Todays Thoughts

12/13/11

Last week was a bad week for Bernie he fell daily and a couple of days several times, maybe he’s going through another progression period. The Botox is working and his eyes are staying open as long as he’s not too tired, he does seem to be more tired these days and I am thinking that is due to the progression also. Again I find myself wishing I knew someone who has been through this as a guideline for me. I just don’t know what to expect next, I watch him every day so sometimes it’s harder than others to really notice the subtle differences, but lately it is easy to see the deterioration in his condition.

Sleeping more eating less, not keeping up with daily hygiene, less and less trying to talk with others. Such a shame to see a outgoing upbeat social butterfly turn into this.

Social Security Expands Compassionate Allowances Conditions

I found this while searching on the web, I am happy they are recognizing these illness and making it easier for us to get these benefits.

Social Security Expands Compassionate Allowances Conditions
For more information on the Compassionate Allowances initiative, please visit
New Compassionate Allowances Conditions
Paraneoplastic Pemphigus
Multicentric Castleman Disease
Pulmonary Kaposi Sarcoma
Primary Central Nervous System Lymphoma
Primary Effusion Lymphoma
Angelman Syndrome
Lewy Body Dementia
Lowe Syndrome
Corticobasal Degeneration
Multiple System Atrophy
Progressive Supranuclear Palsy
The ALS/Parkinsonism Dementia Complex Malignant Multiple Sclerosis Michael J. Astrue, Commissioner of Social Security, today announced 13 new Compassionate Allowances conditions involving the immune system and neurological disorders. The Compassionate Allowances program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years. Commissioner Astrue made the announcement during his remarks at the U.S. Conference on Rare Diseases and Orphan Products in Washington, D.C. "Social Security handles more than three million disability applications each year and we need to keep innovating and making our work more efficient," Commissioner Astrue said. "With our Compassionate Allowances program, we quickly approved disability benefits for more than 60,000 people with severe disabilities in the past fiscal year. We have made significant improvements, but we can always do more." The Compassionate Allowances initiative identifies claims where the nature of the applicant’s disease or condition clearly meets the statutory standard for disability. With the help of sophisticated new information technology, the agency can quickly identify potential Compassionate Allowances and then quickly make decisions. Social Security launched the Compassionate Allowances program in 2008 with a list of 50 diseases and conditions. The announcement of 13 new conditions, effective in December, will increase the total number of Compassionate Allowances conditions to 113. The conditions include certain cancers, adult brain disorders, a number of rare genetic disorders of children, early-onset Alzheimer’s disease, idiopathic pulmonary fibrosis, and other disorders. The agency announced a small grant program for graduate students that will help Social Security improve its list and has recently awarded an approximately $1.5 million grant over a five-year period to Policy Research, Incorporated (PRI) through the Disability Determination Process Small Grant Program. This new program aims to improve the disability process through innovative research by graduate students who will receive small stipends for their work. In addition, the agency recently streamlined its online disability application for people who have a condition on the Compassionate Allowances list. www.socialsecurity.gov/compassionateallowances.

12/7/11

12/7/11

Last Friday Bernie received his second round of Botox injections for his eyes. It had been 4 months almost to date since his last injections so that was good. Dr. Molho stated he was please that it worked for Bernie because he really hasn’t been able to do much for him until now, I think it frustrates the doctors too that there isn’t much they can do for a good percentage of the people with this condition.

It is equally as frustrating for us, I think it is hard for some people to understand that there is not much that can be done for people who suffer this disease, treating the symptoms is all there is at this point. In the 6 years Bernie has dealt with this we have tried everything we’ve read about or heard about. We have tried high doses of many different meds (per doctor’s instructions) which did not help and had side effects so lower more tolerable doses have been maintained. We have tried minerals, vitamins, herbs, and we added certain foods to his diet but no benefits were noticed. I spend many hours researching for new things to try, I maintain a healthy diet for him with fruits, yogurts, vegetables, and lean meats; I encourage plenty of water (which I have always felt Bernie did not get enough of) and exercise, mostly walking. Bernie still works out a bit on his bow flex machine but it is difficult for him to maneuver these days, it is a safe machine for him so I don’t worry too much, just about him falling as the machine is in the basement.

I’m trying to keep things in perspective while trying to follow his progression, maybe someday it will help someone else who is going through this. Maybe give them some guidelines, so hope some encouragement. I know I wish I had a place to go to read about someone else journey to learn and maybe find some hope.

Every time I start to post something comes up and pulls me away (like now) I am hoping to find some time where I can sit and write without interruption, until then……  

Came across another article on PSP

I've been searching online for something that describes PSP in more detail than simply an outline of the symptoms, but NOT page after page of clinical-sounding information. One doesn't go far enough in explaining the disease and how to deal with it, but the other would not likely be read by the typical caregiver.

Since I couldn't find exactly what I wanted, I took the best information I could find (the italicized portions below are directly from psp.org), combined it with what we've learned from dealing with our own patient, and put together the following information.

PSP SYMPTOMS IN A NUTSHELL

PSP (Progressive Supranuclear Palsy) is a neurodegenerative brain disease that has no known cause, treatment or cure. It affects the frontal lobe of the brain and the nerve cells that control walking, balance, mobility, vision, speech, and swallowing. Five to six people per 100,000 will develop PSP with approximately 20,000 known cases in the U.S. PSP displays a wide range of symptoms which progressively worsen with time. Symptoms may occur at various stages of the disease and vary widely with each individual patient and with the specific type of PSP the patient has. Typical lifespan after onset of symptoms is 6-10 years, with a reported range of 2-17 years. Cause of death in patients with diagnosed PSP is usually a result of aspiration pneumonia, infections or from injuries resulting from a fall. .

