Monday, February 22, 2016

FIRST APPEARANCES--CAVEAT EMPTOR

They first assisted living home I was that was not making enough money for the owner. He sold it and we all had to leave,

That first place I will discuss at a later date, for now I will focus on the next two places that will take up much of my next year.

Wow many residents of the first place didn't believe they would ever have to leave, I saw the writing on the wall months in advance and began looking for new place shortly thereafter.

I had my eyes on a newer place in Ballard, A neighborhood we once on the condo and loved greatly. It was known at the time for the elderly community and we felt we were too young for it then but that one day we would return,

A good friend and my now spouse went over to check it out. They liked what they saw and reported back to me that it was a nice place. I went over about a month later.

I advise going to these places unannounced to get a good idea of their true quality. My first intention was to talk to the residence and that I did. Most seemed very happy with the place which was a good sign.

As I waited to meet the marketing person, I went into the gym that I had heard so much about. The woman who ran it was very nice and I felt an immediate connection. The place had the latest equipment and a beautiful pool. I was sold.

Luckily, she informed me that the marketing person was very new "so go easy with her,"

It is a good thing I had a heads up because the marketing director was awful at her job. I asked for unit facing east and she didn't even know which way the units faced. She also got lost showing me the units and the ones she showed me inside were a mess. She made me feel like I was the only one who would ask anyway what direction they units faced. That didn't set well with me. But I love the location,


The next step would be to meet with the assisted-living manager.

Sunday, February 21, 2016

ASSISTED LIVING HOMES DON'T KNOW HOW TO HELP ALL

Assisted living homes are not ready to handle people with disabilities or diseases. 
This is a huge problem and hole in our society.
Assisted-living homes are for those who have the money to afford thousands of dollars per month because they do not want to or cannot care for themselves, hey people who are ill or have disabilities have no family to care for them but they have the money so they cannot be put in a nursing home; and they still want to have a quality of life that allows them to do some living.

At the number one home I was in there were less than a dozen of such people.
Some had cancer, brain trauma, drug addiction, or MS/Parkinson's.

The caregivers on site didn't know how to take care of such people. Several just died. Very sad to watch.


This is why I had so much trouble and the next two assisted-living homes I lived in, they didn't know how to handle me.

Monday, February 15, 2016

MAKING AN ACCESSIBLE LIFE

I was 50 years old when I moved  into my first assisted living home, my spouse and I had been checking several out in the Seattle area years before---just in case they came I needed one we would be prepared.
That they came after I had spent five days and nights in the ICU at a local hospital for never identified virus, or something.
I was very weak, she was very weak, we could no longer take care of each other,

That is why people move into these homes they could no longer take care of themselves. It is a reason many will not except.

Sometimes their children or family members can no longer, or no longer wish to take care of them. That also is easy to be in did Nile love because it hurts, I saw a lot of that displayed in anger at number one.


That is why I can't repeat enough it is so important to prepare for where you will take your loved one in advance.  Involve them as much as you can. But don't kid yourself either, you can no longer take care of them by yourself.


Friday, February 12, 2016

START PREPARING JUST IN CASE--MULTIPLE SCLEROSIS

I was 50 years old when I moved  into my first assisted living home, my spouse and I had been checking several out in the Seattle area years before---just in case they came I needed one we would be prepared.
That they came after I had spent five days and nights in the ICU at a local hospital for never identified virus, or something.
I was very weak, she was very weak, we could no longer take care of each other,

That is why people move into these homes they could no longer take care of themselves. It is a reason many will not except.

Sometimes their children or family members can no longer, or no longer wish to take care of them. That also is easy to be in did Nile love because it hurts, I saw a lot of that displayed in anger at number one.


That is why I can't repeat enough it is so important to prepare for where you will take your loved one in advance.  Involve them as much as you can. But don't kid yourself either, you can no longer take care of them by yourself.

