Thursday, March 6, 2014
Saturday, February 22, 2014
Thursday, February 13, 2014
|Excerpt from Dr. Wahls new book:|
"I used to run marathons and climb mountains in Nepal. I’ve competed multiple times in the American Birkebeiner 54-kilometer cross-country ski marathon (once while pregnant), earned a black belt in tae kwon do, and won a bronze medal in women’s full contact free sparring at the trials for the 1978 Pan American Games in Washington, DC. I used to feel invincible.
Then I developed multiple sclerosis. After decades of troubling symptoms I tried to ignore, I was finally diagnosed in 2000. By that time, the disease had a good footing in my central nervous system. My decline progressed rapidly. Within two years of my diagnosis, I could no longer play soccer with my kids in the backyard. By fall 2003, walking from room to room for my hospital rounds exhausted me, and by summer 2004, my back and stomach muscles had weakened so much that I needed a tilt/recline wheelchair. Within three years of initial diagnosis, my disease had transitioned from relapsing-remitting multiple sclerosis into secondary progressive multiple sclerosis. In that phase, disability slowly progresses despite increasingly aggressive therapy. By 2007, I spent most of my time lying in a zero-gravity chair. I was 52 years old.
Everyone with multiple sclerosis has a story—the years of clues and strange symptoms that finally, in retrospect, make sense. It is in the nature of most neurological and autoimmune diseases that symptoms accumulate slowly, bit by bit, over the course of decades. This is what happened to me. As a doctor, I was compelled to find answers: a diagnosis and a cure. As a patient, I was compelled to save my own life."
Diane: Being a doctor with MS must bring great challenges to find answers. What have you been most surprised to discover?
Dr. Wahls: That the nutritional program also allows people to lose weight without being hungry to get back to ideal body weight and that this diet works for most autoimmune problems and chronic health problems like obesity or mental health issues.
There are many healthy diets out there, what makes yours unique?
This diet was specifically designed to create the optimal environment that is nourish your brain cells. We have an iterative fashion tested the diet, validated the nutrient density (that is we were delivering the 31 key vitamins, minerals, and antioxidants that brain cells need to thrive) and tweaked the diet rules until we were very confident that people would exceed the Reccommended Daily Allowance for the key nutrients .
Do you see a cure for MS in our future?
Since our genes account for2-5% of the risk and diet, lifestyle, toxin exposure and other environmental factors account for the balance I do not see a cure based upon drugs or procedures. I do see many people with MS and other autoimmune, chronic medical problems and chronic mental health problems finaly getting control of the their disease, reducing relapses, stopping relapses and improving energy, memory, mood, and walking and hand function as they learn how to eat a diet that maximizes nutrition, minimizes risk of food sensitivities, improves the elimination of toxins and learn how to address the other lifestyle/ environmental factors like exercise, stress, purpose in life that will also help reduce symptoms and get their lives back.
A pleasure hearing from you. I wish you continued good health and many more discoveries!
Monday, February 10, 2014
My "New Life" in an assisted living home started 5 years ago. So much has happened in that time, and so little. Sounds like life, doesn't it. Well, for me anyway, always seems one step forward--two back, rinse, repeat.
Anyhoo, I learned a lot about assisted living homes and that ilk. My in-laws spent time in several, my mother is in one and I am in one. At some point in your life the chances are that you too will spend time in such a facility or a loved one will.
It is a daunting thought, but there you have it. I am looking to move to a new home and I suggest this start after doing your reading on line---visit the place unexpectedly.
I think my new 'aimed for' home hates me for it, but in an hour I learned much more than the "marketing" person showed me. I sat with a resident, I talked to receptionists and other 'lower' staff. Sit and watch.
When I first moved here, I was told they accepted no dementia or Alzheimer's residents. Just like the recent place I checked out, within a short time a resident appeared who had no idea where they were.
She looked about 80, so sweet, just sitting by the front doors. We smiled at each other. Then the receptionist walked over and squatted next to her. "Are you going out today, Ruby?"
"Yes. I'm waiting on my ride. (wait for it) I'm going home."
"Ruby, you ARE home."
"I am? Is this a nice place?"
"Yes, very nice."
"Oh, good, I hate to wait on cars."
The receptionist left. Ruby sat awhile, then stood and walked into the dining room where a server greeted her.
