The Falling Over Blues

The Falling Over Blues

Lisa, our "Parkinson's in mouvement" singing instructior, challenged us to write a blues song about our experiences with Parkinson's.

The song which appeared fully formed in my brain was the Falling Over Blues.    

The Falling Over Blues

I got the falling over blues

I got the falling over blues

I just keep falling over

But I pick myself up

and start all over again

No matter what I do

No matter what I do

I just keep falling over

But I pick myself up

and start all over again

But one of these days

But one of these days

I’m going to learn to balance,

And I’ll pick myself up

and start to dance on a wire.

But I’ll pick myself up

and start to dance on a wire.

https://www.dropbox.com/s/e4f5zhcl6dzhubk/falling%20down%20blues.mp3?dl=0

You can hear it here

Parkinson's, a not very poopy disease.

I have never liked to talk in detail about people's bowel movements. Maybe it is because I was toilet trained by 12 months of age, or maybe because we were a family of 8 with one toilet, and my mother always had right of way. And we did not discuss such subjects as a family – in fact my mother accused me of embarrassing the family doctor by asking him what a bowel movement was! But for the sake of my friends with Parkinson's I steeled myself to explore what is known about constipation in Parkinson's disease. What I discovered, both about bowel function and about Parkinson's disease, made the exploration well worthwhile.

So I will put a clothes pin on my nose and tell you all I have learned about this shitty subject.

Constipation is often the first sign of Parkinson's disease (PD), and a change in bowel habits may closely precede the motor symptoms (that is the body movement problems) of PD. Of course not everybody who is constipated has Parkinson's disease. But PD is one explanation for a change in bowel habits.

What do we call constipation? For regular people it is not having a shit as often as you feel you should. For the medical researcher, who needs a more precise and objective definition, it is:

in at least 12 weeks of the preceding 12 months:

1. 2 or fewer bowel movements per week, or

2. a frequent feeling of not having completed a bowel movement, or

3. frequently having to strain at stool, meaning you have to work hard at it to get it to come out., or

4. feeling of obstruction at the level of the anus (butt hole), or

5. hard stools in more than 1 in 4 evacuations.

Depending on what study you look at, it is estimated that between 20% and 80% of patients with Parkinson's disease (PWP's) are constipated.

There is a tremendous variation in the frequency with which normal (non-Parkinson's) people have bowel movements. Some people it is several times a day, for others only a few times a week. I saw in my children when they were babies an incredible variation in their stool frequency, from the one who was several times a day to the one for whom it once or twice a week and you might have to stabilize the perineum (put your hands around the anus to reinforce it ) to allow them to pass the stool. It depends on diet, on the level of tension in the home, on opportunity, and on toilet training and on genetics. When I was in medical school and went to see my family for holidays I might go the whole week without a bowel movement, then as soon as I was in my apartment and relaxed I just went back to normal.

However in Parkinson's disease it is a whole different ball game. PD is a degenerative disease of the nerve cells, and it affects the nerve cells in the bowel as well as those in the brain.

Here was my first discovery to do with bowel function. (Rather, I did not discover it, I just found out that it was known.) Some of the cells which cause peristalsis in the bowel, have been killed by apparently the same process that caused the Parkinson's disease. Because of the loss of neurons around the bowel, peristalsis, which moves the food around through the bowel and out the end, is impaired.(3) Not only that, but the co-ordination that causes the anal sphincter, the muscle around the anus which keeps it closed, to relax when you push down, loses its co-ordination so you end up pushing against a closed door.[1]

In normal people who are not constipated, it takes about 20 hours for waste material to pass through the colon or large bowel. Excess fluid is removed and the stool becomes firm. But if it stays too long it gets dry and hard, and it may not be easy for bowel peristalsis to move it along. This situation is called impaction. and may require medical intervention. If you have constipation and abdominal pain, it could be due to fecal impaction and you should get yourself to a doctor.

In constipated people without Parkinson's disease it may take 60 hours for stool to pass through the large bowel, but if they are treated with laxatives the transit time returns to a normal time. However with PWP's, almost whatever you do, you can't change the bowel transit time.

What should you do?[4] Once you are in trouble you should consult your doctor. You may need an enema, a suppository, or even manual disimpaction. If you are constipated and have abdominal pain you need to see a doctor right away. Some of my Parkinson's friends have had to go to the hospital on numerous occasions to be manually disimpacted. That is to say: have the stool removed by hand. This is painful and may require a general anaesthetic. The thing to do is to prevent yourself from getting into that state.