COMMON EARLY SYMPTOMS OF PSP
The most common first symptom is loss of balance while walking. This may take the form of unexplained falls or of a stiffness and awkwardness in the walk that can resemble Parkinson's disease. Other common early symptoms are forgetfulness and changes in personality. The latter can take the form of a loss of interest in ordinary pleasurable activities or increased irritability and cantankerousness. These mental changes are misinterpreted as depression or even as senility. Less common early symptoms include trouble with eyesight, slurring of speech and mild shaking of the hands. Difficulty driving a car, with several accidents or near misses, is common early in the course of PSP. The exact reason for this problem is not clear.

Still other symptoms that may occur at some point in the disease are fatigue, incontinence, rigidity of the muscles, a softening of the voice, a variance in body temperature and an inability to write legibly. In some cases the patient may exhibit episodes of inhibition and inappropriate behavior.

PSP can only be confirmed post-mortem, but once a clinical diagnosis of probable PSP has been made, the patient and family may realize in retrospect that some of the problems the patient had been having for quite a long while prior to diagnosis were attributable to PSP.

Because of similarities in some of the symptoms, the patient with PSP is often mis-diagnosed as having Alzheimer's Disease or Parkinson's Disease. PSP is classified, in fact, as a Parkinson's-Plus disease although there are distinct differences in PSP and Parkinson's.

LOSS OF BALANCE AND FALLING:
PSP patients are prone to losing their balance and should never be allowed to stand or walk without assistance. Broken bones resulting from a fall complicates the life and care of a patient with PSP so extreme caution should be exercised to prevent falls. A walker is not advised for the patient with PSP unless someone is close behind the patient AT ALL TIMES. Since those with PSP usually fall backwards, a walker could possibly cause further injury in a fall.
Shoes with smooth soles are often better than rubber-soled athletic shoes. In many people with PSP, the gait disorder includes some element of "freezing," a phenomenon that makes it difficult to lift a foot from the ground to initiate gait. Such people can fall if they move their body before the foot moves. In these cases, a smooth sole could make it easier to slide the first foot forward. Shoes with a lifted heel might also help prevent the backward fall.
While Physical Therapy has not been shown to IMPROVE the symptoms of PSP, it's important for the patient to get as much exercise and to walk (with assistance) for as long as possible to avoid the muscle atrophy that occurs from lack of use. Extreme caution should be used to prevent the patient from falling and perhaps taking along the one escorting him/her to the ground.

DIFFICULTY SWALLOWING:
The disease impairs the ability to swallow (dysphagia) and the greatest risk is with thin liquids which may be aspirated into the lungs. This can eventually cause aspiration pneumonia, the most common cause of death in patients with PSP. Tucking the chin when swallowing liquids may help prevent choking in the earlier stages of the disease and thickened liquids are recommended as the disease progresses. Pills may need to be crushed and placed in applesauce or similar food. Patients with PSP are prone to “mouth stuffing” and "rapid drinking" which often causes them to choke. Small bites should be taken and each bite should be swallowed before taking another bite or drink. They may also get choked from improper chewing, from hard -to-chew foods such as steak, or from “mixed-textured” foods containing both liquid and solids. Foods such as vegetable soup, cold cereal and uncooked dairy products should be avoided. Patients may also choke on their own saliva. Carbonated beverages and sparkling water may assist in cutting the phlegm that accumulates in the throat. As the disease progresses, pureed food may become necessary and some patients may eventually require surgical insertion of a feeding tube (peg) although clinical studies have not shown that a feeding tube will completely eliminate the possibility of aspirated pneumonia.

VISUAL PROBLEMS:
In most cases, the visual problem is at least as important as the walking difficulty, though it does not appear, on average, until 3 to 5 years after the walking problem. Because the main difficulty with the eyes is in aiming them properly, reading often becomes difficult. The patient finds it hard to shift down to the beginning of the next line automatically after reaching the end of the first line. This is very different from just needing reading glasses. An eye doctor unfamiliar with PSP may be baffled by the patient's complaint of being unable to read a newspaper despite normal ability to read the individual letters on an eye chart. Some patients have their mild cataracts extracted in a vain effort to relieve such a visual problem.
Yet another eye problem in PSP can be abnormal eyelid movement -- either too much or too little. A few patients experience forceful involuntary closing of the eyes for a few seconds or minutes at a time, called blepharospasm. Others have difficulty opening the eyes, even though the lids seem to be relaxed, and will try to use the muscles of the forehead, or even the fingers, in an effort to open the eyelids (apraxia of lid opening). About 20 percent of patients with PSP eventually develop one of these problems. Others, on the contrary, have trouble closing the eyes and blink very little. While about 15 to 25 blinks per minute are normal, people with PSP blink, on average, only about 3 or 4 times per minute. This can allow the eyes to become irritated. They often react by producing extra tears, which, in itself, can become annoying.

When the blink rate slows, the eyes often become glazed and wide-eyed, giving the patient a startled look or the appearance of “staring into space”. Involuntary closing of the eyes is also a frequent occurrence. It becomes increasingly difficult for the patient to read or to watch TV. Dinner plates may need to be placed on a “riser” in order to bring the plate into the patient's line of sight.

