Clinical and Double Blind Studies for Peyronie's

Clinical Studies for Peyronie's

I will start this article about Medical studies with Drugs and Supplements that have been studied and the results, and also cover some other products that have not been tested.  If you wish to take the time to go through these studies, you will see the reasoning behind the 3 step program that I developed and used to successfully treat my Peyronie’s disease.
Colchicine:
Colchicine is a drug that is mainly used to treat Gout due to its’ anti-inflammatory qualities.  It is also known to reduce the production of collagen and increase the activity of collagenase. (the enzyme that breaks down collagen)  Colchicine is extracted from the “Meadow Saffron” plant.  It is a toxic drug and its’ toxic qualities are amplified or multiplied when combined with cholesterol lowering drugs. (statins)
Adverse Reactions to Colchicine include nerve damage that causes numbness and tingling in the hands and feet, in advanced cases this effect can be permanent along with an increased risk of dementia.  Large doses can result in respiratory failure and death.  Colchicine is not FDA approved for treating Peyronie’s Disease and the toxic side effects really are not worth the risk, since study results have been mixed.
An uncontrolled group study of 24 men took Colchicine in 1994.  The results of the study were, 26% of the men reported a marked decrease in curvature, 11% reported a slight decrease, 63% were unchanged, and 50% of the men reported plaque size reduction.  I do not have the duration or dosage taken in this study.
The next study in 2004, involved 78 men broken into two groups.  One group took .5mg-2.5mg. colchicine per day for 4 months.  The other group took a placebo.  There was no difference in curvature reduction reported between both groups.  There was another study undertaken using 84 men with the same protocol above.  All of the men were screened to make sure they had similar duration of disease – 15 months.  The results were no difference between Colchicine group and placebo group.
Pentoxifylline:
Pentoxifiylline works by changing the shape of red blood cells in the body, thus reducing the viscosity (thickness) of the blood.  This allows blood to circulate more freely, especially to the bodies extremities.  Pentoxifylline acts as a mild stimulant and is in the same family as caffeine.  Men that are allergic to caffeine should not take Pentoxifyllline without medical observation.  Brand names are Pentoxil and Trental.
A study by the University of California at San Francisco treated 71 men with Peyronie’s Disease.  62 men took Pentoxiffyline for a year and 9 men received no treatment.  The calcifications stabilized or improved in 57 of the 62 men who took Pentoxiffyline compared to 4 of the 9 men in the no treatment group.  I found no reports of curvature improvement in the study, so that part is unknown.
Another larger study with 228 men participating was don at Ahahid Beheshti University in Tehran, Iran.  114 men took 400 mg. Pentoxifylline twice daily.  The other 114 men took a similar regimen of placebo.
Results: 35.9% of the men in the PTX group reported a positive response with only 4.5% in the placebo group.  Improvement in measured curvature on average was between 11.4 – 11.7% in the PTX group.  In the placebo group curvature improvement was .2 to neg.4.2%
11% of the PTX group still have disease progression compared to 42% in the placebo group.
Tamoxifen:
In a study using Tamoxifen VS. Placebo there was no significant improvement VS. the placebo group so this study is a non-story.
Tamoxifen VS. Acetyl-L-Carnitine:
Results: Acetyl-L-Carnitine was significantly more effected and safer to use in the treatment of early acute Peyronie’s Disease.  Tamoxifen induced significant undesirable side effects.
L-Carnitine:
The body produces carnitine in the liver and kidnesy and then stores it in the heart, brain, sperm and muscles.  It acts as an anti-oxidant and helps restore cells damaged by inflammation.  Only one study has been done on L-Carnitine for treatment in Peyronie’s Disease.  Acetyl-L-Carnitine significantly reduced penile curvature and plaque size. (Biagiotti, 2001, Turin, Italy)