1. Fluids: The first thing is to make sure you are getting lots of fluid. For example, make sure you take a full glass of water with each dose of medicine. Unless there is a medical reason you cannot drink large volumes, you should aim for 8 glasses of water or other fluids per day.

2. Fibre: Next, increase the amount of fibre in your diet. The current recommendation() is 20 to 35 grams per day [b]. This is really a lot – you have to take the high fibre option for every thing you eat.

Lets look at how I did today:

Meal	Food	fibre
Breakfast
	All bran 1 cup	6 grams
	1 c milk	0
	apple	1.8
	orange	1
	raisins	0.2
	tea	0
Lunch	lasagne	.5
	salad	.5
Dinner	Bread, whole wheat 2 slices	6
	Tomato and lettuce	.2
	Ice cream pie	0
	Chicken	0
	Nuts, 50 g	8 g
total		24.2 grams

So even though I chose as many high fibre options as I could, I only got to 24 gram, the lower part of the target range.

Note that “all bran” cereal has psyllium added to artificially increase the fibre content (like Metamucil), and that the whole wheat bread and the nuts are the major contributors to the total. It takes real dedication to get the fibre up into this range.

4. Exercise: Get some exercise every day. This will help to keep things moving.

5. Laxatives: It is not recommended to take irritant laxatives such as senna every day. However you can add an osmotic laxative, such as polyethylene glycol (PEG) 3350. (Magnalax and others) An osmotic laxative remains in the bowel and is not absorbed from the digestive tract, and helps the stool to retain water by its osmotic pressure. Lactulose is also an osmotic laxative. PEG by itself has been shown to help with constipation in the elderly in general [4], and in Parkinson's patients although it does not normalize the colonic transit time it has been shown to reduce fecal impaction by keeping the stool soft. It can be taken up to twice a day.

If that is not enough Magnesium or milk of magnesia may be added. (Discuss this with your doctor first – if you have other medical problems like kidney disease this could be dangerous.) Magnesium can be titrated to give the required stool frequency.

If there is still a problem then more draconian measures such as suppositories or enemas . may be needed. These should be discussed with your doctor.

Around Christmas this year my husband decided to please our youngest by buying white bread instead of brown bread. It took a few weeks for me to develop severe constipation, with hard stool which really required pushing to get it out in spite of the fact that I had been taking a stool softener (ducosate 100 mg twice daily) all along.

I realized that I had to find a protocol that I could follow regularly to keep me out of trouble. I have added daily polyethylene glycol (PEG) to my regular medications. One dose every day at bedtime. (To cover the chemical taste I mix it with hot milk and Ovaltine or Horlicks (delicious)). Even that is not enough to keep me going, though there is no more hard stool. Now on the instruction of my doctor I am taking a magnesium tablet (each has about 100 mg elemental magnesium) every day, and that keeps me going. (Actually she told me to take three, but if I take the three I feel like I need to spend the whole day on the toilet.)

No doubt things may get trickier as time goes by. I will have to deal with that then.

Ah! Now I can take that clothes peg off my nose. I just have to figure a way to get everyone around me to stop talking about their shit!

Next: the gastrointestinal theory of Parkinson's disease.

References:

1. Kim, JS, et al, Anorectal dysfunction in Parkinson's disease, J Neuro Sci 310(2011)

144

2. uptodate 2015

3.Cersosino M G et al, Pathological correlates of gastrointestinal dysfunction in Parkinson's disease, Neurobiology of Disease 46:559, 2012

4. Cosgrave,M, et al, 'Management of faecal incontinence and constipation in adults with neurological disorders, the Cochrane library, 2014, #1

 

It's not my coat!

Last Sunday I was getting ready for church. I decided to wear my good black cashmere coat. I hadn't worn it for a while, but recently got it out to be a little more formally dressed, instead of wearing my down coat. I was waiting for my husband to get ready, and decided to clean out the pockets while I waited. I removed a pair of gloves I did not remember buying, some kleenex, a few receipts, then a set of keys that were not mine! The fob looked familiar, a cluster of little red and gold spheres, threaded together. And one of the keys was on the same blank as my house key, but the other two I did not recognize at all.

My husband compared the key with his house key, and it looked identical with ours. Who would have had a key to our house, and at the same time worn a coat similar enough to mine that they might have taken the wrong coat?

There were two suspects, the lady from our cleaning service, who came on Thursday; and my daughter, who had visited on Friday night. .

I called my daughter, and she said she had both of her coats .I did not have the phone number of the cleaner but called her supervisor, who was away in Cuba. She would not be back until next week.