Wednesday, February 10, 2016

TO BLOG WITH MS

My hands have become week, my fingers are not functioning as they should. Keeping up this blog will be very difficult. I use my Apple iPhone for voice recognition technology and speak the posts into my phone. Then I copy and paste into my blog but right now it is difficult even to do that and I require the assistance of my spouse.


Speaking and writing are two entirely different functions. Although I pride myself on my public speaking my voice is become very hard to understand. Writing, as it were, is just not the same. This will definitely be a learning curve for me. I thank you ahead of time for your patience and understanding.My hands have become week, my fingers are not functioning as they should. Keeping up this blog will be very difficult. I use my Apple iPhone for voice recognition technology and speak the posts into my phone. Then I copy and paste into my blog but right now it is difficult even to do that and I require the assistance of my spouse.

Speaking and writing are two entirely different functions. Although I pride myself on my public speaking my voice is become very hard to understand. Writing, as it were, is just not the same. This will definitely be a learning curve for me. I thank you ahead of time for your patience and understanding.

Monday, February 8, 2016

FIXING NEW CONDO 2015

I am so angry about what the last two very expensive assisted living homes have done to me. Somehow I must channel this anger and do something positive.

My first step in doing that is to move out of them into a condo of my own. My wife and I shall overcome the damage they have done to us--somehow.




Sunday, February 7, 2016

NEW HOME LIVING WITH MS

I am so angry about what the last two very expensive assisted living homes have done to me. Somehow I must channel this anger and do something positive.

My first step in doing that is to move out of them into a condo of my own. My wife and I shall overcome the damage they have done to us--somehow.I am so angry about what the last two very expensive assisted living homes have done to me. Somehow I must channel this anger and do something positive.

My first step in doing that is to move out of them into a condo of my own. My wife and I shall overcome the damage they have done to us--somehow.


Saturday, February 6, 2016

Making a Condo ADA Compliant

Although my condo unit was described as an ADA unit, nothing could be farther from the truth.

  Job one was getting access to my own balcony   And that required having a ramp built  which required finding a handyman.
Sounds simple enough, right?

And was in fact very difficult to find a handyman for hire. 

But I did find one and he was very good at completing the task. But now he won't return my calls.

Tuesday, September 22, 2015

GET MORE AIR TO HELP SPEAK AND SWALLOW BETTER: KAH


My spouse, a graduate of NYU drama school, has shared with me some amazing advice for how to improve your breath and speaking. I think all of us with MS eventually Will have to deal with slurred speech or problems in swallowing. This could be very serious, here's her advice that I have followed and it has helped me greatly:



To open up your chest muscles and strengthen your chest muscles, it is all about controlling exhalation.



After a deep breath exhale by making noise using your lips or tongue. For example a raspberry sound (stick your tongue out vibrate your lips around your tongue in case you don't know what a raspberry is.)

This develops your chest muscles by controlling exhalation.



Find your soft palate, located at the roof of your mouth, with the tip of your tongue. As you breathe in, press that spot and then release to make a sound like "KAH."



This will help your soft palate lift and open the back of your mouth. 



The plan is to help your mouth release breath more fully as you speak and attempt to swallow.



These are exercises that singers go through every day. Begin each morning by taking a full breath in through your nose and then exhaling through your mouth.



These tips have helped me greatly during my MS times of slurred speech and difficulty swallowing.



KAH KAH KAH 

Thursday, September 17, 2015

CONDO LIVING WITH MS


So much has changed since I was diagnosed with MS in 1990. For one thing, there were only about 12 MS blogs; now there are thousands. I really don't know how to make mine unique except to tell my own story of living with MS.

Right now I am trying to live independently. I will document that as best I can. When I was first diagnosed, I never thought I would be in this position. Yes, I knew MS was progressive and that the years ahead would be challenging. I simply had no idea how alone I would be in this adventure.

I often wonder what other people do with MS, how they live.



While I have tried living in assisted living homes with my disabled spouse, I finally decided a condo is the best way to go. Owning a small condo in 1992 has helped me greatly to understand the ins and outs of this process. Owning a condo is not for everyone.



There is a homeowners association to deal with, and that can be an adventure in itself!

