From Michael J Fox Foundation: Exercising with Parkinson's Disease: Should It Be High-Intensity?

Posted by Nancy Ryerson, January 29, 2015 Exercising with Parkinson's Disease: Should It Be High-Intensity?

While any level of physical activity can be beneficial for Parkinson’s disease, recent studies have suggested that short bursts of vigorous exercise may work even better than longer sessions of moderate activity. Besides being more efficient than traditional moderate exercise, research suggests that high-intensity interval training, or HIIT, is also more effective at improving a range of disease symptoms from heart disease, stroke, diabetes and Parkinson’s disease, according to The New York Times.

A HIIT session generally involves 30 to 60 seconds of hard exercise near the top of a person's limit, followed by an easy recovery exercise for the same amount of time. Then the process is repeated for about 20 minutes.

One convenient feature of HIIT is that it can be adapted to exercises many already do, such as walking, jogging and cycling. For example, a workout could include 30 seconds of running at top speed, then 30 seconds of walking.

The Times described a small study in Poland that measured HIIT’s benefit on people with Parkinson’s in a cycling trial:

[P]olish researchers demonstrated that HIIT could alleviate the rigidity and excessive muscle tone that makes it difficult for Parkinson’s disease patients to move their arms and legs. The researchers, from the University School of Physical Education in Krakow, Poland, showed in 11 patients with mild to moderate Parkinson’s symptoms that eight weeks of HIIT, three times a week, on a stationary bike had a global benefit, improving both lower and upper body function.

If you’ve started an exercise program and found that it isn’t challenging enough, don’t hesitate to talk with your doctor or physical therapist about trying HIIT. When Bruce Ballard, a member of our Facebook community, first started physical therapy, the regimen his doctor first suggested didn't take into account his current fitness level and wasn't very rigorous. Since then, he’s found noticeable results from HIIT.

"I alternate between running for a few minutes at a moderate pace, and then setting the treadmill speed at a super-fast pace for two minutes," says Bruce. "Then repeat. My neurologist and I are shocked and delighted at the results."

NOTE: The medical information contained in this article is for general information purposes only. The Michael J. Fox Foundation has a policy of refraining from advocating, endorsing or promoting any drug therapy, course of treatment, or specific company or institution. It is crucial that care and treatment decisions related to Parkinson’s disease and any other medical condition be made in consultation with a physician or other qualified medical professional.

As independent as a hog on ice

My wife bought me a fitbit. What a piece of work! It tells me the time of day, how many steps I have taken (up to 2:30 today I had 6554 - my aim was 10,000 but it is too cold to walk the remaining steps), how many miles I have gone today (3.4) and other stuff, including how many hours I sleep at night with the times I awake and the amount of restless sleep i have. It is an incredible little gem about the size of a lady's wristwatch. Now if someone could invent that, curing PD should be a no brainer!

The fitbit inspires me to get out and walk, use the stationary bike and lift weights, all of which I am certain slows the advance of PD. How can I be certain? Because if I forget my medication before starting my walk, my hand will tremor for the first half mile and then disappear for the rest of my trek (my fitbit tells me my walk is 3.04 miles). If you are a person with PD, get off your duff and exercise.

Of course exercising can also be hazardous. As I predicted, the melt we had yesterday turned to ice over night so when I went out this morning, I made sure to remove the rubber tips from my trekking poles. Good thing. I used them to prevent slipping but I also used them to prevent the parkie gait. The top of my body, from the waist up, wanted to move faster than my lower body. I used the poles to stab the ice in front of me to keep upright. Without them, I would have started falling forward into that peculiar run which inevitably ends with a face plant. I will be using those poles, even when we go to South Beach, no matter how many strange looks I get. They just don't understand snow and ice down there. One reporter wrote during the winter olympics, They have strange events, like the biathlon with lots of skiing and shooting. We are not familiar with this; although, we do get the "shooting" part, but not the skiing.

I am certain they will think me odd using ski poles in 75 degree weather, no snow; just sand. Who cares? It's better than falling on my face. We leave in a couple of weeks. Hallelujah.

Hot town; summer in the City

It is positively tropical here. The high today was +3C (34F). The average temperature at this time of year is a high of -10C (14F).

It sounds so much warmer in fahrenheit!

The problem is the snow is melting. Not so bad, you might be thinking. You would be wrong. The melted snow will turn to ice over night and walking (for a PWP) will become that much more tenuous. If you saw me walking, you wouldn't think I was having a problem - my walk seems so normal. Wrong again. I can feel my right leg tremble at the best of times so when you add ice, I feel like a rhythmically challenged go-go dancer.

