Tuesday, September 22, 2015


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.


Thursday, September 17, 2015


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


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


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


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


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


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


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


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


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


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.

Monday, August 24, 2015


The social worker was not happy with the lack of care Susi got. Before I had a proper good-bye with her, she was moved to a hospice two blocks away. We texted as often as we could. She was not at all happy there. Her care was not better, in fact they hired some kids from our subpar original home.
Her two dogs were separated. She had so much to do. Time ran out.

Susi died within 6 months of diagnosis. You will never convince us that she couldn't have lived longer and happier with the proper care given.

All that I have witnessed first hand has convinced me that laws must change. If I am not allowed to take these land developers/facility owners to court myself, then I will attempt to change the playing field.

Susi is rooting me on.

Sunday, August 23, 2015


My friend, Susi, had MSA (Multiple System Atrophy.) It is a disease just as it sounds. Your bodily systems become inactive. The life expectancy after diagnosis is 7 years. There is no warning it is coming, and no cure.

Susi was a well known and much loved Seattle resident with a successful career as a real estate agent.
She also had roots in Germany. She owned a big, exquisite, house of her dreams there. as soon as she was diagnosed, she sold her dream house. Her son, daughter, and ex-husband suggested that she move back to the Seattle area where advanced medical research existed and she would be near family.

Susi moved into the assisted living home where I met her. We moved in during the same month. There was an instant connection and friendship, we sat together at every breakfast we could, even though it was at times a rubik cube puzzle to fit us both at the dining room table.

My spouse and I both visited her in her apt., where she had a lovely hardwood floor installed, as she waited with her two small dogs for her priceless furniture to arrive from Germany. She would enjoy it for a week.

Although the AL (assisted living) home we were at had said we could stay through hospice (neither of us planned to move again,) started Susi choking one night the caregiver who FINALLY showed up (one might wait 30 minutes for a carer after pushing the HELP button we all wore around our neck) entered her room, stood mindlessly and said, "Do you need help?"

This was the response I received many times. Oh how I bit my tongue to not
say, "Why no, I just wanted to party!" Really hard to understand why they hired so many young kids with little supervision and less common sense. Like your waitress asking you, "Did you come here to eat?"

Susi and I began planning our way out. We strategized buying a house with room for a live-in caregiver. She started contacting her friends in real estate. I researched cost of live-care. Susi went to doctor appt.,  she was now given 7 MONTHS to live. Her furniture, including bed, was stuck at dock due to a labor strike. I loaned her my lift-chair.

Some mornings she looked so good, had her tablet, but some mornings...
And the reason was always the same: the caregiver. I got it. We both knew the game we were in, unlike the majority of residents who were 80 + in years. For this reason management hated us, we could see it in their eyes.

Susi was ready to take legal action.



Tuesday, August 18, 2015


A  woman who read my blog wanted to visit. She came to the assisted living home I was then at.
Was I JEALOUS! She used a walker,but got around well. That was about 5 years ago. Today she is in a rehab facility.

Pressure sores began to compromise her ability to walk, drive, and eventually stand. There are Wound Clinics to help you care with pressure sores. She had been there many times. She chronicles her fights with Medicare to get better pressure cushions and a user-friendly power chair in her own blog: halt stop forget relax.

We have a lot in common, our age, our fun-filled time with MS and our long marriages to someone with their own health battles. She has an MS problem I don't though: the common, but deadly urinary attack. This led years ago to her need of a catheter. They come with their own difficult issues.
Her loving spouse tries to help, but our spouses are not nurses (and they certainly never signed up for MS 101) and sh** happens.

They have been to many ERs for urinary tract infections (UTI), a complication that can kill someone with MS.

The last week of July she went to an ER for this reason.

She got a staph infection, the hospital kept her two weeks on IV antibiotics. The pressure sore on her foot got so bad that surgery was done to remove most of one toe. By now her weakness was great and the hospital sent her straight to a rehab center.

She is having daily visits from OTs (occupational therapists) and PTs (physical therapists) and nurses. Her speech became very slurred and she "forgot" how to swallow, another MS complication that can lead to asphyxiation and death.

So...another couple of weeks and they may release her.

Those 'complications' are what GET JA.

Just another day with MS. We are thinking of you, Webster.

Monday, August 17, 2015


The main difference  between nursing homes and assisted living is the level of care.