On Wednesday of the next week, I figured the supervisor would be back, as they were expected at my house on Thursday. I called her, and she denied knowing anything about a coat.She said there were no missing keys. Her key to my house was on their board.

Then I tried the key on the key chain in my door. It did not open my door. Oh!-Oh! We compared the key again with our house key. It was very similar, but not quite identical! My conclusion that it had to be someone's who had a key to our house was a red herring. It was not our key.

Where had I been in the last days before I noticed it was not my coat? When did I first have the wrong coat?

For sure Sunday I had the wrong coat, because it was then I saw the keys.

Where was I Saturday?

At the funeral of a fellow Parkinson's sufferer.

I called the funeral home. “Yes, your coat is here.”

I don't know whose coat I took, but was profoundly sorry. That person went home with no coat, and no keys. It was not a warm day – there was still ice on the streets. And how did she get into her house?

But why did I take the wrong coat? Admittedly they were both black cashmere coats with black satin linings, of good make, but they fitted quite differently.

Multiple choice question for the reader: (you can answer in the comments)

Was it that:

1. I did not recognize that I had the wrong coat because I wore it so infrequently.

2. I have Parkinson's dementia. Or

3. I was upset at the funeral and didn't notice what I was wearing.

On the assumption that 1. is the correct answer, I am going through my clothes and give away the coats I do not regularly wear. Too much of a liability.

I prepare a summary of a medical area related to Parkinson's disease for my support group each  month, and will publish essays here based on these reviews.  These essays are intended to help readers make informed decisions about their health and the health of their loved ones. 

Information contained here is not intended to be a substitute for treatment by or the advice and care of a professional health-care provider.  While the author has endeavored to ensure that the information presented is accurate and up-to-date, she is not responsible for adverse effects or consequences sustained by any person using this blog. 

Prevention of Falling in patients with Parkinson's disease

I was in the emergency room being seen for a banged head.  I had fallen  after getting down from watering my hanging plants. (They are no longer hanging.) I said to the ER doc, “These falls are going to kill me.” He hesitated a moment, then looked at me and said, “Yes.”

I was diagnosed with Parkinson's disease in 2005, because I was not swinging my left arm as I walked, I stumbled and shuffled with my left leg, and I had a stare. I was tripping over things. And I was incredibly anxious. Ten years later, I am still mobile, but can no longer work. The main thing I am afraid of is falling.

The most serious side effects I have had from Parkinson's disease were caused by falls.

Falls have dislocated my right shoulder. Broken my right wrist. Not to mention bruising. I nearly had a compartment syndrome,  where a part of your body surrounded by connective tissue swells to the point where the arterial blood almost cannot get in to feed the tissues.

So do as I say, not as I do.

What do patients with Parkinson's (PWP's) die of? Often they are elderly, and die of something completely other than the Parkinson's, like cancer or heart disease. But if nothing else happens, there are two major Parkinson complications which can finish us off:
1. Fractures (particularly of the ankle, thigh, calf, hip or leg) which cause immobilization. Not moving enough predisposes the patient to developing pneumonia, bed sores, and other pleasures; and aspiration pneumonia. 
2. Aspiration means food or stomach contents get into the lungs, where they encourage the growth of the bacteria that then cause pneumonia.

The Quebec government did extensive research on falls in the elderly (1).  Thirty percent of regular folks over 60 fall and injure themselves in a given year, and 50% of those over 80 fall. Falls are the most common cause of death in the elderly, outside of death from a pre-existing chronic disease. If the person is not found immediately after the fall he may become dehydrated and his kidneys may fail, or he may develop skin lesions due to pressure from the ground or floor. Only half of those who break a hip will be able to walk again, and 20% die in the subsequent year.

The elderly fall because of weakened muscles and poor balance. PWP even more so. Balance and co-ordination are particularly affected by Parkinson's disease. So exercise, especially exercise that challenges your balance, is very important. In early Parkinson's disease, exercise may delay the effect on the body of the Parkinson's disease.  In more advanced Parkinson's, exercise actually increases the risk of falls, but it is a balancing act (pun intended), because if you stop moving, you lose the ability to move. Tai chi: falls reduced by 24%.ⁱ

Next, get your eyes checked. Removal of a cataract, or more precise corrective lenses, may save your life. Correct vision: falls reduced by 34%.

Adapt your house to your reduced agility. Put banisters on both sides of all your stairs, and hold onto them on your way up and particularly down the stairs. Provide lighting on stairs and hallways. Put bars around the bath and toilet to steady you getting in and out of the bath and onto and off the toilet. Reduces falls by 20%.

