4-10-07
JAMA 5-24-00