Every owner has a voice, a vote, and they differ in opinions on how things should be run in their community, moving into a new neighborhood is like being the new kid in school.



My real estate agent told me this was an ADA unit--NOT SO! At least the agent even admitted he didn't know what that meant to be accessible. Wheelchair user friendly means you can get in the front door of your condo.



Like I said, much has changed since 1990 when the ADA was passed into law. My first condo was actually ADA compliant and always. The bathroom was oversized, The sinks in the kitchen and bathroom were lowered and cut out for wheelchair access.

patio had to level access,and they building had a wheelchair ramp at the back door.


Yes, this will be a new adventure!

Sunday, September 13, 2015

WHY EATING PROBIOTICS MAKES BRAIN SENSE


Food may be affecting your brain more than you know. Alzheimer's is on the rise, and a new research shows that if your parents had Alzheimer's you probably will too. In my last post I asked what can I do that knowledge.



We can change our entire body in seven years. Every seven years the biggest organ by the way, our skin, turns over, changes like a snake sheds it's skin.



Probiotic rich foods help maintain the gut lining, act as natural anabiotic's, regulate inflammation and help us released nutrients into our blood from the food that we eat. What is not to like about them?



You can buy a bottle of pills that are probiotics at many drug store or online at Amazon. 



It is so easy to help your got to help your brain. Live culture yogurt can easily be added to almost any meal, and yogurt makes a great snack. Just avoid the overly flavored yogurts--we don't need the extra calories.



Personally, I tried to include broccoli in every day. I am not an expert in all the wonderful things that Broccoli does for a body but I know that I always feel better after I eat it.

Whenever I have had a cold, I ate a whole package of frozen broccoli and within 24 hours the cold was gone.



You are what you eat set a wise old man. If that's true then I think I'm a garbage can.--by Ogden Nash

Saturday, September 12, 2015

REFEREE ATTACKED BY FOOTBALL PLAYER


That vicious attack of a high school football referee is disturbing on so many levels.

Whether or not that student was directed by his coach to attack that referee is beside the point.



The point is we are not raising our children to think for themselves. Teachers and schools can try to do this, but it is the parents that have the responsibility to parent their children to think for themselves.



That is very difficult for many people because they want their children to think just as they think.



What poor parenting that is! 

Thursday, September 10, 2015

SHY MOTHER, ALZHEIMER'S I AM NEXT


My mother was extremely shy. I will even go as far as the say she suffered from shyness.

She had not one friend in the entire time I lived with her until the age of 21. She never went out at night to visit anyone, not even her own brother and sister. She rarely spoke to strangers and went out of her way to avoid unfamiliar situations.



Currently she lives in a nursing home in Indiana, and has been there now about eight years. When I call her on the phone is very hard for her to speak now, and she has made no friends.



They say that Alzheimer's changes your personality. That's certainly was true of my mother right before she went into the nursing home. I would call her from Seattle, and she would tell me stories of having visited with her neighbors.



She also began getting out more and going for walks in the neighborhood. I was very proud of her, but it all did seem very strange.

Although she tried for a very long time to hide any of her Alzheimer's symptoms, I see this now as her personality starting to change.



We think that Alzheimer's will change the personality in a bad way, a negative way, in my mother's case this was just the opposite.

I read a recent study that says if you are a baby boomer taking care of your parent with Alzheimer's  then you too will be getting Alzheimer's soon.



What are we supposed to do with that knowledge? 

Saturday, September 5, 2015

FORGETTING HOW TO SWALLLOW// DYSPHAGIA


While speaking to a friend yesterday. Who is currently in rehab for an infection, she mentioned that she would be seeing a speech pathologist because she felt like she forgot how to swallow. (along with having difficulty speaking clearly)



She asked me if I didn't think that was crazy to forget how to swallow. This is certainly not crazy, because it is a typical symptom of MS.

I have forgotten how to walk. Those of us with MS, can't forget anything, because everything lives and our brain. And as we know only too well the nerves in our brain don't send messages real fast if at all.