The suggested dosage of carnitine for Peyronie’s Disease is 1 gram (1000 mg.) twice daily for three months.
Arginine:
Arginine is a popular supplement for Peyronie’s but studies are very limited.  In 2003 a study found arginine given to rats in mixed in their water.  Arginine was effective in reducing plaque building components.  Arginine was also used in an another study, but it was combined with other drugs, so the reports would be mixed and not statistically significant.
Arginine should not be taken with sildenafil (Viagra), or with blood pressure lowering medications.
PABA: Para-Aminobenzoic Acid
PABA (Para-Aminobenzoic Acid) is a popular Peyronies remedy. It is best known as a sunscreen in topical lotions, since it blocks UV light.  The reviews are mixed on how effective PABA is for treating Peyronie’s. A typical safe dose of PABA for therapeutic use is 400 mg. daily. Most of the studies using PABA are very old, dating back to the early 1940′s.
There is only one double blind placebo study that I could find, that used a control group of over 100 men with Peyronies. The trial enrolled 103 men and for one year they ingested 3 grams, 4 times daily. The progression of their Peyronie’s was significantly slowed, but it did not reduce any pre-existing plaque. Doctor’s consider 400 mg. a day a safe dose, but the men in this study were ingesting 12,000mg. or 12 grams daily. This is far beyond the safety threshold, and should not be done except under strict medical supervision.
In 1959 a study was undertaken with 21 patients and another study in 1997 included 32 patients, but since they were not double blind placebo studies there was not a control group to compare the results with. These studies used from 12 grams daily to a maximum of 20 grams daily. Because it takes such high doses of PABA to get a positive response, and it causes significant gastrointestinal side effects, PABA for Peyronie’s Disease often is not recommended as a treatment. Other more uncommon side effects include nausea, reduced appetite, fever, and rash. PABA can also interact with some medications, including sulfa antibiotics.
Vitamin E
Vitamin E as an oral supplement has been extensively studied, and shown to have no impact on Peyronie’s Disease.  Vitamin E may be effective in combination with other supplements and treatment combinations.  One possible medical regimen is 100 mg of vitamin E taken three times a day for a minimum of four months. Theoretically, this antioxidant will prevent further development of plaque, although studies have suggested that it is no more effective than placebo.
Gotu Kola 
Use of Gotu Kola, which is also called Centella asiatica, Indian pennywort, and other less known names is believed to contain certain chemicals that seem to decrease inflammation and also decrease blood pressure in veins.  Gotu Kola is used to treat various conditions in which fibrous scar tissue causes problems, and for that reason it has been advocated for Peyronie’s disease. However,  there are no studies with evidence to show that it is effective.  http://www.med.nyu.edu/content?ChunkIID=35551
Some of the comments about Gotu Kola at the Peyronies’ forum can be read  here: http://www.peyroniesforum.net/index.php?topic=2940.0
The verdict is out on Gotu Kola’s effectiveness in treating Peyronie’s, but it does seem to have many other health benefits, and is generally accepted as safe.
Omega 3 Oils
The data from a study of 224 patients with chronic Peyronie’s Disease was divided into two groups.  The results of the study did not show any data that would support Omega 3 supplements to be beneficial in treating chronic Peyronie’s Disease.
One of the problems with this study in my opinion, was the low dosage of Omega3 that was given to patients, and the questionable quality of the products administered.  There are all types of Omega3 oils, and many brands are so processed, that their effectiveness is in doubt, and questionable at best.