SPEECH:
A patient with PSP frequently repeats the same word or phases involuntarily (palilalia) and stuttering may also occur as well as “parroting” phrases or questions spoken by another person. It may take awhile for the patient to form a sentence, so it's important to give him/her time to speak without interruption. An erroneous impression of senility or dementia can be created by the PSP patient's combination of speech difficulty, slight forgetfulness, slow (albeit accurate) mental responses, personality change, apathy and poor eye contact during conversation. Dementia of a sort does occur in many people with PSP, however, and is discussed below

BRAIN FUNCTIONS:
The PSP patient usually remains alert to his or her surroundings and understands all that is going on around him/her. Memory is not affected as in Alzheimer's patients, but may falter at times, especially when trying to speak and the right words won't come. As the disease progresses it becomes quite difficult for the patient to have a “normal” conversation and great patience is required on the part of the listener. PSP patients may display signs of mild dementia, but in some cases the slowness of speech and difficulty communicating only gives the impression of dementia. Other patients, especially those with a specific type of PSP, develop actual and more severe dementia. The dementia of PSP is characterized by slowed thought and difficulty synthesizing several different ideas into a new idea or plan. Cognitive reasoning is affected and PSP patients may not be aware of what they should or should not do in their own best interest. They may “THINK” they can walk by themselves or that they don't need help doing certain things even when there's a risk involved. All precautions available should be used to protect the patient from their own poor judgment.

No treatment or cure is currently available for PSP, but medications may be available to treat some of the symptoms such as dry eyes or depression. A doctor familiar with this disease should be consulted for recommendations of these medications as PSP patients often experience adverse effects from certain drugs.

article I came across

This is from an article about Richard Rainwater a billionare who was diagnosed with PSP;

The nightmare of PSP

Even after retreating from dealmaking, Rainwater wasn't through making Texas-size wagers. In December 2005 a Fortune story, "The Rainwater Prophecy," reported that the billionaire, anticipating a catastrophic oil shortage, had gone long on energy stocks and oil futures, to the tune of several hundred million dollars.

To those who knew Rainwater, this play was somehow ... different. In Fortune, Rainwater vented his concern about "the survivability of mankind." He worried openly about sounding like a nut, but he had Moore install an emergency generator and 500-gallon tanks for diesel fuel and water on her South Carolina farm, just in case.

As it happens, like most of Rainwater's bets, this one paid off. Energy prices climbed, and Rainwater, deciding that a crisis wasn't imminent, unloaded his holdings for a handsome profit. But looking back, Moore wonders whether this fixation wasn't an early sign of her husband's disease, given that obsessiveness, loss of inhibition, and mood swings are among the psychological effects of PSP. (Rainwater wouldn't be diagnosed until three years later.)

Progressive supranuclear palsy is a riddle wrapped inside a nightmare. The disease is rare, striking about six people in 100,000, usually in their fifties or sixties. Frequently misdiagnosed as Parkinson's disease, it wasn't even identified in medical literature until 1963. Its cause remains unknown, and its effects are devastating.

It's personal: 5 executives searching for cures

PSP attacks nerve cells in the brain, causing something called tau -- a protein that is part of the normal neuron infrastructure -- to pile up in clumps. The resulting destruction impairs mental processing, balance, coordination, and vertical eye movement; two hallmarks of the disease are difficulty looking downward and terrible backward falls. Physical stiffness progresses, causing slurred speech, a blank facial stare, and trouble swallowing.

Worst of all for the patient, there's a painful lag between the deterioration of the brain and the body. Awareness, memory, and thoughts remain largely intact, often bottled up by an inability to wield them. "People are locked out of expressing," says Dr. Joel Kramer, a neuropsychologist and co-founder of the UCSF dementia center. Over time the dementia worsens. Patients become virtually helpless. Most die from choking, suffocation, or pneumonia.

In March 2009, when Rainwater was diagnosed in San Francisco, there were no treatments for PSP. Rainwater characteristically began scouring the Internet for hope; he found little comfort.

"I'm dying, Precious," he told Moore.

"We all are," she replied. "No one can tell you when you're going to die."

Accompanied by Dan Stern, Rainwater and Moore traveled to the University of Aberdeen in Scotland, where doctors were treating Alzheimer's and Parkinson's patients with methylene blue, an experimental drug. Rainwater began taking the medicine, which was thought to combat the buildup of tau, but it didn't help.

Around that time, Rainwater's family began organizing a new research program. Later named the Tau Consortium, it was a classic Rainwater-style deal: creative, ambitious, risky, and collaborative.

Moore and Stern asked Miller and Kenet to round up a medical dream team that Rainwater would bankroll. About 25 experts from around the world, ranging from bench scientists to clinicians, gathered in New York City in May 2009 for a three-day meeting to organize a research program. The group, which includes a Nobel Prize winner, has met four times since to share their findings. "I don't think there's ever been such a broad group of people focused this way in science," says Miller. "It has a Manhattan Project quality to it."

The scientists are attacking PSP on multiple fronts, studying elements of the disease in mice, flies, worms, and human cells -- Rainwater's cells, that is. Skin taken from Rainwater's leg -- presumably containing markers of his particular disease -- has been converted to stem cells for testing existing chemical compounds. If lab work shows promise for halting the accumulation of tau, an experimental treatment would be rushed into the clinic -- with Rainwater as the first patient.