"Hello. I am going home. I just hate waiting on my ride." Ruby sat at a table.
"Would you like a ham sandwich, Ruby?"
" Is it good?"
"You had one yesterday."
"Did I like it?"
"Oh. good," looking around, "I have to go home today."
"Ruby, you ARE home."
"I AM? Good, I hate to wait for a car."
"I'll bring your lunch."
What I saw was wonderful. Staff knew her, cared for her, treated her with respect. She was happy. She was clean and dressed nicely.
I tune out the white noise of the marketing staff, and look at the details. Is the place clean? Talk to a server, a housekeeper, most importantly a few residents. (Not just one.) I spoke to 5 residents and 7 staffers before the marketing person got me.
And it was a good experience.
Sunday, February 9, 2014
That guitar became mine when I was about 12 years old. It was beginning to rot. Mom never played it.
Feb. 27 is her 86th birthday. She has Alzheimer's and lives in a nursing home near my brother in Indiana. Our relationship was mostly phone calls after I moved to Seattle, Washington in 1982.
That relationship worked best for both of us. You may not understand that, many do not, but she and I did. We remained very close.
It is shocking to me that she has lived so long. Her diet was awful, never exercised, and smoked from age 17 to her late 60s. (We often fought about her smoking. She tried so many fad ways out, finally ONE visit to a hypnotist and she never smoked again. ***Here is the sad part: She told me the hypnotist had her think of not being able to see her grandchildren grow up, nor hold her great-grandchildren. Thanks to a bitter divorce, she no longer got to see her grandchildren and never held her great-grandchildren. I hope one day they all realize what they lost.)
Now my partner's parents swam, did yoga, ate healthy---my mom will soon outlive their death age.
Mom has by far outlived her own parent's age. Genes? Yes, but whose? My own life expectancy with MS is 78 years. Anyway, I have been thinking about her a lot lately. She and I could never have dreamed we would both be in a nursing-type facility at the same time.
As I have previously posted, I am packing, down-sizing, to prepare for my move to a new assisted living home. My mom wrote weekly letters to me, and I to her, over 20 years worth, so I must get rid of quite a few. In one she asks me again if I would like her ring. "I planned to give it to Elizabeth, but I never see her anymore." (Her first granddaughter---we both wanted her birth so much...)
That got me to wondering what exactly happened to her ring. She was so proud when she bought it, feeling a bit odd buying her own ring, but egged on by our "JUST DO IT!" Aunt Vi. It had a black stone and small diamonds, silver...I just wasn't into jewelry. Going through her letters, I wished I'd taken it.
When Mom was moved swiftly (as these things often happen) from the hospital to her current facility, my brother was left to clear out her small apartment. He phoned and asked if she had anything I wanted. I said, "no."
Last night I came across Mom's ring in an old beat-up box.
It fits me perfectly. When I wear it, I see my mother's hand, I flash back to that teenager raring to move away from home; to that mother finally resolved to the fact her romance days were behind her, any ring put on her finger would be by her own doing. Sad, happy times, Mom's last child ready to leave her.
When did she send it to me? Why did she part with it?
Now it is mine. I feel as though Mom reached out to her daughter who fears her best days might be behind her. The ring speaks to me, "Not yet. Not yet."
Saturday, February 8, 2014
There was an article in TIME about being mindful. Apparently there are $$$ classes now to teach people how to shut off their cell phones and stick a raisin in their mouth and chew real slow...really EXPERIENCE the raisin. That's changing people's lives!
GIMME A BREAK
I am 56 years old and we had a NO COST lecture from parents & teachers in the 1960s: "Concentrate."
It is a sad place we live if we can't focus on one thing at a time. Multi-tasking is fine, probably good for our brain, but so is focusing on one thing at a time. This is NEWS?
The greatest generation has the "art form" down perfectly---they call it TAKING A NAP.
Try that, and if you can't do it, busy yourself with cleaning your home, gardening, or TAKING A WALK. And seriously break your cell phone addiction. You Don't need to carry it with you.
Every time someone who has MS dies, I cringe. Anyone's death is a sad event, but if they had MS, I can see the obit---no mention of any disease but MS.
Readers see that MS killed them. I believe that is rarely the case.