Proteolytic Enzymes
Serrapeptase is a potent proteolytic enzyme that contains 470 amino acids and a zinc atom, which is essential for proteolytic activity.  Medical studies have not been done for treatment on Peyronie’s Disease specifically, but other medical studies have proven this enzyme to be more effective in anti-inflammatory activity on collagen than the other proteolytic enzymes that were used in the study.  It was also shown to have a synergistic effect with aspirin.  (2008 Dept. of Pharmacology, J.N. Medical College, India)
A study conducted in Jordan in 2008,  found Serrapeptase to offer significant reduction in swelling and pain, with oral surgery, and no negative side effects.  It has been used in numerous studies from Breast engorgement to acute inflammation in chronic ear, nose and throat disorders, with significant symptom reduction.  These double blind placebo studies found that Serrapeptase was well tolerated and its’ anti-inflammatory, anti-oedemic and fribrinolytic activity, acts rapidly on localized inflammation.
Serrapeptase/Nattokinase blends have been found to be very effective in the reduction of Fibroid tumors, and Endomitriosis in women.  Serrapeptase also has the ability to digest non-living tissue that is a by-product of the healing response without harming living tissue. Serrapeptase is used to dissolve non-living tissues to include: scar tissue, fibrosis, blood clots, cysts and arterial plaque. It is also used as an anti-inflammatory agent against Sinusitis, and as a thinner for mucous secretion.
Bromelain is a powerful proteolytic enzyme that has anti-inflammatory effects and is known to increase fibrinolytic activity in the blood.  Bromelain is derived from pineapples. Bromelain is a popular enzyme used in the treatment of Peyronie’s Disease.  It is a candidate for studies, because of its’ link to promoting the enzyme collagenase, which digests collagen.  Bromelain has many of the qualities of Serrapeptase but it is not as well tolerated.  Common side effects include diarrhea, increased heart rate, nausea, stomach pain and vomiting.  Avoid Bromelain if you are allergic to bee venom, carrots, celery, papaya, pineapple, rye, wheat and pollen.
Bromelain by itself is effective as a blood thinner.  When taken with blood thinners it can raise the risk of bleeding.  Bromelain for health maintenance is generally deemed safe at 50 mg. a day with little risk of side effects.  The recommended dose for treating Peyronie’s is 500 mg. a day.  This high of a dose should not be maintained on a long term basis.
Topical Gel Applications
DMSO with Serrapeptase was studied in use for a transdermal topical gel to treat subcutaneous inflammation.  It was found that DMSO concentrations had to be  unacceptably high in order to transfer the enzyme beneath the skin, due to Serrapeptase having a large molecule weight, it would not readily permeate the skin.  Indian J Pharm Sci. 2010 Jan-Feb
DMSO with iodine was found to reduce infections and increase the effectiveness of iodine alone in hospitals where Staphylococcus epidermidis was causing increased infection, mortality, and health care cost. (J Clin Microbiol. 2012 May)
An article by Dr. Jonathan Wright of the Tahoma Medical Clinic discusses the use of Iodine and DMSO  http://tahomaclinicblog.com/iodide/
DMSO may be an important stimulator of the tumor suppressor protein HLJ1 through AP-1 activation in highly invasive lung adenocarcinoma cells. Targeted induction of HLJ1 represents a promising approach for cancer therapy, which also implied that DMSO may serve as a potential lead compound or coordinated ligand for the development of novel anticancer drugs. (Published online 2012 April 17)
DMSO in the treatment of Scleroderma.  Scleroderma is a baffling disease in which the body begins manufacturing collagen, where it begins collecting in the extremities.  Scleroderma often will go into remission, but can be fatal if it continues its’ progression, unabated.  Dr. Jacobs is well known for treating Scleroderma with DMSO.  The following is the conclusion of this study.
The relief of pain, stiffness and, to a lesser extent, weakness in these patients who have been treated with DMSO is impressive, and most of the patients are continuing maintenance treatment. It appears that DMSO, as administered at present, has no effect on the internal manifestations of scleroderma. Of 26 patients who had good to excellent improvement, 16 had minimal, and eight had moderate disease, according to our criteria for classification of the severity.
It should be emphasized, however, that the results seen in treating patients with scleroderma with DMSO have never been observed with any other method of therapy. It is the first time we have observed evidence, both clinical and histological, that the collagen is undergoing definite change.
Verapamil GEL has been falling from favor as a viable treatment option of Peyronie’s.  A survey of 236 practicing urologists in 2008 found that only 10% selected Verapamil gel as their first treatment choice.  In 2002 Loyola University Medical center came to the conclusion in their study that the use of transdermal verapamil has no scientific basis.  Transdermal Verapamil does not infiltrate into the Tunica Albuginea.  Wish I had known this before spending $1,000.00 on Verapamil.
 Intralesional Injection and Iontophorisis
Verapamil VS. Saline – Iontophorisis, electromotive drug administration.  This placebo study has 23 men in the Verapamil group and 19 men in the saline placebo group.  Results:  The Verapamil group achieved greater decrease in curvature, but the results were not statistically significant.  The results concluded this option was effective in patients complaining of pain and with mild curvature.
Verapamil Intralesional injection, (Long term study 1994-1996 Dept. of Urology, Montefiore Medical Center, Bronx, NY)  Conclusions:  The study suggests that intralesional injection may be a reasonable approach in some selected patients with non calcified plaques and penile angulation of less than 30 degrees.
A placebo controlled study involving 80 patients in Iran, actually showed more curvature decrease in the saline control group, than in the Verapamil group.
Corticosteriod injections VS. Saline Placebo:  Placebo was more effective in curvature correction than the cortisol group . . . enough said?
Another reason that steroid injection has become less popular is that we know that steroids can result in tissue atrophy, and thereby may cause thinning and weakening of the penile tissues. Therefore, with rare exceptions the use of intralesional steroids have been completely abandoned.   http://www.peyroniesassociation.org/forums/topic/intralesional-injection-therapy-dr-laurence-levine/

