Tuesday, September 22, 2015
Thursday, September 17, 2015
Sunday, September 13, 2015
Saturday, September 12, 2015
Thursday, September 10, 2015
Saturday, September 5, 2015
Thursday, September 3, 2015
Tuesday, September 1, 2015
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.
*****Visit iConquerMS.org for more coping techniques for living with MS*****
Sunday, August 30, 2015
Friday, August 28, 2015
Thursday, August 27, 2015
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.
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.
TO BE CONT...
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
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
Below is a post from my wife:
Well, something had to change.