It is a sorry state of affairs when I almost wish MS WAS a killer. Killer-diseases get the big bucks for research. Why, everybody (almost) knows somebody with multiple sclerosis and that MSer is doing "pretty good," "good days and bad," "horrible on family," etc. Let me remind you of AIDS and the 1980s---it was death and fear and hatred. As heterosexuals learned they too could easily get the death sentence, all out war against AIDS, now it is a disease people live WITH. So, we don't hear too much about it anymore. Like MS, if you can "live" with it, no worries, no big bucks for research.
Maybe we need to define "LIVE" a little better. "LIFE" with MS and AIDS is not okay, it is far from life as I once knew it. Anyone who is HIV positive has a new "life" and it lacks a whole lot of "living."
So, I cringe, because people with MS need to know there are ways to live better and MS is NOT a death sentence. Of course what a person dies from is none of our business, but it can help many people to learn the truth. We are all one family in our DNA.
Monday, January 20, 2014
The day may come for us as we age or if we become disabled, like with multiple sclerosis, when we need to hit the bars. Well, grab a few bars anyway. You'll notice three in my bath. Four if you count that little one far left at back. I still think that is just to keep shampoo bottles from falling.
Yes, this was how it was when I moved in. The tub is cut so low it is actually a shower. I still need my bench to sit on.
One must get creative, but I say the more grab bars--the merrier.
Sunday, January 19, 2014
One of the most difficult and gut-wrenching chores of moving to an assisted living home is the leaving behind of. Yes, that process of saying good-bye to items you thought would be with you until the day you died. Items full of memories. Irreplaceable items. I have seen the blank look in the eyes of seniors who are my neighbors here at my current home, they tell of the loss. Their words confirm this.
Some seniors try to keep all that they can squeeze in. Their small units are so packed that it is an obstacle course just to enter, some items even overflow out their front doors into the hall. I have noticed these are the people whose minds are as scattered and cluttered with non-essentials as their apartment is. Very sad.
So sad, in fact, that I feared it, that deep sadness of the leaving behind of. Not sure when I first feared it, or at least decided I didn't want such sadness, but my partner and I have always chosen a minimalist lifestyle. I am more sentimental than she, with reason.
My reason for keeping certain items was that I believed one day I would hand them down to my family members. Young people in the family, like I was, anxious to learn about our history, share stories of lives gone by, but, no, there are no kids in my family who give a damn about such history. I am flummoxed by this---but there it is. They actually have no interest in me either! My Aunt Violet meant the world to me...so it is hard to understand the indifference of my many nieces and nephews. At any rate, the items are headed for sale, garbage, or charity donation.
As few items as I HAVE collected, it is still a process that leaves me feeling a bit sad. Photos will be removed from the many albums I have collected, put in a shoe box and when I die---into the garbage. I went to a "sale" at my previous apartment complex, the deceased tenant's daughter was selling all of her mother's items. There were many expensive looking pieces of art work about (I would read in her obit that she was the first woman to hold a leadership title at a big-deal New York city art museum. I just didn't have much money on me that day.) but what I wanted was the boxes of old photos she had.
Picking out a few, I asked the totally bored-looking daughter who the people in the photos were: friends? family? She replied with no emotion or involvement (I took to calling her a stone cold bitch.) "I have no idea." I just...I just... I can look at all of the photos Aunt Vi gave me, name 80% of the people in the photos and at least cam say with 99% accuracy if they are friends or family! But, one item was stunning, strange, but story-filled, a PURPLE mink stole! I think it was marked $25.00---IMAGINE! But the sale didn't go well, Goodwill collected most of the items,and stories forever dead.
And so it will be with my items, though I will attempt to write, my hands grow weaker. Once I asked Aunt Vi (I hear my reader's thought at this point.) to tape record her stories. My cousin bought her a recorder. Aunt Vi could never do it. I understand. It is just not the same.
So, as move day grows nearer, away goes the dream of a tea party, laughing over old school photos, playing music from our stereo to fill our space with joy. Farewell cute little stuffed bear that took the place of a pet I'll never have. Adios, to our painting done by the only true friend(s) we had here. And that fake tree in the corner? I had always wanted one...oh well.
The large teak desks---hahaha, I thought for sure our friend with two kids would want them, but NO, desks are relics! Homework is done on the lap, on the couch, in the bed. I will take a photo (that has no negative and will go to "a cloud."), a photo that must do. Make do.