Interferon Alpha 2B injections VS. Saline Placebo: A study of 39 men at Tulane University, New Orleans, LA,  injected Interferon Alpha 2B directly into the plaque of 19 men.  20 men received saline placebo injections.  Same protocol for each group, injections were given once a week for 12 weeks.  6 months later they received a follow up visit and evaluation.  The Interferon group showed significant improvement over the placebo group in curvature, plaque size and density, and pain with erection.
30 men in Ankara Turkey were studied using a similar protocol as the test above for management of early stage Peyronie’s.  The conclusion was that Interferon Alpha 2B was not clinically effective in treatment and management of early stage disease.
Interferon Alpha 2 B frequent side effects are fever, and mild to moderate flu like symptoms,of short duration.  Further study is currently ongoing to determine precise quantities and frequency of application to be most effective.
Xiaflex by Auxilium Pharmaceuticals  clinical studies for FDA approval have shown impressive results with intralesional injections of Xiaflex.  Phase III studies showed 67% of patients showed significant improvement.  Significant improvement was counted as a 25% improvement or better from the original measured angle. http://www.auxilium.com/productpipeline/PeyroniesDisease.aspx

Combination Therapy:

Source

Larson/Levine
Department of Urology, Rush University Medical Center, Chicago, IL 60612, USA.

Abstract

Non-surgical treatment of Peyronie’s disease (PD) has come a long way since it was first described in 1743. A myriad of treatment options are currently available, including oral, intralesional and external energy therapies. The purpose of this article is to review the contemporary literature on non-surgical therapies for PD, and where possible, focus on randomized, placebo-controlled trials, as well as review the latest guidelines for the management of PD from the International Committee on Sexual Medicine, which conveyed its findings in July 2009.  At this time, it appears that a combination of oral agents and/or intralesional injection with traction therapy may provide a synergy between the chemical effects of the drugs and the mechanical effects of traction. Until a reliable treatment emerges, it does appear that some of the non-surgical treatments discussed can be used to stabilize the scarring process and may result in some reduction of deformity with improved sexual function.

New Xiaflex Video

My wife and I are in the new Xiaflex public awareness video about Peyronie's.  Wow I really had a bad hair cut when I watch the video.  Oh well, hope it raises awareness and men become pro-active in their treatment.  You have to wait for a 10 second countdown then click on the button; Watch Video.
https://peyronies-disease.xiaflex.com/testimonials.php

I did not participate in the Xiaflex clinical trials, but was filmed to give support for Peyronie's patients.  They had a hard time finding men to go on camera.  It is an embarrassing problem for most guys.  I got over that a long time ago, when I went on youtube and talked about this.

What is the Big Deal with Serrapeptase?


Almost every site that talks about alternative treatment approaches to Peyronie's, recommend using Serrapeptase.  Many recommend using it alone or in combination with other enzymes and supplements.  If you are going to add this product to your treatment program, then definitely read this article.

One of the big problems with the Serrapeptase approach, is the lack of double blind placebo studies to support it's use.  Let's review some of the information available to us, and make an informed decision on whether it is worth while.

Serrapeptase has been studied for several different conditions with positive results.
  