As personal as all this seems -- with more than $20 million committed so far to try to save a single dying man -- it is, in actuality, far more likely to help others. Though they are widespread, brain diseases attract little private funding because progress is so difficult; they're regarded in the philanthropic world as a black hole. Rainwater's spending is "one of the most significant investments in dementia research by an individual ever," says Miller.

The research funded by the Tau Consortium assumes that tau is the cause of disease, not merely a byproduct, although that issue remains a subject of scientific debate. Abnormal tau clumps are also present in Alzheimer's patients. This means that Rainwater's initiative could contribute to treatments for them too. Says Miller: "We believe tau is the holy grail of dementia. This has broad implications. Treatment for Richard will be a treatment for the world." He acknowledges, though, that finding a cure in time for Rainwater will be "very difficult."

todays blurb

11/10/11

Bernie’s eyes are closing more and more, we have about 2 weeks before we go back to the doctor for more Botox ejections. Funny how his blink rate has slowed down but his eyes shut on their own all the time, one would almost think that if the blink rate declined that the eyes would stay open! He tires easily; even walking around the mall seems too much for him now.  Stairs are difficult and getting off the couch is not easy either. I am starting to look into the power recliners; I think that is the next step.

It’s hard to try to guess what might be next, I wish someone who has been through this before would have a blog or posting outlining what they went through, even though “everybody” is different it could still be a guide. We are into our 6^th year with this and the life expectancy for PSP is 7-10 years, and I would like to know if that is a reliable guide line. Not that I would do anything much differently except maybe try to travel more, while it not too hard to get around. We do live each day as it comes and try not to think about what tomorrow will bring, but I guess most people over fifty do that…you know the second phase of life! The first fifty we don’t think too much about, but after turning 50 we start to think it’s time to slow down the clock and try to enjoy life a little……

10/24/11

Noticing now that Bernie’s eyes are starting to close again on their own. Not as often as before the injections but it is getting there. I started to notice about 2 weeks ago that he was prying them open with his fingers again, and lately he has been doing it more and more. We are scheduled to go back to the doctor early December but just received notice from the insurance company that they have denied further Botox treatments as they deem it experiment. I am going to fight this and put in a grievance just hoping that they change their refusal to an approval.

Thoughts

10/19/11

Well we are done with 5 visits of PT and the insurance company won’t approve anymore, at this point I don’t think that matters. We have learned a few things to do at home and I believe as well as the therapist believes that PT is what you do every day at home. Bernie needs to slow down and think before he moves and he is finding that difficult. The problem with PSP is that your brain is telling your body what to do but your body doesn’t get the signal fast enough anymore or your body can’t do the task anymore. For instance when your brain is telling your feet that you are going to walk but your foot/feet won’t/can’t move but you don’t know your feet are frozen, your upper body leans forward as it would when you take a step but since your feet are not following you end up falling, and when you are falling you don’t have the coordination or reflex to put your hands out so you land hard. Standing up is also an issue, gets harder and harder to pull yourself up so you have to really try to throw your weight behind it and when you finally rise up your doing so at a faster pace and tend to fall forward with the momentum. Getting in and out of the car is difficult, moving your legs which are stiff and sore and having your balance compromised makes even that a difficult task. Everything is so much harder to do with PSP; it really steals your life in that sense. Talking is also difficult as your voice just won’t work anymore, words are slurred and mumbled and the voice volume is barely existent, so now it is just easier to not speak at all then to be frustrated when trying to speak. These are things as a caregiver you will see happening to your loved one, yet you need to stay strong and positive, for both of you.

PT

10/3/11

Bernie has started PT again; he has gone through several series of PT over the last 5 years. For the most part I don’t think either one of us felt it was doing much good. In the beginning he would drive himself back and forth but as his condition progressed and he was no longer able to drive I would take him and that is when I was able to see what was going on. The series of exercises they were having him do I felt were not beneficial to him, and although I am not an expert and have no degree I don’t think sitting on a large ball and lifting your leg and reaching for your toes is a particularly a safe position for people with balance issues. After speaking with the therapist and trying to explain what his needs were she told me she had experience with treating people with his condition (but I don’t believe her). Recently the PA at the movement disorder center recommended PT again telling us it would be helpful with the increased falling Bernie was experiencing. I told him my concerns with going again and he told me I would have to look for someone with specific knowledge on PSP or Parkinsonism. After three weeks of looking and phone calls I settled on Sunnyview Rehabilitation Center in Schenectady, and both Bernie and I are please. We met with a therapist for an evaluation and I had brought literature on PSP and what specifically was happening in people with PSP. After the evaluation we set up a series of appointments for PT, our first one being last Friday. On our first visit the first thing the therapist said to me was she read my pamphlets and what had occurred to her most was that PSP caused backwards falls…..and asked if anyone had ever tried lifts in Bernie’s shoes!! No one had, so she went and got the lifts and put them in his sneakers and Bernie said he noticed a difference as soon as he stood up…so if you have not tried them please do……He says he feels more stable now, not so wobbly like he’s constantly going to go over backwards. This is the difference between therapist who truly want to help and research conditions before starting. She then work mainly with his balance issues, footwork and walking, it was a eye opening appointment and I can’t wait to see what she has in store next.