"Make do." I heard my mother say that often.
The 'leaving of' has begun in earnest. Thank goodness I knew this day was coming.
Friday, January 17, 2014
Okay, I have begun the exhausting and strange process of searching for a new assisted living home.
Where I live now, with my partner, was a rush move of sorts. Although I had been living just fine, working, with MS for 15 years, I wanted to plan for the "just in case." I had visited almost all of the assisted living homes in my city of Seattle and the surrounding area where my in-laws (out laws? will they become true in-laws soon?) spent a few years in such facilities until their deaths. The place I now reside at was at the top of my list---it had a family feel to it and the price was right.
In one of the worst snow storms Seattle had ever seen, I found myself in a local hospital's ICU (intensive care unit) for FIVE days/nights, my heart stopped and restarted TWICE by the staff there, tests every day and they never found out what was wrong with me. (If you want to read more I posted about it earlier in this blog...my symptoms were fast heart beat, vomiting. I think I just got dehydrated.) After I was released home, I was so weak from my MS, partner also was becoming very ill, we were moved in here thanks to the then Mgr, and now it is FIVE years later. This place has changed tremendously in the last 6 months. It is time to go.
First I sent my partner to check out a joint on my radar with a couple of our friends. It got rave reviews. I went the other day.
The receptionist did not know what direction the building faced. The person sent to show apts. to me didn't know either, nor did she know what direction ANY of the apts. faced that she showed me! That ignorance would have sent me back out the door, except a staff member I ran into told me "heads up, she is new." That staff member and I accidentally bumped into each other. We talked for close to an hour before I met with the lost-in-space (she DID actually get lost in the building TWICE!) lady. FATE.
If you follow my blog, then you know I am a big believer in fate. I can FEEL it now. Something horrible had just happened and I said, "This has happened for a reason. I just can't see it yet." I see it now. This is where we will move to. It is fated and we are thrilled.
A new adventure awaits.
My advice about finding the right assisted living home? Visit as many as you can. Don't call ahead, surprise them. (Calling to get info is OK, but jump in when you want to visit.)
Make a list of your needs and wants. Figure out how much you can afford. Make a deal, don't settle for their first quote. At end of month the marketing staff want their commissions, so go closer to months end. Don't hesitate to ask for grab bars where there are none, a wood floor, new carpet---yes, much like buying a new car.
Most importantly: GET IT IN WRITING
Wednesday, January 15, 2014
Coming back from my Bell's palsy and last MS attack has been hard, I won't sugar coat it, but I have had to deal with much worse. Today I stood (always with walker) and each stand is thrilling. My caregivers here are a new bunch of very little help. I am looking for a new assisted living home, enough is enough. (FYI--there are no inexpensive ones in Seattle, I figure all my money runs out in 5 years---sweet dreams.)
So, after I made it up this morning my 40-something Kenyan caregiver is so happy! She didn't help me at all, I mean it is all she can do to peel an orange, oh wait, she didn't peel the orange that was sitting boldly on the table where it always sits to be peeled. She has been doing the 1-hour morning "wake up" duty for almost a month now, 3 days a week, still must be told what to do and still does 1/3 of it. (And I waited 6 months for this gem.) Still, she sees me try so hard each morning.
Right before she left, she comes close to me, bends near, "Are you a Christian?"
OY BOY, here it comes. I posted once about my Ethiopian caregiver who spent 4 hours every M-F talking God to me and me asking questions to the point of her great frustration. I don't argue, but out of need I have read the Bible to defend all the street preachers who see a disabled or gay person and just MUST set me straight, you know, keep me from Hell. (Christians are so considerate in that way and since according to them they alone know THE WAY out of Hell...)
I immediately responded, "Yes." She immediately told me Christ will help me walk and he was with us now. I immediately continued, "I am Jewish too and Muslim and Atheist, I...." She had heard all she needed, was nodding, smiling (which I never see on her morning visits), and I doubt she understood my words. I doubt she understands most of what I tell her each morning.
In my 56 years I have found the most miserable people are either Christians or used to be miserable until they "found Christ." I also have seen the most hypocrites, gun toters, beer drinkers, adulterers, mean people who say they are Christians. And when someone they love dies---they fall apart! They are always praying for SOMETHING and football players praying for a win---makes me sick.