Serrapeptase came out very favorably in this study to reduce buccal swelling after surgery.
 http://www.ncbi.nlm.nih.gov/pubmed/6366808

Sixty five percent cases showed significant clinical improvement with Serrapeptase treatment for carpal tunnel.
 http://www.ncbi.nlm.nih.gov/pubmed/11225219 

 There was a significant reduction in the extent of cheek swelling and pain intensity in the serrapeptase group in molar extraction.
 http://www.ncbi.nlm.nih.gov/pubmed/18272344

  It is concluded that Serratia peptidase has anti-inflammatory, anti-oedemic and fibrinolytic activity and acts rapidly on localized inflammation.
193 subjects suffering from acute or chronic ear, nose or throat disorders, with treatment lasting 7-8 days.
http://www.ncbi.nlm.nih.gov/pubmed/2257960 

Regression of fibrinolysis in scalded rats by administration of serrapeptase. Biochem. Pharmacol. 31:2861-2866,1982

In Russia Serrapeptase has been used for treating ailments as diverse as Alzheimer's to Tuberculosis.  The studies on these area's are not readily available, so I could not include them. in this article.  

There are no specific studies using Serrapeptase in Peyronie's treatment, but the above studies, do show that it is effective for treating pain, inflammation, and fibrinolysis.  I have read a lot of testimonials, on its' effectiveness, but those are not verifiable through testing and sometimes, people just get better.  The human body is amazing, with its' healing abilities.

The Serrapeptase Theory: 
If you have read some of the articles at this blog, you will know that I took Serrapeptase and am one of those testimonials and success stories.  I can't reproduce my results though in a scientific study, since I'm just one guy that it seemed to work on.

The idea behind Serrapeptase is this;  The silkworm uses the Serrapeptase enzyme in its' saliva to dissolve the dead silk cocoon, at the time it is hatching out to become a moth.  Serrapeptase is a powerful proteolitic enzyme that scavenges dead tissue and reduces inflammation.  The idea of introducing it into the blood stream to scavenge fibrin (dead scar tissue) in the Peyronie's plaque is sound, it just isn't a proven science at this point.

Enteric Coating
When I took Serrapeptase, there was a lot of information about enteric coating that I was unaware of.   Serrapeptase should be taken on an empty stomach.  The reason for this is to avoid stomach acid that digests food, and would also digest the capsule before it can leave the stomach and enter the digestive tract.

Most Serrapeptase brands have enteric coating to help the capsule survive the stomach acid.  I recently did a study on what enteric coating consists of.  The most popular enteric coatings consist of HPMCP (hydroxypropyl methylcellulose phthalate), and CAP (cellulose acetate phthalate)  These enteric coatings are part of a family of chemicals that are plasticizers.  Phthalates are basically a thin plastic coating that protects the contents from dissolving in the stomach.

I am not happy that I ingested plastic, while trying to treat Peyronie's, and improve my health.  I definitely would not recommend products that include these chemicals in their enteric coating.  There are alternatives though.  

The other protective coatings I found are Acid Armor, which is an extra thick cellulose capsule that is phthalate free.  Arthur Andrew Medical uses this coating on their Serrapeptase capsule.  Robert Redfern's Serra Enzyme also uses a thickened delayed release capsule that is phthalate free.  I also found another enteric coating that is a food grade product.  MAAC (Methacrylic Acid Copolymer) which is considered food safe.  Serracor-NK uses this coating on their Serrapeptase/Natto blend product.

Advocates for Enteric coating test the enzyme capsules in extremely acid conditions, which do not reflect the "real life" conditions of an empty stomach.  The capsules by themselves, when taken on an empty stomach do not induce stomach acid production.  Acid production occurs when the stomach fills with food and the lining becomes stretched.  Taking Serrapeptase on an empty stomach will typically see the capsule enter the intestines in 30 minutes or less.  Once in the intestines, the capsule dissolves and the enzyme is absorbed into the body.

How is Serrapeptase Measured?
Serratiopeptidase units or SPU's are a measurement of activity per capsule.  Serrapeptase is not based on weight.  A capsule of Enterez brand contains 30 mg., while Dr's. Best contains 500 mg, but both brands contain 120,000 SPU's per capsule.  So you can see that weight alone does not indicate activity level.  When purchasing Serrapeptase look for the activity level.  A listing in mg.'s is not a relevant measurement.  

The most effective way to deliver Serrapeptase is in encapsulated powder capsules.  Hard tablets typically are heated during production and the heating decreases the activity of the enzyme.  Raw powder is hard to mix, it is inconvenient and most of it would be digested in the stomach.