Having entered my complaint, I hasten to add that I much refer the warm weather to the cold and I hope it stays around for a few days. Wishful thinking, I think.

I turn now to my nightmare a couple of nights ago. I can't really remember the details but it involved a female who wasn't too keen on me and she let slip her dogs of gore. I could see them coming toward me, growling and foaming. For a moment I thought they were quite beautiful until I realized they were pitbulls. Just as they attacked, my body spasmed, flinging me into the air (OK, that's an exaggeration - but that is what it felt like) and I let out a howl, waking my wife (Are you OK! Are you OK?) I usually don't mind these PD induced virtual reality spasmodic episodes, but this one bothered me, haunting me like a dark shadow throughout the next day and, for $%#@$% sake, made a short, but disturbing cameo appearance in my dreams that night. I am over it now and last night slept until 4AM. I worked for the next 4 hours and finished in time for breakfast when I took a short nap while watching "The Americans" on my ipad.

I believe I might be becoming a vampire.

Do vampires get PD?

They're at the Post. They're off!

Parkinsons n'est pas une fin en soi ! C'est un combat permanent, une lutte parfois désespérée mais .... Le plus dur, garder le cap et accepter l'inacceptable. Desproges disait " On peut rire de tout ..." Et si on essayait?

This just about sums it up. Obviously, I didn't write it. I am trying to relearn the language, donc, without using a translation program, with my limited vocabulary, I took my time and got this out of that paragraph...."Parkinson's is not an end itself! It is an permanent battle, a struggle sometimes desperate but life goes on .... The strongest keep on going and accept the unacceptable. Desproges said "You are able to laugh at all ..." And if we tried?

What struck me was that this simple description was right on target. Parkinson's is an ongoing battle. Some PWP, voluntarily or involuntarily succumb to its onslaught, others know what their destiny is but they keep on fighting while all around, life goes on. Our future has been written, but if you are letting it get you down, try laughter. Laughing helps.

You can find the author of this insight here The author is a WWP (writer with parkinson's) and she has sleep disturbances too. Her entries, done when everyone is sleeping, are in French and English. I will be using the French writings to further my studies because, I am going to Paris in the fall. God only knows if I will be brave enough to actually speak the language face-to-face with a local. Oddly, if somebody surprises me with a french phrase, I understand what they are saying; getting into a conversation is another matter. Mais je vais essayer.

Another little joy of PD has invaded my well being. There are times when I go to say something, and I can't find the word. My chin begins to tremble. It can be a little embarrassing but I have solved the problem. It was so simple. I just simply stopped talking and became the dark, brooding stranger who rarely leaves the house. You know, like Boo Radley in To kill a Mockingbird

The picture is not me. it is Boo

Yes, life for a PWD is full of struggles mais je suis un optimiste. Nous allons gagner à la fin.

For me, it is a race. Can they come up with a cure before I die? Who should I put my money on?

Only time will tell but it is inevitable, we shall overcome.......someday.

Sleep is like an 80 foot great white shark - I think they must exist, but I doubt I will ever see one

The sleep of PD patients is profoundly disturbed, even relative to other neurodegenerative conditions. One survey has estimated that prevalence of sleep disturbance in PD at 98%. Another study I looked at said between 40 - 90%. So who knows? All I care about is that I have real sleeping problems and I read the condition worsens as the "disease" progresses.

Here are some of the symptoms I have had to endure over the past 4 years:

• difficulty turning over in bed - every night is a struggle. My covers have declared war on me and getting in and out of bed is a treat!
• feeling very sleepy during the day - (see below)
• vivid nightmares - I have a few but some of them were interesting, not scary, but the ones that were, scared the poop out of me.
• nocturia (waking up at night needing to go to the toilet) - What? Doesn't everybody?

Yesterday, while immersed in Duolingo (re-learning my french) I fell asleep - TWICE. Usually I get involved in the program, concentrating to the nth degree. I am driving my wife crazy with the noise from my ipad when the program rings a bell, or something, whenever you answer correctly or incorrectly. Anyway I have never fallen asleep before while doing something that challenged me intellectually. Re-learning french is a huge challenge because as the comedian once said "Oh those French, they've got a different word for everything"

In any event, I should not have fallen asleep suddenly and without warning.I got a little anxious so I did some quick internet research and found the following statement concerning PD and excessive daytime sleepiness:

• Daytime sleepiness This condition may result in a so-called “sleep attack,” a sudden onset of sleep that occurs without warning and may lead to serious accidents.