Anyway, it is America and I must live with all this nonsense, but really I wish they would live and let live. I have accepted a lot more of THEM than they ME, so who is the REAL "Christian" here? Oh well.
It is simply EXPECTED that any sick person should be praying for help. Yeah, that always makes us all better, right? No worries, people tell me at least once a year that they will pray for me.
Thursday, January 9, 2014
Seems dieting is top of news again. Now 'they' are looking into those who are "able to keep off the weight." (JUST NOW? I hear 'they' even keep a list! Well! SHUT MY MOUTH, nobody ever asked me.)
My childhood was spent as a fat kid. I took my share of teasing, could never find clothes that fit, was last picked for school games and flunked most gym classes. Aunt Violet, the master baker, over-fed myself and my brother. I willing ate, and I don't mean to blame her, but when I drove away from Ft. Wayne and Aunt Vi, I threw out (yes, littered) a box of freshly baked chocolate chip cookies she had insisted I take into my new life far, far, away. (Michigan.)
So began my new life of being a normal weight person and I never looked (fell) back. Over my 56 years I have watched many friends and co-workers attempt to lose weight "and keep it off." I kept my mouth shut as their enthusiasm was always so great...in the beginning. Never would I tell someone how to get un-fat. But, boy, did I want to.
Here is MY advice and as usual, if what YOU do/did works for you---fare thee well.
1. Lose the word "diet." What you want is a life of healthy food choices. If you don't know what healthy food is--EDUCATE YOURSELF.
2. Eat less. When I met my partner 34 years ago, I couldn't get over how she ALWAYS left food on her plate. It was a foreign concept to me. Suddenly I realized I didn't HAVE to eat the whole cookie or every bite of pasta. (And the less pasta the better.) Smaller plates are an easy trick. In between meals, snacks should be pieces of fruit, vegetables, or cereal is my personal favorite.
3. Stop thinking about food so much. I immediately look away from TV and print ads for food. Years at my last job, day after day, I had to listen to my co-workers talk about their latest diet, what food they had eaten, where they were headed for lunch---it was constant. And, of course they were as over-weight after years than when they began their goals. I wanted to scream, SHUT UP ABOUT FOOD!
Bring your food to work, and only eat when you are hungry.
4. Drink more water. Our body will make you eat if you are not giving it enough water. This was also one of the major reasons I was a fat kid. My water came from food. I never used a public (including at school) toilet (get ready) my ENTIRE life until I lost the extra pounds. I know, I can barely believe it myself.
5. Move more. I'd say "exercise," but that is very overrated and can be horribly expensive. My aunt Vi never exercised a day in her 103 healthy years. She cleaned the house, her car, cooked, prepared food for others, did laundry/down stairs dozens of times per day. She also walked FAST, a fast mover.
6. Lastly, just accept that healthy eating and moving is what life should be, what your body was made for. Change your idea about life and shut out the noise---being fat is no fun.
(On a personal note: I jump started my new healthy living by running, then weight-lifting. I am disabled thanks to multiple sclerosis, but I still lift weights every morning. No matter how small (I once could only lift a PENCIL!), it all helps. Move what you can.)
GOOD LUCK and NEVER GIVE UP
Wednesday, January 8, 2014
My MS blogger friend has published her inspiration poems in a book available at the link above.
Saturday, January 4, 2014
Well, I now know what it is like to have Botox in your forehead to remove wrinkles. (Without needles and actual Botox!) My Facial Bell's palsy completely removed the lines from my forehead. I believe after over four months my Bell's palsy is 99.9% gone! YEA!
A quick look in the mirror confirms its departure---I look 56 again, not 21, from forehead maze of lines. I THOUGHT I was looking particularly awesome lately, but my eyes had been in need of new glasses, so I shrugged it off. After my partner took a photo of me that went straight to FaceBook and got comments such as "Your skin looks like a baby's!" I started thinking, my gosh, it really does!
Yep, Bell's palsy, the mild kind I luckily had, freezes your muscles, so it wouldn't allow for any movement or 'lines.'
Man, do I look old now. BUT, now I see how doctors can diagnose Facial Bell's palsy so quickly. DOH! I also understand the Botox addiction. Me? I am happy to look my age and embrace every line. (Plus I can hear and taste again!)