The brain stem is probably the clogged area so to speak, no pun intended. I saw a commercial on TV that has really helped me remember how to walk. It shows a baby walking for maybe the second time. It clearly shows when his knees bend, his hips carry him, etc.

Wow I hope this is a short-lived relapse for my friend, as this forgetting how to swallow often is, here is how it is helped me to remember how to walk: We must learn again the voluntary way our body works to make us function.



This is the best link I found to help explain how we swallow. But you can Google to search the site that works best for you. Sometimes we simply have to help our body to work. It can be done.



Forgetting how to swallow is much different than having difficulty swallowing, which could be caused by many different things, so do contact your doctor if you feel under great distress. I have had MS for so long that I now know very well this feeling of "forgetting."
Dysphagia= "trouble swallowing due to a disease."

Thursday, September 3, 2015

Puzzles, Stand-Up Comics, Try It!


Is always important to try new things.



My mother began putting puzzles together around the age of 70. I was very proud of her for trying something new. She would send me a photograph the completed puzzle every week. I must've gotten at least 200.



Being a standup comic was something I always wanted to try. I love to make people laugh.



Our local extension University offered classes in being a comic so I signed up for one. At the time I have MS and used a cane. I figured a good wring some jokes out of that.



Dole was vice president then, and a war injury left him always grabbing a pen in one hand to avoid drawing attention to that impairment. One of my jokes had something to do with me holding a cane for a similar reason. Most of my jokes has something to do with the cane.



They practice audience did not find me very funny, and an attack of my MS stopped me from going to the comedy club with that class.



Thus ended my dream of being a comedian. One day however, I may try again. Since I now I now am in a wheelchair, I should have more material.


Important thing is to never give up on trying new things.

Tuesday, September 1, 2015

HOW I HAVE CONQUERED MS


The idea that we can conquer multiple sclerosis is really a misnomer. Since it was discovered as a disease in the 1800s there have been no significant advances toward curing this condition.

You may disagree with this as you take the latest medicine, as you walk your dog and whistle "Smile and the world smiles with you."


But for those of us who have been diagnosed with MS for decades and struggle to get in and out of our wheelchairs, we know that the cure for this disease is many more decades away.

If you have never needed a wheelchair, consider yourself one of the lucky few of the 50% who never will need one.


After living with MS for 25 years since my diagnosis, I know now that I will die with MS.

We will soon know more about Pluto than we know about MS.

What I can conquer is me and how I live with MS. To conquer is to control, and in life we must remember that we can only control how we react to things I choose to focus on the good things in my life. I prefer to focus on all that I can do, not all that I cannot.

As a neurologist once told me, I will always be able to love and be loved. That is something I can control and enjoy doing. 


I also enjoy pushing others to look for a cure for MS. It surprised me greatly how few people in the medical profession are familiar with MS. If a doctor or nurse does not specialize in this condition they don't really know what it is. I like telling them.


While I cannot conquer MS, I can certainly conquer how I live my life in spite of it. Eating healthy, exercising, laughing with friends and grabbing Zen when I can. That is how I conquer my life and the unique obstacles MS presents.

*****Visit iConquerMS.org for more coping techniques for living with MS*****

Sunday, August 30, 2015

STRESS=INFAMMATION=MS RELAPSE


Why stress so harmful to the body? We all feel it we all know when it's happening – – but what is it doing our body?



Yesterday I had one of the biggest relapses I have had in years. All the moves I have had to make, the eviction , and everything that goes with all of that, finally caught up with my MS



I have always prided myself I'm being a pretty cool dude. The last 12 months have proven even too much stress for me! I wouldn't have known it except that my body told me so.



During a 20° drop in the temperature and torrential down pour, my MS body just shut down. If you have MS, then you know what I mean. Shut down!



I am going to try to wait this one out, and see if things settle down. I have been dealing with tremors and weakness on my right side in the last 12 months, so we shall see.



Obviously, stress enflames the body.
Yoga, deep breathing, what do you do to relieve the stress from your body?