Todays Thought

9/19/11

Still more falls, and this particular weekend was especially bad, Bernie’s balance was way off. He fell Friday night down 2 stairs and has quite the contusion on his thigh, and again hit an elbow. He did not have the pads on because it was the middle of the night and he does not sleep with them. Our bathroom (on the main floor) should be done in a week to 10 days, and then he won’t have to go down stairs to use the facilities. I will also be moving the TV from the basement upstairs also, so he will have no reason to go down to the family room in the basement, we are at that point where we have to make major changes to keep him safe. The TV in the basement has a home theater system hooked up to it so he likes to watch things downstairs but the stairs are unsafe so he will have to make some adjustments too. He is generally slowing down in all areas, there are noticeable progressions almost weekly, unless you are with him a lot you might not notice them but they are there. He will be starting another round of PT soon so I am hoping that it will strengthen his legs and arms so he can hopefully be better balanced, I just don’t know if that will help. Although we try to take it one day at a time I sometimes wonder if the progression picks up at this point. After having this condition for 4-5 years and neuron continue to die off it just seems like it will get worse at a quicker pace. I wish I knew someone to talk to who has been through this, just to see their story and timeline, it might help me to prepare for what’s ahead.

Still Eye Issues

9/12/11

The Botox injections are helping with the involuntary closing of Bernie’s eyes, however I have noticed that his blink rate is significantly less than before and much less than what is required. His eyes are now red and dry, and he has also developed an infection. The optometrists says it is because his eyes are not blinking which would lubricate the eyes normally. So is this because of the Botox injections or again a natural progression as it could be either. That’s what makes this condition so difficult, deciding what is progression and what is considered side effects. We go back to the neurologist in December so hoping he can shed so light on this.

Bernie has decided he wants to wear elbow pads to help with his falls, he seems to fall mostly on his left side and bang that elbow, and it has been bruised of months.  I am looking into a better elbow pad at this time because he bought a set at Wal-Mart for extreme sports and although they do help somewhat I would like to see if I can get something that is a better fit, these slide down on his arm. He has fallen on it so much that he has bone chips floating around it, I am surprised that he has not broken it yet. That is one of my biggest fears it that he will fall and break a bone whether is a hand, elbow, shoulder, hip, or God forbid his head, it could set him back to the point where he might not recover fully.

I am trying to find some time where I can sit and put more thought out there but for now all I have time for are these tidbit.

God Bless,

Kelly

8/24/11

Time is flying by, we just move our youngest daughter off to college this past weekend so the house will be quiet for awhile. Hard to believe that the last one is off, where does the time go? One less at home to help keep an eye on Bernie but we’ll get by, we can’t make the children responsible for his care at this point but it was nice to know she was there and helped him out whatever he needed.  It also gave me peace of mind knowing she was home with him, my son is still at home although he works and we are not sure when he’ll be leaving us but I know he is planning something (good for him). I don’t think we are at the point where we need outside help to come in but I am thinking that it is not far off.

We are having our bathroom remodeled and they are scheduled to start this coming week, I am really looking forward to that, the bathroom is a dangerous place for people with this type of disorder. I have noticed that Bernie does not shower as often as he use to and mentioned it to him, he said he doesn’t feel safe in the shower, too many falls. I am hoping the new bathroom will make him more comfortable, we are adding several hand bars and a seat.

He called me the other day at work (woke up from a nap and was disorientated) wanted to know where I was…. told me he had lost our dog. I had to talk to him a bit and settle him down but he came around. I have noticed this lately when he sleeps during the day, he wakes up and is unsure of things, this doesn’t happen after a full night’s sleep just the naps, and wonder if anyone else has experienced that? He can also be very agitated upon waking from a nap yelling at times.

Now I am babbling, trying to put a post out, I wish I had time to sit and really compose  a post but it seems like I just have little snippets of time to put my thoughts down so I apologies for these scattered thoughts, I will try harder in the future.   

Take Care and God Bless

Issues Arise

8/15/11
This past Saturday Bernie told me he was having a hard time seeing, things were blurry. He said he noticed it about a week after the injections, so is this a side effect? I did some research and it is really not a prominent side effect although there are some that state it could be, mind you most of these reviews were from people have cosmetic surgery. Blurry and double vision are considered a symptom of Progressive Supranecular Palsy so is this just a progression of his condition that coincidently came on after the injections? I’m not sure.

Progressive Supranuclear Palsy
Symptoms;
The most frequent first symptom of PSP is a loss of balance while walking. Individuals may have unexplained falls or a stiffness and awkwardness in gait. Sometimes the falls are described by the person experiencing them as attacks of dizziness.
Other common early symptoms are changes in personality such as a loss of interest in ordinary pleasurable activities or increased irritability, cantankerousness, and forgetfulness. Individuals may suddenly laugh or cry for no apparent reason, they may be apathetic, or they may have occasional angry outbursts, also for no apparent reason. It must be emphasized that the pattern of signs and symptoms can be quite different from person to person.
As the disease progresses, most people will begin to develop a blurring of vision and problems controlling eye movement. In fact, eye problems usually offer the first definitive clue that PSP is the proper diagnosis. Individuals affected by PSP have trouble voluntarily shifting their gaze downward, and also can have trouble controlling their eyelids. This can lead to involuntary closing of the eyes, prolonged or infrequent blinking, or difficulty in opening the eyes.
Another common visual problem is an inability to maintain eye contact during a conversation. This can give the mistaken impression that the person is hostile or uninterested.
Speech usually becomes slurred and swallowing solid foods or liquids can be difficult.