Which Brand is the Best Buy?
Price comparison is based on the MSRP (manufacturer's suggested retail price).  I broke down the cost by the activity level of each brand.  Cost per 100,000 SPU's

Solaray came out to $1.09 per 100m SPU,  Dr.s Best was $.69 per 100m SPU on their 40 SPU capsule and $.48 per 100m SPU on their 120 SPU capsule.  Source Natural's price was $.62 per 100m SPU.  Vitamin Shoppe and Enerex were both $.55 per 100m SPU.  All of the brands just mentioned use traditional enteric coating.  Solary had the lowest price per bottle of capsules, but also the lowest activity level per capsule.  It ended up being the highest price, based on activity.

Drum Roll Please; the winners are:
Arthur Andrew Medical - Acid Armor
250 SPU capsule - 36 cents per 100,000 SPU

 Robert Redfern's Serra Enzyme delayed release
250 SPU capsule -  29 cents per 100,000 SPU

Based on this information, the best brands without phthalates and the the highest activity levels, are also the best buy.

Combination enzyme products are:
Serracor NK - MAAC enteric food safe phthalate free coating
Blockbuster All Clear - delayed release phthalate free coating
Neprinol - Acid Armor, phthalate free

Serranol - Couldn't find information on this brand capsule.

Enzyme combination products will be written on in a future article.  More research is needed for these products.

Peyronie's disease, Erectile Dysfunction, and Sildenafil Citrate

Every man seems to have a different experience with Peyronie's disease.  Some experience pain, while other do not.  Severity of deformation varies widely, with a bend sideways or up or down or bell shaped deformation.  No two men are exactly alike.  Some men experience varying degrees of erectile dysfunction from mild to severe.  Erectile dysfunction is frequently associated with Peyronie's disease.

There is no consensus among patients or doctors on how to treat this.  There has been the belief that Viagra (Sildenafil Citrate) may contribute to PD.  There has not been a proven clinical connection though at this time.  Some doctors will not prescribe Sildenafil Citrate to patients with PD.  The fear is that the potential risk of further injury during intercourse from Sildenafil Citrate is greater than without it.  

Well, if a man has erectile dysfunction, he is probably not going to be performing sexually, without taking something like Sildenafil Citrate.    In some cases the plaque is large enough to block blood flow, resulting in vascular deficiency.  This causes erectile dysfunction beyond the plaque, which can cause hinging at the point of bend.  Hinging can cause penis fatigue, resulting in a fracture, much like fatigue in metal when it is repeatedly folded or bent.  Taking Sildenafil Citrate with this type of ED would increase the danger of further injury or fracture.

The manufacturers of PDE-5 inhibiters, Sildenafil, Vardenafil, Tadalafil (Viagra, Cialis, Levitra), have cautionary notes in  their package, regarding the use of this classification of drugs for men with Peyronie's disease.  The drug manufacturers did not include men with PD in their clinical trials.

73 men with curvatures less than 60 degrees were given sildenafil, as it was assumed that curvatures less than this would not be as susceptible to penetrative injury.  71% of these men were satisfied with their erections and no new pain or deformity increases were recorded in the group.

PDE-5 inhibitors in experimental use were shown to have a
potential anti-fribrotic effect.  When fibroblasts in human Peyronie's disease were exposed to daily low dose PDE-5 inhibitors it resulted in reduced collagen production.  In animal studies; animals were given sildenafil and vardenafil in their drinking water, shortly after they were injected with an agent that triggers  a Peyronie's type scar.  The PDE-5 inhibitors appeared to substantially reduce the development of fibrotic scar tissue in the animal studies. 


Elevated nitric-oxide levels appear to inhibit fibrosis, which forms the plaque.  Sildenafil elevates nitric-oxide levels in the blood and relax the muscles in the penis, which triggers erections when a man is sexually stimulated.

Another good way to boost nitric-oxide is with Arginine and Citruline supplements.  Beets are a rich source of nitric oxide.  A glass of beet juice every day could be the ticket to better cardio health and reduced scar tissue build up.  A good cardio workout will also boost your nitric oxide levels.

