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.

Monday, August 24, 2015

LAWS FOR ASSISTED LIVING NEED TO CHANGE

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 WITH MSA

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.

TO BE CONT...















i

Tuesday, August 18, 2015

DEADLY COMPLICATIONS OF MS

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

ASSISTED LIVING OR NURSING HOME--BIG BUSINESS

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

THE DIFFERENCE BETWEEN NURSING AND ASSISTED LIVING HOMES

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

WATERMELON COOLS MS RELAPSES

WATERMELON!

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

FIRST LEGAL ANNIVERSARY WE ARE SEPARATED

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.

Sunday, August 9, 2015

MRSA At the Assisted Living Home OR Social Workers are Worthless

The doctor in charge released my spouse from hospital. Her culture came back positive for MRSAhttp://www.webmd.com/skin-problems-and-treatments/understanding-mrsa?page=2, I am still figuring out this computer, but there is a link that tells you more about the staph infection.

MRSA is a common infection that has gained national hysteria attention because it has become antibiotic resistant, can spread quickly to vital organs---it can kill you if allowed free access to your body. In fact my spouse's doctor told her that had she waited another day...

We did  not wait. She sought medical treatment immediately, thus turning this into a treatable infection. And MRSA is a very serious infection since it is, in many circumstances, resistant to antibiotics, but we are health-educated people. We HAD this. Maybe that made the 'medical'  staff here so unnerved.

After her IV dose of antibiotics was done, her Infectious Disease Dr. pronounced her okay to go home. Our AL Home refused to allow  her TO RETURN! Enter a SOCIAL WORKER.

Now some people with MS think social workers are angels---from what I have seen they are institution-paid used car salesmen with limited knowledge of ANYTHING outside their pre-programed referral duties. They also mainly work for government agencies, prey (yes, I said it) on the poor, weak, elderly and disabled. I will expound on this later.

The social worker (now, keep in mind I am sitting at 'home' getting text updates from my weary spouse, who I TOLD her "Don't worry. You'll never see that social worker again-and she didn't)
gave my spouse a list of 35 facilities that might take her "for rehab" adding,  "will you sign here to accept a FEEDING TUBE?"

WHAT?! I was furious.  I must have made 50 phone calls that day. It was a Friday. Her main Dr. had left for a 3-day weekend. NO ONE from our AL home came to see me. Even though I have a power-of-attorney over my spouse, not to mention MY SPOUSE, no one from the major Seattle hospital ever contacted me!

AL housekeepers DID begin cleaning our studio with bleach, while wearing a paper gown and face masks. Yet, not one person ASKED how "I" was feeling...

Friday, August 7, 2015

LANCING A PIMPLE? INFECTIONS IN ASSISTED LIVING HOMES

My spouse noticed a pimple  on her leg. By next day it was very hot and growing. She went to see her doctor that very day. They decided to start her on antibiotics and if it didn't get better a trip to hospital, more powerful antibiotics.

The next day it was worse--hotter, bigger, and hurting to walk.

Our mistake #1: telling the 19 year old CNA-wannabe-nurse-wannabe about the bump.
ANY conversation went straight back to the nurses. (The Head Nurse thinks vaccines are a bad idea; a conversation he denied in front of his boss "That doesn't sound like something I'd say.")

From this point on we lost control of our medical choices. Thank goodness we have REAL doctors who understand how these assisted living homes operate. From the eviction from the previous one to our forced move to this one, our doctors have been aghast and concerned for us. Obviously when it comes to these assisted living joints, their reputation proceeds them.

Anyway, spouse had large growth (plumb size, but deep by now) lanced. Area was shot up with lidocaine, blood, pus, and a space alien's first born came pouring out. To be on safe side, heavy duty antibiotics would be given by IV. Packing of the lanced area would need to continue for a few days.
A culture  would be done to insure that the best antibiotic was administered.

This was all done exactly as my spouse's doctored ordered it. Enter the 'WE MUST BE IN CHARGE OF THIS|" assisted living (AL) staff.

I began closing the deal on our condo.

Thursday, August 6, 2015

HOA Approval Needed For ADA Accomodation

Sure Hands lift system: looks fantastic on YouTube videos and just what I have needed: a grab around back, then a push up. I met with the state sales rep.

At first she seemed very hesitant. Her reason was that many can't use this system due to lack of core strength. While my core has suffered over my assisted living home moves, I am still strong enough.

Next would come installation in the ceiling (I am on top floor) and approval by the HOA ( Home Owners Association) board. It was July 1. I wanted out fast. The final straw at the fancy assisted living home was when they refused to allow MY SPOUSE back after a hospital released her.

We had to get a place of our own, no more fascist BS or nonsense evictions.

Without the lift system I would have to hire an agency.

I used to be the president of a HOA and was familiar with the process. They needed to know me. I was requiring an ADA accommodation. I meant business.

Time was not on my side. My spouse was still trapped in a hospital.

Stress.