Friday, August 28, 2015

MS RESEARCH: TAKE WITH A GRAIN OF SALT


A recent article in the New York Times has proven out something I always suspected:

"Dr. John Ioannidis, a director of Stanford University’s Meta-Research Innovation Center, who once estimated that about half of published results across medicine were inflated or wrong, noted the proportion in psychology was even larger than he had thought. He said the problem could be even worse in other fields, including cell biology, economics, neuroscience, clinical medicine, and animal research."

In other words: take the latest and greatest research on MS with a grain of salt.

After being diagnosed in 1990, I can tell you that much of it is a bunch of hooey.

you may not like to hear this, but that latest drug you think is the best is nothing more and snake oil.



Here are some questions you can ask about the latest research:

One. How many participants took part in the testing? How big was the study?

Two. Has the outcome been duplicated? By whom?

Three. Who sponsored this research?



Many of the new ideas for MS I have read about decades before. I'm just saying.



Read and add a grain of salt.

Thursday, August 27, 2015

HOW HAVE WE FAILED MS AWARENESS?


In 2008 I found myself at a local ICU unit during the worst snowstorm Seattle has ever seen. There was a big window behind me and while I could never see any of the snow I was given firsthand reports by everyone that came into my room. Sometimes I think they kept me there for five days because they couldn't think of any way to get me out in the snow. My family doctor had thought it was a good idea that I go to the hospital because I had some unexplained vomiting and a rapid heartbeat. After five days of examining every inch of me, they sent me home finding nothing wrong with me.



What I found the most curious about that experience was that not one nurse or doctor knew what multiple sclerosis was. I'll give you a minute to think about that.



My own neurologist was unable to make it to the hospital because of the snow. An Infectious Disease Dr. was paying close attention to me, thank goodness. 

An infection can cause serious MS complications.



When I went out of the ICU I moved a few weeks later into an assisted living home and that is where I have been since 2008. Now, hold onto your hat.



Not one RN or nursing assistant I have come across at these assisted-living homes has known what MS is.



Oh, they know someone whose sister has MS or whose good friend of a friend whose a brothers sisters father had MS.

but ask them what the MS is and they don't know.

Many will tell you they have been in MS walkathons! So, MS awareness is sorely lacking in the medical community.



Please I ask you, bring it up whenever you can. A chronic progressive disease of the central nervous system without a cure: MS.



Talk it up!

Wednesday, August 26, 2015

THEORY ON MIND OF TV LIVE MURDERER

TV News reporters were shot and killed during a Live broadcast they were doing this morning. The shooter, recorded it all on camera and put it immediately on Twitter.


When this type of unimaginable behavior happens in our society we all stop for a moment and ponder why? What is happening to our society? There will be much discussion about this in the days to come, then we will forget and go on about our daily lives. Chalk another one up to human behavior being unique and sometimes insane.

I want to put forth a theory: our technology is moving faster than our brains can keep up a it, faster than we can process it. I blame the fast forward on our TV remotes. You heard it here first.

At some point in the past years I started using the fast-forward on my TV remote to speed through shows and get to the end.
Then something very unusual happened.
I began a dream in fast forward speed.

The dream is so fast my brain could not keep up with it. It is hard to describe what the dream who looked like. Many small fast images that my brain projected for just a second. At first I couldn't make any sense of what was even happening. Then I was able to recognize some of the images. 

Upon waking, I just wanted to go back to sleep and see this again. It took a few days for me to realize what was happening, but seeing things this way in my brain was addictive. I began closing my eyes and trying to see things that way in my brain when I was awake.

While I was able to have only limited success with this endeavor, I am convinced it needs researching. If I filled my brain with horrific, violent images throughout the day I can only imagine what damage this would cause my actions.

They say the shooter today was unhappy at his job, that he had been fired. In the past this might have led to sitting on the porch and smoking a pipe, and rubbing ones forehead. Perhaps a trip to the nearest pub.

Today the world is moving so fast, I don't think we've caught up.

 
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