I will say the injections have helped with the involuntary closing of his eyes so I am pleased there but if blurry vision is a side effect Bernie will have to weigh the pros & cons and make a decision.
A new issue that has come to light is the inability to lean his head back. While taking a drink I noticed that he was having a hard time getting the 1/3 of the drink down, I said to him lean your head back a little and he said I can’t! So I tried to make him do it several times but he couldn’t. I have been putting drops in his eyes this past weekend hoping it might help with the blurriness but he can’t lean back to receive the drops, he needs to lay down to do it. I know we all get a little stiff with age but I think this is more a symptom of his condition then aging.

Well I need to sign off for now but I am hoping I will have some real time soon to report other things, I want to get all I can down in writing because when you live daily with the ins & outs you tend to not notice things or once noticed you consider them the new norm and don’t think to mention it to doctors, or family members.

I am trying to keep Bernie’s family updated on what is happening, however with everyone having their own issues to deal with I sometimes feel like I should keep Bernie’s issues to us. It is a dilemma to be sure….. I want them to know what’s going on so they can make decisions on how they want to approach spending time with him and I want them to know that even though Bernie is handling it so well that he is struggling inside with what is happening to his body. A man who always and I mean always took great pride in keeping in shape and working out and playing sports, and then to be hit with this depilating disease has taken both a physical and mental toll on him. I don’t want anyone to have regrets on should have could have but didn’t.

Botox Treatment

8/5/11

Wednesday Bernie had the botox injections, everything went well. The doctor said it would be about 4 weeks until we see the full effect if indeed it helps him. He could have one of two issues going on with his eyes the first being:
Apraxia of the eyelid - is a disorder caused by damage to specific areas of the cerebrum. Apraxia is characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning, thus difficulty in opening the eyes.

And second;
Blepharospasm - is a muscle disorder that causes involuntary spasms of the muscles around your eye. These spasms can result in uncontrolled narrowing or closing of your eyelid. This could impair your vision, and make everyday tasks such as driving or using a computer difficult.
Early symptoms
If you experience any of these symptoms, you could have blepharospasm:
Dry eyes or watering eyes
Light sensitivity
Increased blinking
Ocular pain
Soreness

We are hoping for the later because the injection don’t usually help with apraxia because that is essentially a brain issue where as the blepharospasm will be helped by the injection. It causes the spasms to halt so opening of the eyes is easier, although it only last for 3 to 4 months so the injections will have to be routine.
Bernie received a total of 10 injections one at the bottom of each eye one at the outside corners of each eye two on the top eyelid of each eye and finally two in the area between the eyes. Besides a slight discomfort at the injection site and a few droplets of blood it was relatively painless. I will say that I do notice a difference already at the area between his eyes, it is much more relaxed and no scowling. I will keep you posted as the weeks go by on whether it has helped him to keep his eyes open and open them easier once he does close them.

Living life

Not sure just who is reading this blog if anyone for that matter, but if you are reading it and it helps you to understand this condition, or if you’ve faced a similar situation and get a tip from me I am happy. I am mostly doing this because of the many people I have spoken with who just want to know what goes on with other in this situation, what might come next, how others cope.
I have mentioned previously that I think my husband has come to a point in this condition where he is not able to bounce back; the progression at this point is a slow steady downhill progression. More falls, more sleeping, more voice deterioration, more eye issues, muscle deterioration and withdrawal. I am sure I can list many more but I think the point is made. My goal now is to spend as much quality time with him and do as much as we can while he is still able. I have to sometimes force him to come with me on little errands just to get him out in the fresh air and to stimulate his senses, he really just likes to sit at home. I wish I could afford to travel with him but we do not have the funds to do so, I know he would love to go to Ireland and I keep my eyes peeled for trips advertized such thinking maybe we will be able to take advantage of it, I hope so. We still have 2 kids in college and a wedding next summer so it won’t be any time in the very near future but it’s always nice to have a day dream. We still have our Friday night date night where we go to dinner, sometimes with family and sometimes alone, but I won’t give it up. We live near Saratoga Race Track and I took him there this past weekend, just for a few races but it was nice to get out, I am planning on taking him a few more times, I think it’s important to stay as active as we can while he can. I would suggest that to anyone going through an illness with a loved one, don’t be afraid to make the effort to go out and do things and see places, even if they give you a hard time about leaving the house, you’ll only regret it later when you realize it is not possible to make those trips. They don’t have to cost anything either, a ride around the lake, a trip to a local park with a book. I feel like I am rambling and I think you get the point.
Signing off for now, don’t be afraid to post a reply, ask a question or two or even tell me if you’re going through something similar.

May God Bless you all,
Kelly

eye follow-up

July 27, 2011

We will be going to the doctors on 8/3 to have Botox injections, I am hoping that this helps and will post results for anyone interested.

Kelly

Eye issues

July 19, 2011

Calling the doctor today…Bernie has been having an issue with keeping his eyes open, they just seem to close on their own and once closed he has a hard time opening. I notice that he uses his hands to try to pry them open, I know this is part of his condition but I am not 100% sure why, I will be investigating that later but for know I am calling the doctor to see if anything can be done. Every morning when I get up I hope it will be the day when he bounces back but I am disappointed every morning because it isn’t happening. I try not to think about what will happen next and just go with what happening now but lately I feel a little scared of what’s ahead, (I am assuming that this is normal) I can only imagine what Bernie is thinking.