Wednesday, August 5, 2015

ADA COMPLIANT CONDO, A PERSON WITH MS IS CALLING

One week ago we began moving from an assisted living home to a condo.

My spouse and a dear friend met with the real estate agent who showed them some condos. I used the on line real estate site, Redfin, to narrow down the options. I loved living in the Seattle neighborhood called Ballard. There was a unit available in the complex across the street from assisted living home that evicted  us Aug 7, 2014--we used to stare off to a fist we used to stare at that complex every day, and say, 'wouldn't it be nice to live in a place like that?'

The unit available seemed nice enough for us, but whenever I spoke to the selling agent, he seemed and what was he not telling me?  It came out that the carpet had a strong odor and cat.  The refrigerator door also had a dent. Hmmm

The next day the real estate agent called this a surprise, there had just come open an ADA unit.
He seemed very happy, but I doubted his knowledge of what that even meant.

I sent out my team at property assessor's, and they all assured me that this was in fact a nice unit.
They all told me that bathroom was bigger, his sinks were lower, and wasn't I lucky to have found this type of unit!

I bought it sight unseen. A sales representative sold me on a ceiling lift system and I was so happy to get out of the oppressive assisted living situation my spouse and I had found ourselves in.

Today we received a basket of plants from an assisted living home.  It is their way of saying, "We are still in control of you."

In my next post I will tell you what his condo turned out to be in reality.

Of course now I must be mindful that the old assisted living home will be reading these posts, hoping we fail and any chance of libel, they will attack.

Thursday, July 23, 2015

Let the packing begin! MOVING TO CONDO! How to live with MS

Let's recap:
I was DX with MS in 1990. I work for the City of Seattle for 48 years with MS.
Starting as.most do, I was relapsing/remitting for abut 10 years. Now I am secondary progressive.
I am 58 years old, was married in 2014 after a 35 year courtship, I guess she can say, well when the law caught up with the times we had our same sex marriage at an assisted living home that evicted us.

When I first met my wife, she was the unwell one.  We tend to go back and forth.  We struggled to help each other and do the best we can.

Unable to continue helping each other, we moved  into an assisted living home in 2008.  Thus began our adventures in hell on earth.  We got a real education in a new aspect of life in America. 

Now you're up to date.  I began this blog in 2007.  So much has happened in the last 12 months, I will post as often as I can to share these adventures with you.

Assisted-living homes, lawyers, lawsuits, liars, attacks against my body, and many adaptive devices for people with disabilities, and figuring out a way to live on our own again.

In two days we will be moving out of the assisted living home where we currently reside and into a condo of our own.  I will attempt to document this move, route battling with my new computer.

Tomorrow we will have our friend over to box up everything.  We had to leave behind so much when we moved from the place that evicted us, or should I say illegally evicted us.

The stress of all this has been great and has affected our diseases in a very bad way.  One has a choice either to quit or start again.

Quitting is so boring.

Tuesday, July 21, 2015

Rebuilding a MS Body

My biggest obstacles right now is walking, moving from power chair to loo and back.

Since I live in a high class assisted living home, they are very concerned that I not fall. Because of that mentality, I mean any fall will look bad in their state reports, so I am unable to. attempt my own transfers. If I were to fall, they would make a huge deal out of it, including sending me to rehab or evicting me.

Therefore I have been stymied in any attempt to use my arms or lower body in this fashion. This is a huge detriment to my MS.

They SHOULD be encouraging my movement. That will never happen. There is less money for them if I can transfer myself.

It is obvious I must leave or, and I don't mean to be overly dramatic, die. People with MS must move.

When I realized that most of the caregivers here (they call them "Care Managers" uh-hem) do not know what MS is, and have no experience with a standing pivot transfer is, I had to figure out a way for my body to bear weight.

That was resolved with my $6,000 purchase of a Rifton Tram a lift device made by Mennonites in Pennsylvania. A wonderful product ( no, insurance doesn't pay for it) and it gave me a chance to not only bear weight but measure my improvement!!

It involved my spouse moving it up to me. Then she hurt her leg--a nightmare I will post about sooon
Her leg has healed and we. are into our own condo soon. My body is starting at square one.

Here we go.

Saturday, July 18, 2015

HOW TO LIVE INDEPENDENTLY WITH MS

Hi all! I am moving again.
My attempt is to document this move and show you that someone with secondary progressive MS can live independently.
Living in assisted living homes these past twelve months has been quite a journey; one that I would not wish on anyone.
I hope you will stay tuned.

Thursday, May 28, 2015

Person With MS Moving To Condo

This is one of the only photos of my grandma I have, Edith. she died at age 56. Pancreatic cancer. My mother was 15.

Edith was the oldest of  6.

I wonder what advice she would give me today.

My plan is to use all my savings and buy a condo. I will work with a company called Sure Hands to install a ceiling lift system, just in case.

This is scary. Spouse annd I will be alone. Scary, but our options are limited, our friends are few.

I miss my big family.

Such is life.

 
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