What is the Prevelance of Peyronie's Disease?

Statistics about how many men are affected by Peyronie's Disease vary widely.  The reason for that is, most men do not report it or go see their doctor for diagnosis. Recently Dr. Jon L. Pryor wrote that an autopsy study suggested Peyronie's may have a prevalence of 22 percent.   That's right! He said 22%.  That number indicates that Peyronie's is very under-reported.

He also stated that Peyronie's Disease is fairly common, yet most men and physicians don't know anything about it.  Some men develop Peyronie's in their 30's, but there is an age related increase as men age.


Alzheimer's Update:

My wife's mother has been living with us for the past 4 years.  We have watched her cognitive processes fade away for a long time now.  Mom is really good at hiding things, she has always been a classy lady, she was well read, well traveled
Mom in 1964 at the Pyramids
and sophisticated.  


Recently at a doctor's appointment the doctor asked her:  "What is the President's name?"  She didn't know.  "What is the year?"  She answered, "It's 7 or 11." Again, she had no idea.  Then the next question, "Do you know what town your are in."  Answer; "No idea."  We were shocked, we had no idea that her cognitive impairment was this far advanced.

Within a week, Mom began asking questions like. "Does a bus come by here?  I need to catch a bus to the airport, so that I can fly home to Seattle."  I heard her testing doors at 4:00 a.m.  She was trying to escape, to go somewhere in her past.  There was no home in Seattle for her. It had been sold long ago.  In her mind she had been on a long vacation, it was now time to go home.  Mom cannot prepare meals, drive a car, or take care of herself in the bathroom anymore.  In her state of mind, she believes that she needs to find a job.  She needs to become a productive part of society and contribute her part in working and finances.  She does not realize that reality is something far different than what she perceives.

It is really heartbreaking for us, her family, to watch her fade away and decline.  Three weeks ago, Mom made good on her escape attempts.  We ran to the grocery store and upon returning, she was gone.  The doors were all unlocked and open.  The dog didn't go with her, he stayed home.  Mom was gone.  We frantically searched the house and yard, shouting for her, then I recruited the neighbor to go one direction, while I went the other.  My wife called 911.  It was over 100 degrees out and Mom is 85 years old and very frail.  We knew she wouldn't last long out in the heat.  Within 5 minutes we received a phone call from a police officer.  He had picked Mom up 4 houses down from ours, but she could not tell him which one she lived in.  He took her to the local hospital emergency room and had just dropped her off there.

We jumped in the car and picked her up at the hospital.  The staff told us she looked great for a 114 year old.  They asked her when she was born.  She told them Jan. 1st, 1900.  It made it difficult to figure out who she was, with that birth date, it did not connect her name in the computer.

Now we knew that we were prisoners in our own house.  We couldn't leave Mom alone ever.  This was a 24 hours a day dilemma.  Within a week we found a Alzheimer's home, where she will receive 24 hour professional nursing care.  Mom has been there for two weeks now.  They have a bus stop in the side yard for the folks living there to make an escape when needed.  The difference is the bus stop is behind the fence and no bus ever comes.  The residents will go out and sit at the bus stop, then eventually they forget why they are there, or they get hungry. 

The really difficult part of this nightmare, is Mom doesn't really remember me anymore.  She doesn't recall me asking her for her daughter's hand in marriage, 20 years ago. (I never knew her husband, he had passed away years before.) She can't remember so many of the fun vacations we took together, and the great memories we have built over the last two decades.  She does remember our son, but does not recognize the young man that he has become.  She remembers him as a little boy.  She clings desperately to my wife, who represents the last fragments of her memory.  The things she imagines are just as real as the reality that surrounds her.  

One blessing that we have are the wonderful angels that care for these older folks as they cling to life, but lose their minds.  It is difficult to imagine living and working in an Alzheimer's care center, where there is no hope of recovery.  When a patient walks through that gate, it is a one way trip.  This is the last bus stop for them.  They are disembarking from their life as grandparents and parents, they were productive members of society.  We thank God everyday for the people that work to provide dignity and as much freedom as possible, in the twilight of  life.  

We know that Mom will not recover, this is a terminal condition.  She often says, "I'm going to get better."  But we know better.