Turning Point

I think we have come upon a turning point, it use to be that Bernie would have a bad week or so when a progression would take place, then he would start to get back to his old self again, well that’s not happening. Now it seems that his old self is not there. He looks different now, he actually looks like something is amiss, his eyes are glassy and droopy, I find him sitting with them closed a lot. He rarely talks anymore and when he does it is so hard to hear and understand him. I have seen the changes in him over the years but until now I would not worry so much, I knew that with every progression period that he would change a bit but I don’t think I was prepared for it (as I thought I would be). Even my daughter noticed and is having a hard time with it, it will take us awhile to adjust I’m sure. My children have been great with their father, helping him when he needs it whether that means helping him up after a fall, carrying an item for him or driving him around, they have been great. The other night my son helped Bernie shave his neck, it was bitter sweet to come across them in the bathroom. This man was such an out going fun loving person and the life of every party we attended which makes it even harder to watch this devastating deterioration of this once marathon runner.
I haven’t told him about my blogging yet, I am keeping it to myself for now, I didn’t tell the kids either just two of my sisters who don’t live near me. I’m not sure I want him to read my thoughts yet. We have all been dealing well with this illness but especially Bernie, I am amazed how he fights it each and everyday. I pray for strength for all of us daily and so far those prayers have been answered.
Recent changes;
Droopy eyes, red, watery, and closed a lot to the point of having to use his fingers to open them sometimes
Very low voice, extremely hard to hear, very quiet lately
Many falls over the last few months and states he feels very unsteady
A bit of insomnia, late nights watching TV , can’t say if he’s napping during the day because I am not here but I hope so
Taking much longer to eat a meal, and doesn’t seem to eat as much

Falls falls and more falls

Falls falls and more falls, that what these last two weeks have brought. Bernie is bruised and battered from all the falls he has taken lately the latest of which was this morning in the bathroom. Yesterday he fell out side walking into a shorter chair that he says he couldn’t see. His elbow is really sore, it seems to be the one he is consistently landing on, this hip and thigh on that side too are bruised as well. Does this mean that he needs some one with him at all times? I am thinking yes but that will be so hard to do for several reasons. First I am not home all the time because of my job, second I think he would fight me on this for a while. At all of our pivotal junctures it seem to take me months to get him to see that my ideas are what is safest for him. He fought me on the cane, he fought me on the walker, he fought me on driving, etc. It is so hard for him to live with this everyday and face the limitation this disease has put on him, I give him so much credit though because he fights it everyday.

Body Aches & Pains

7/7/11

When Bernie was first diagnosed he complained of body aches all over. He said his whole body ached like he had played football with professionals and got beat up, this lasted for several years. He would complain now and again about the soreness/stiffness, but hasn’t for the last year or so…well its back. He says his whole body aches again and even his stomach feels like he did 400 sit-ups, it’s been going this past week! Not sure if this means there is a deterioration going on but that is my thought at this point especially since I have noticed some changes in him this last month. I don’t know if the natural progression of PSP/Parkinsonism is that it seems to intensify more as time goes on or because he has lost so much already that it just seems worse now….. He is definitely going through a progression period.

Happy 4th, and what a beautiful day it is. We had a great weekend, several picnics, and Bernie & I hosting one this past Saturday. I am trying to do more and take Bernie more places lately because I don’t want to look back and say I should have. As I watch him through his progression I can see that things are getting more difficult for him so while he is still able I want to keep him going. He does tire more easily so we are usually the first to leave any function we go to, but always happy that we went. Bernie seems to stay by himself more and more whereas in the past he was the life of the party and I always had to drag him home. He is having a difficult time with his voice and can barely be heard, his speaking and swallowing have been an issue from the onset , but have really progressed these last 6 months. The last few days he has complained of body soreness, says that his whole body hurts…arms, legs and even his stomach, says he feels like he did a hundred setups when in fact he has done none. Not sure what that’s about but I will keep an eye on it and see what a couple of days brings. When he was first diagnosed he had a lot of body stiffness and soreness, it either didn’t bother him too much lately or he figured it was par for the course but hadn’t complained in a while and now it’s back. I had him soak in the hot tub this morning and he seemed to think that helped.
I have noticed some real big changes in him lately and am getting worried. When reading on this Parkinsonism they say 10 years from onset to death, from walking to walker to bed ridden so as we approach the end of our sixth year of this I am frightened of what is to come. I will take it a day at a time but still the prospect of a more dramatic change in him seems daunting.

followers

I see I have a few followers already, very happy to hear from you. I plan to spend a little time this weekend getting more familiar with this blogging and get back to you, it just might take me the weekend to figure this out (I might have to recruit my daughters help, she's 19, they know it all on the internet). I am out of my element a bit doing this but am enjoying the challenge so far. I would love to hear your stories, what you've been through, where you are at now, unless you are not comfortable with that then just be a reader.

6/29/11

Funny as it sounds we have purchased a walker! I know I just mentioned that I did not think it would help but surprisingly enough it does. We got it to use around the house and for trips that will include walking more than just from car to restaurant (for example) and he loves it. He tends to walk to fast for his cane and when he stumbles with the cane it really does not aid in helping him stay upright, whereas the walker gives him the stability he needs. We bought a rollator type and it is very sturdy.