Be certain that any assisted living home you sign with can give the care needed. They will ask many questions about this. They may, SHOULD, request a note from your doctor, along with a list of all the medications you take.

You probably have chosen your unit by now---and paid some money. No matter how caring they seem, it is a cash cow business. Look at the contracts you have signed: bottom line is you will pay--they will not. It is a business. Your charges will raise every year.

Now if you (or your parent) have lots of money; if you or they are lonely; if  meal preparation/housekeeping is too difficult---this is ideal. Need a babysitter for Mom? Your problem is solved! Just be honest: this is a business deal.

If you have MS, be prepared for a massive ignorance about it.

Keep records, make copies.

I was so gullible.

Thursday, August 13, 2015


Today it is important to differentiate 1. Nursing Homes  2, Assisted Living Homes

Both are places where health care is given. Both are very expensive.

That is pretty much where the similarities end.

You will not run into a nursing home resident at Starbuck's. One is usually admitted to a nursing home. You don"t walk out on your own. Most residents will leave only to attend their own funeral.
If you have middle to low funds, the government agency called Medicare pays the nursing home until your savings are gone and you are poor. Then Medicare turns you over to Medicaid and that government agency foots the bill.

Since we know how rich America is, the nursing homes charge moogo bucks, while paying the people who feed and clean you minimum wage. The food is cheap and bland. You will probably share a room with a stranger...maybe there will be a crappy TV in the room, but mostly you will sleep. If you do not mostly sleep, the staff will convince  you that you should and they will have drugs to help you.

In the 1970s the inhumane treatment at nursing homes got media attention. Society demanded action and the government drafted regulations. So, now there are decorations for holidays, better scents, and you may get rolled in halls, but mostly you sleep.

In the 1990s, women were working  outside the home more, rich land developers (mostly men even   now) saw moms, dads, would soon need care and there would be money to  be made---lots of interest bearing, rising property value money inheritance that many baby boomers would readily part with, since the greatest generation gave them a college education along with a transportation infrastructure which allowed them  to seek out the best jobs. Those kids would rather pay a stranger to take  care of Mom/Dad than jeopardize their job.

Enter the assisted living home! Made to please the kids. Beautiful grounds, individual units, trips to the zoo and concerts--why, it  provides all YOU (the kids) would give your parents!

But mostly...you sleep.

Medicare will not pay for these places. If you need watching or a reminder to take a pill. plan on paying $5-8,000 a month  for a studio unit.

And my nonrefundable  entrance at last place was $11,000.

Wednesday, August 12, 2015



To cool down your inflammation (you KNOW you have it!) eat lots of red foods--fruits and vegetables, even red peppers.

No, red velvet cupcakes don't count.

My longest remission was when I ate watermelon everyday.

Tuesday, August 11, 2015

MS and Humidity

They say that one degree in an increase in your temperature rise can cause a rise in MS symptoms.

In my first years after DX, this was true for me, then the HEAT EFFECT stopped. I could hang out in the sun--even today, 25 years later, the sun is my friend, delivering vitamin D the natural way.

It is the humidity that brings me to the MS party. I shut down. Can't speak normally, think normally, or move my hands/legs at all. Luckily, I live in Seattle, Washington. Humidity is mostly unknown here.

I still must insist on exhaust fans when spouse boils food, makes tea, or takes a bath. My shut-down is obvious and disturbing.

How to combat humidity? Humidifier. Air-conditioner. The MS Society, national or local, may help you pay for one.

Why does humidity effect me so? Well, it does make it harder for a body to sweat. The build up of unreleased heat apparently heats up my MS too.

Excuse me, time for cold iced tea.

Monday, August 10, 2015


Our 36th anniversary (and legally our first one) was spent with my beloved in a hospital.

Below is a post from my wife:

Home from the hospital, at last! It's frightening enough to be shuffled off there suddenly with infection from ??? but to then respond to treatment, be healing, and then be informed that your own assisted living HOME will not allow you back home. It was a nightmare, and my poor spouse at home bore the brunt of it. Specialists would make their rounds, pronounce me on the mend, then 'case manager' would come and inform me I can't go home, but they'll send me across town to a nursing home/rehab (drs would then say, 'what rehab?') Suddenly, after some collusion outside my door, reps from home appear and announce I can come home. So many caring and insightful messages from you all--I can't thank you enough, and For your support to Diane, you never let her go--I will never forget. -karenlee

Well, something had to change.