A second banister has been added to the wall side of the stairs, allowing me to hold on going up or down the stairs.  It is firmly fixed to an anchoring block attached to the wall at the studs. It matches the oak of the stairs well enough to blend with the style of the house, and so will not necessarily need to be removed when it is no longer needed.

Stairs if they are bare wood should be varathaned with a special varathane for stairs, which has a rough surface.  If carpeted, the surface of the carpet should be rough.

In the bathroom it is important to have grab bars so you can hold on while you are showering, and getting in and out of the bath.  For traction on the bottom of the bath a bath mat or stickers helps.  Grab bars made of stainless steel helps to avoid unsightly corrosion.  Our towel rail (not shown) is also installed as a grab bar.

The railings on the wall were installed during my first pregnancy, and are useful to hold on to when I stand in the shower and in getting out of the bath.  The railing on the edge of the bath is useful to steady me when I get in and out of the tub. 

Remove all loose rugs and obstacles from the house. Don't put your knitting on the floor by your feet where the wool will tangle round your ankles and trip you when you get up.

Vitamin D and calcium will help your bone health. In addition I have read that vitamin D reduces falls by 19%.

Review your medications with your doctor. Do you need them all? Are some of them sedatives, that could make you more likely to fall? Cut out the ones you don't really need. Particularly avoid benzodiazepines which can build up in the blood of the elderly, and of course avoid alcohol. Reduce falls by 27%.

Get boots with crampons, or crampons to go on your boots when it is icy. (Better still, avoid walking outside when it is icy.) Be aware that you can't wear some types of crampons inside buildings, because they will actually make you slip on the hard floor, whereas they dig into ice. Reduce falls by 58%.

Those numbers are for the elderly in general. In PWP, the situation is aggravated by rigidity of the muscles from the Parkinson's, and abnormal movements, or dyskinesias, due to the medications given for Parkinson's, which can throw you out of balance. Fear of falling also causes falls. “Freezing” with sudden stops, may also cause falls. There are a number of techniques to avoid freezing.

On the icy streets of Montreal it is easy to fall. 

 Stairs are another thing. Many homes here have outside staircases to get to the second or third floor apartment or condo (I.e. one or two floors above the ground floor) . For all staircases, it is critical to remove the snow and ice, and lay an abrasive or salt according to the outdoor temperature. If necessary you should hire someone to do this for you before you go out the door. If you are a PWP, you should not do it yourself.

The shoes you wear indoors or outdoors are very important. The soles should not slip, nor stick too much. If they have laces, make sure they stay done up. One of my worst falls was due to stepping on the laces of one boot with the other foot. Better still, get shoes with velcro closures, and get rid of the laces altogether. Stocking feet are not a good plan, unless you want to fall down the stairs. Get a good pair of slippers or shoes for indoors.

I find that my slippers, which tend to have a rough surface on the upper part, catch on the fabric of the other leg of my trousers when I go down stairs.  This delays the lifted leg from finishing the step, and if I was not holding onto a railing I would go headfirst down the stairs. I nearly did that yesterday.  And I fell down the six concrete steps at the optician's, as there was no railing and my foot caught on the rough concrete on the top step. So put a bicycle clip on loose trouser legs, or find other footwear which will not grab the fabric. 

What has caused my falls?

I got angry and stood up on my foot-stool, then lost balance and fell and hit my head and dislocated my shoulder. Denied hitting my head in the ER or later, until months afterwards I heard myself saying “When I came to after my fall….”

At boxing class, did a dance step with too much enthusiasm. “Punch, punch, pivot….” Pivoted back on my outstretched hand and broke my wrist.

So don't get angry. Or, to be more realistic, don't move in anger. Don't run to catch the doorbell or the phone. And contain your enthusiasm.

Know that you can't protect yourself by wrapping yourself in cellophane – life is to be lived! To the end!

Reference:

1. Gagnon C., Lafrance M. (2011) Prévention des chutes auprès des personnes âgées vivant à domicile. Analyse desdonnées scientifiques et recommandations préliminaires à l’élaboration d’un guide de pratique clinique. Institut national

de santé publique du Québec, juin 2011.

I prepare a summary of a medical area related to Parkinson's disease for my support group each  month, and will publish essays here based on these reviews.  These essays are intended to help readers make informed decisions about their health and the health of their loved ones. 

Information contained here is not intended to be a substitute for treatment by or the advice and care of a professional health-care provider.  While the author has endeavored to ensure that the information presented is accurate and up-to-date, she is not responsible for adverse effects or consequences sustained by any person using this blog.