Getting started

June 1st, 2011
Bernie fell in early May broke 3 ribs, can’t believe it what a setback. I was having him walk several times a week since March and noticed a difference in his overall mood, and health. He was walking better and seemed stronger, but since falling lost all that he had gained. I am not sure what to do at this point for his stability (falls) I do not think that a walker would necessarily be better at this point unless it was a much bigger and weighted, but again once he starts to go over I don’t think that there is much that will keep him on his feet.
I don’t want to blame all of his issues on his illness as we all develop health issues as we age but the things that I have noticed(some are not actual symptoms and some are not 100% of the time)
• Shuffling gait body aches & pains, stiffness
• Loss of balance while walking
• Frequent falls – mostly backwards
• Swallowing difficulties & choking
• Fatigue, loss of strength
• Tremors at times (mostly hands)
• Forgetfulness, difficulty finding words at times
• Urinary incontinence
• Low voice volume
• Difficulty forming thoughts
• Handwriting almost non-existent
• Dry skin – arms & legs
• Red sore flakey skin on face
• Seems to easily cut skin even by scratching
• Withdrawn
• Hygiene deteriorated – doesn’t always shower needs to be reminded
• Appetite has decreased
I’m sure I am missing a few.

My thoughts to date;
When I was first told back in 2005 by Victor Bruce PA of Schenectady Neurology that he believed Bernie had PSP I was devastated, he actually told me how sorry he was to bring such bad news to me. I started researching everything I could on this condition and was heartbroken to think that my husband could have this terrible disease.
Bernie had always taken care of his health and avid runner for 30 + years completing 13 marathons and hundreds of other foot races, constantly working out and buying numerous exercised equipment/machines for home use. I remember being upset when he spent the money on all this equipment, now I am thankful. I think his overall excellent health going into this has helped him to do as well as he is doing to date (and of course his young age at onset 54).
After the initial shock of hearing this and moving on to doctors at Albany Medical Center’s Movement Disorders Clinic, Bernie set out to fight back. He continued to run until he could no longer move his feet and run safely, he then took up swimming until he could no longer do that safely do to the fact that he could not move his legs and was swallowing water. After that he worked out in our basement on the Bow-flex tread climber & bow-flex workout machine, several times a week he has recently stopped that also due to his broken ribs. He would sometimes lose his balance doing so but was determined to stay strong so pushed on. He also has been able to continue golfing these last few years, going out a couple of times a week with friends between the months of April and October weather permitting. And over the last couple of years has had to change from golf shoes to sneakers so he could move his feet, and allow his friends to pick him up when he would fall, but the importance of just being active and being out there kept him going. He has actively played sports almost his entire life. Because of his broken ribs he has not been able to get out to the golf course yet this year and I am hoping that he will heal in time to do so, but I am also worried what effect this set back will have on him.
We have made some changes to our home such as putting in railings and getting a higher toilet. We are now looking into redoing our bathroom and replacing the tub with a walk in shower, Bernie is fighting me on it worried about resale but I told him we will not be selling anytime soon. He will be 60 this September and I just turned 52, we have 2 girls still in college and one son still at home at the age of 25. We are thankful he is home with us because he really helps out with all the things Bennie would normally do, but we are not sure how long he will stay as he is looking for a new job and might have to leave home in the near future. Our older daughter has one more year of college, she is at Upstate Medical College in Syracuse NY due to graduate May 2012 and then will be married August 2012 (Bernie is concerned about walking her down the aisle but we’ll handle that when we get there). Our youngest will be attending SUNY Oneonta this fall so we are a busy family in many stages of transition.
We have tried just about every drug out there and every diet, herb, vitamin that states it can help in any way but have found nothing that has really shown to help. We treat things as they come up and take life a day at a time trying not to look ahead at what might be. Sometimes I wish that the doctors could tell me exactly what is ahead but one never really knows how anything thing will effect anybody so we just push forward.

I go to the psp.org website and read what people have to say and get information from there; it helps to know that there are people out there willing to share their experience. I am taking these notes in hopes to help me to better understand what is happening at this time, as some days and weeks blur together and also to maybe put out there for others to read. I know that I am always looking to read about someone else’s experience in hopes that it will enlighten me in some way. Bernie will be donating his brain for research in hopes to aid in a cure someday, we have children and although they say most likely not genetic I don’t think they are sure.

More thoughts to come, I find that this is a help to me.






6/28/11

I’ve been noticing lately that Bernie’s eyes look a little unusual, red, and droopy like he is falling asleep and a bit watery too. He also has been having a hard time opening them, when I apply cream to his face in the morning (he seems to have weekly red patchy scaly and peeling issues) he closes his eyes and has a hard time reopening he sometimes has to use his fingers to get them to open. I notice this from time to time when he’s doing different things i.e. watching TV, just sitting talking to me, riding in the car, there doesn’t seem to be anyone particular time it bothers him so I just think it is an eye thing at this point. I’m also not sure it the skin thing is disease related, he has never had a problem before besides dry skin but know his skin seems for fragile he can scratch himself and break open his skin.
We picked up a walker as suggested by the doctor and took it to the mall and Bernie loved it, said it really help him feel stable. He uses a cane most of the time but he walks to fast for it and with his bad balance feels insecure, the walker was definitely a good purchase. Just in having the thought that it was a good purchase makes me think back 5 years when he was first diagnosed, I was truly frightened and to be honest figured he’d be wheelchair bound by this time, thanks to his fighting spirit and younger age with onset he is doing relatively well. But to think back just 6 to 7 years ago who would have ever thought we’d be where we are now……I didn’t think our 50’s would be like this at all. We were always an active couple doing things and going places and assumed that as the kids got older we would enjoy our later years (50’s. 60’s, 70’s and on) going south and enjoying our eventual retirement, but things aren’t not always as you plan so enjoy each and every day as it is a gift.


Take life a day at a time as that is all we really get.