God forbid I should fall asleep while driving! I think my wife will do most of that now - it's more relaxing. I don't believe those stories about women drivers. I think the poor lady in this picture was an aberration....

Drive safely and sleep tight.

I'm left, you're right, I'm wrong

I thought I was handling things well but a couple of days ago, I felt that familiar weak feeling in my left hand and leg

Fore·shad·ow verb \-ˈsha-(ˌ)dō\
: to give a suggestion of (something that has not yet happened)

Hmmm - I feel good today. A little shaky in both hands, but nothing really scary, but, and it is a big "but", I am aware of the fact that my brain is losing ground to the PD onslaught. Oh well, as Janet Reno said when diagnosed, "It looks like I will have some problems in 9 years" or words to that effect. Nine years, if I can stave off the symptoms for 9 years, I will consider that a victory.

I have kind of lost faith in Dr. Oz's prediction of a cure in 10 years; however, there are some good drugs being researched and I am counting on taking them. In the meantime..........

“Difficulty need not foreshadow despair or defeat. Rather achievement can be all the more satisfying because of obstacles surmounted.”

I will hold on to my optimism that failed me for a day or two. I do not despair.

Yet.

Aura ready for this?

Found this on the internet one or two years ago

"The aura given out by a person or object is as much a part of them as their flesh." (Lucian Freud)

I believe in auras. They don't have to be lights or colours surrounding a body; they can be, but they are most likely some internal geist which as escaped to the surface. At its peak, it is an overwhelming feeling of being just right. At its worst it is a deep depression. These types of auras can be detected by those around you. Everybody gives off an aura. How else can you explain liking or not liking a person you just met.

I also beieve some auras are light or colours surrounding a person. I think babies might see auras. They cry when held by some strangers while they sleep happily for others. These types might be the production of some vestigial brain function, lost to adults through time by our refusal to believe what we see. Perhaps they explain the concept of "halos". But I digress.

You can feel when your aura is good or is beginning to deteriorate.

We know that some migraine sufferers experience an aura just before the headache starts. Well the same goes for the pleasures of Festination, that involuntary tendency to take shorter, accelerating steps until you counter act, rest, or try defensive techniques to stave off the condition.

The point is, you can feel you are about to festinate before the actual event. It is like an aura. There are no colours involved, just an overall feeling that you are not quite in charge, as if there is a disturbance in the force and your defences are about to be breached by unknown forces. It is a very strange feeling and if you are in a public place, people around you will know you are not A-OK. Without knowing you, they want to help (or they might stay clear of you, sensing that you are not one they need to know). They have experienced an insight into your condition by your fading aura.

When you get that feeling of "not quite right", the best thing to do is to sit down until the feeling passes, but if you are in a hurry and have no time to rest, here are some techniques for staving off the festination event passed on to me by experienced PWP.

• Start consciously correcting your pace. Walk upright and think "heel - toe, heel -toe".....and so on and so on at your normal pace. You might even say the mantra out loud. This might counteract your brain which is saying, "make small steps, speed up, collapse."
• Take bigger steps, make your arms swing. March. Like a drum major. You don't have take huge steps like a North Korean soldier marching before his Exalted leader, but you do have to march with a stiff upper body and chin pulled in. It won't be long before the feeling of lost control passes.
• This next one was told to me by a long-time sufferer. He said that when you feel you are about to festinate, turn 360 degrees, then take one exaggerated long step and the feeling should pass fairly quickly.

So much for auras. Just convince yourself you are the master of your body and when attacked by PD, there are always ways to deal with its onslaught. Keep your chin up and look at the brighter side of things. It will improve your aura. Be optimistic. It is not as bad as you think it is.

It's not that optimism solves all of life's problems; it is just that it can sometimes make the difference between coping and collapsing.(L. Macdonald)

It's a Long Way to Tip-a-wary

When we PWP go running or walking, we face several problems. I have encountered the following:

• falls which I believe were the result of my right foot not lifting off the ground sufficiently, thereby causing the toe to drag or hit some anomaly on the ground. One such fall had me end up with cuts and bruises to my hands and face after scoring a 9 out of 10 in the pavement face plant event.
• a couple of bouts of festination, better known as "The Parkinson's gait". If you haven't encountered this little joy yet, you won't believe it. You start off with a normal walk, then find yourself leaning forward, your gait picks up, you lean more and more forward, your gait turns into an awkward slow run, you try to straighten up but instead you fall flat on your face. I was fortunate the first time, I fell into a snow bank. The second time, I was aware of the phenomenon so that I was able to brace myself and get my hands out to lessen the impact. Festination was explained to me as being caused by the body's center of gravity gradually moving further and further away from the body. An old pro told me to consciously think "heal-toe, heel-toe" as I was walking. Good advice, but I am easily distracted by shiny objects and lose my concentration. I had to find an alternate method.
• Veering to the right or left. This has only happened once. I kept veering to the left, as if the road was tilted. I tried to move to the center of the road to counteract any slope, only to find the road was slopeless but I kept right on veering until finally about 2 blocks from home, I gave up and asked my wife to come and pick me up. That is the only time PD has really "got" to me and made me aware that I might never be able to control my body at some point in the future.

But don't despair. I have found a solution to all 3 problems - trekking poles. I use only one on my right side. It keeps me upright (no toe dragging or festination). It keeps me steady (no veering) and I can use it to jab the ground in front of me if I feel a fall coming on. Good stuff, but I still would rather not have to do this; however, looking back isn't going to help, so I will just keep on moving forward.......slowly, of course

All the world's one big $#@%$# Stage!

Parkinson's disease strikes people in many different ways, leaving them to experience a broad range of symptoms. Though symptoms may be mild or severe or occur frequently or infrequently, Parkinson's disease appears to have five different stages. The time spent at each stage varies, and the skipping of stages, from stage one to stage three, for example, is not uncommon.

Parkinson's disease stages include:

Stage one: During this initial phase of the disease, a patient usually experiences mild symptoms. These symptoms may inconvenience the day-to-day tasks the patient would otherwise complete with ease. Typically these symptoms will include the presence of tremors or experiencing shaking in one of the limbs.

Also during stage one, friends and family can usually detect changes in the Parkinson's patient including poor posture, loss of balance, and abnormal facial expressions.

Stage two: In the second stage of Parkinson's disease, the patients symptoms are bilateral, affecting both limbs and both sides of the body. The patient usually encounters problems walking or maintaining balance, and the inability to complete normal physical tasks becomes more apparent.

Stage three: Stage three symptoms of Parkinson's disease can be rather severe and include the inability to walk straight or to stand. There is a noticeable slowing of physical movements in stage three.

Stage four: This stage of the disease is accompanied by severe symptoms of Parkinson's. Walking may still occur, but it is often limited and rigidity and bradykinesia are often visible. During this stage, most patients are unable to complete day-to-day tasks, and usually cannot live on their own. The tremors or shakiness that take over during the earlier stages however, may lessen or become non-existent for unknown reasons during this time. Stage five: The last or final stage of Parkinson's disease usually takes over the patients physical movements. The patient is usually unable to take care of himself or herself and may not be able to stand or walk during this stage. A patient at stage five usually requires constant one-on-one nursing care.

(all from WebMD)

Progression through the stages

The average time taken to progress from Stage 1 (mild) to Stage 2 (mild but various symptoms) was 1 year 8 months. The average time taken to progress from Stage 2 to Stage 3 (typical) was 7 years and 3 months. From Stage 3 to Stage 4 (severe) took 2 years. From Stage 4 to Stage 5 (incapacitated) took 2 years and 2 months. So the stage with typical symptoms lasts the longest. Those factors associated with faster progression were older age at diagnosis, and longer disease duration. Gender and ethnicity were not associated with the rate of Parkinson's Disease progression. These figures are only averages. Progression is not inevitable. Some people with Parkinson's Disease have either : stayed the same for decades, reduced their symptoms, rid their symptoms, or worsened at a rapid rate. (viatis.net>

Blogger says

Scary, isn't it? Yet after 4 years, I remain in stage one and I have experienced all of the symptoms in that stage; however, they didn't last long, even before I was given L-Dopa. Balance issues? Yes, but I remain upright. Facial issues? Once or twice but I don't maintain a PD mask. Problems walking - a few. etc. etc.

Sometimes I think our creator constructed the universe as a stage on which he or she could marvel at our struggles. Well, sir or madam, I have experienced a little bit of stage fright in my circumstances, but I get over it quickly and I will step boldly onto future's stage.

What's that! What did you say Will?

“Life's but a walking shadow, a poor player, that struts and frets his hour upon the stage and then is heard no more; it is a tale told by an idiot, full of sound and fury, signifying nothing.” Shakespeare