Thursday, January 2, 2014
When you are stuck in a wheel chair, it is very important to MOVE WHAT YOU CAN. MS makes moving your muscles all the more difficult when your body is frozen by a touch of Bell's palsy. My ability to stand was greatly reduced to NOT ABLE during the last four months. With little help from any medical experts (ick, such ridiculous words), I turned again to the gateway to salvation for MS sufferers--the INTERNET. I was determined to find some device to help me get moving again.
This device is also good for long plane flights or just sitting at work TOO LONG---gets the blood flowing and apparently the nerves too!
So many "devices" out there, just a matter of doing our own homework and finding them. When it comes to MS, we must be our own "expert."
Monday, December 30, 2013
With those clues and help from friends, I found our castle! There it is, all on Google images. Wow.
The old photos were not very clear, but our coat of arms, the black bear, is visible in all its glory. I will need to do more investigating, like--why DID my ancestors leave? But, it was great fun to have the book come to life.
The couple in photo from book are my great great great grandparents, Emanuel Biberstine and Albertine (Bovine) Biberstine. He settled in Ohio in 1834.
(Book made with love and hard work by Mrs. Nora Pace Biberstine.)
Friday, December 27, 2013
She called him every New Year's Eve to see if he wanted to meet for drinks. He always said "no." (As far as I know.) She loved him so much. He broke her heart.
Divorce is horrible. He left her for his mistress, younger, already had a child with HER after 10 years with my mom. I saw him ONCE all my life.
Divorce is horrible.
Thursday, December 26, 2013
A friend who is a pharmacist just sent me the current addition of a newsletter mailed to those of his profession. It was all about multiple sclerosis and the drugs to treat it.
Okay, fine, good that they took an interest in educating their...wait, what was that? Yep, in black and white it described what MS is and added that it will become secondary progressive if drug treatment is not started. Wow.
And, so, this is what students of medicine are probably taught. I'd bet on it, so pervasive is the misinformation about MS and the many treatments people with MS choose.
I was on a disease modifying drug, Copaxone, for 7 years until I moved to the secondary progressive stage. "Think how much sooner you would have been trapped in a wheel chair without the drug!"
Well played, because THAT is a question we will never know.
Monday, December 23, 2013
Still one of the greatest movies of all, "The Sound of Music" is making its way onto your TV in the form of a live play and the movie with Julie Andrews. Yes, I watched them both.
My mom and I went to the original movie when I was 8 years old. It was first ANYTHING we had been to with an intermission. But that is not the greatest memory I have of this perfect movie.
When I was 20 and deciding on my next path in life, having been asked by a man I was dating (who I found out was married with three kids "I really don't love her." UGH) to be his wife, and told by my ex-girlfriend how much better men were "Try it," (UGH) I went to a midnight showing of the movie.
In small-city Fort Wayne, Indiana, in an elegant tiered theater, I sat alone, mid-section. As I checked my watch, it was almost start time, but nobody else was there! Would they play the movie just for me?
They DID! Yes, I watched The Sound of Music all by myself, and I'm guessing a projectionist who really loved that movie! It was surreal.
The scene where Peggy Wood sings "Climb Every Mountain," just went straight to my soul. YES, I had a dream and I would go after her, wherever she was, however long it took. I left the theater knowing my path.
"A dream that will need
All the love you can give,
Every day of your life
For as long as you live."
Later that year I would find her and 34 years later, we are still together.
Saturday, December 21, 2013
One snowy winter my brother's wagon went missing. I was about 5, they would have been 13 and 12. We tracked the easily visible trail through the snow and found the wagon in front of a house. As we took home, revenge was discussed.
When Mom heard of our success and anger she said, "You shouldn't feel that way. Think how bad whoever took it feels to need a wagon so bad they had to steal. Shame on you."
Over my 50 years I have often remembered Mom's words. How lucky I was to have her for a mom.
Friday, December 20, 2013
When I asked the nurse "Why are you leaving me with so many?"
He made a flippant joke about how they have many uses, like squirting people. (?)
Okay, these last months have really shown me the lack of concern about health care cost/waste.
I'll share more in future posts. My 'good' finger is still trying to recover from the last MS attack on my right side. No complaints here, it has been YEARS since my MS acted up. I think getting Bell's
Palsy put my T-cells into 'munch on myelin' mode. (Myelin is your nerve covering that is destroyed in MS.)