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Thursday, April 25, 2013

How dark is it on the other side?


On days with spilled coffee, traffic jams or bad cell phone reception - before you bitch about it, think again and be grateful for what you have.

Recently I have come across some personal destinies that are making me sad. 


I donated some money, but I want to do more. I am not a runner, so I won’t participate in a walk. But I write, and this is what I am doing right now, and I hope to raise awareness and maybe even encourage some readers to help.

Meet Mael, Paula and Marisa and learn about their every day life, their struggles, their pleasures.

Mael, a cute little boy
Mael is an adorable 5-year-old Swiss boy who is going to start kindergarten this summer, just like my son. To outsiders, Mael looks just like any other active boy who likes to play with his younger brothers, swim and pony ride. Last month his family took him to South Africa, so his greatest dream could come true: meeting his favorite animal, the zebra. For mom and dad it was a bittersweet experience. They took this trip now because they don’t know how long Mael would able to travel and enjoy this trip, and how long he would be with them at all.

Mael suffers from Niemann Pick Type C, a rare and ultimately fatal genetic disease, which will cause him to lose all of his abilities like walking, talking, eating, and at some point he will most likely die from it at age 10 – 15. More info on Mael's Website and Mael on Facebook

Mael's family
The boy doesn’t know what he has exactly, and he is very brave about doctor’s checks,  attending physical therapy and taking his meds 3 times a day.

Mael is currently on a painfully expensive drug that could help slowing down his symptoms. It is not on the list of healthcare approved medications, so his parents have to file a request with disability insurance every year. Their biggest hope is research as for example a new trial at the National Institut of Health (NIH) in Washinghton D.C. with the promising new drug Cyclodextrin. They are waiting to hear from this study and hope that Mael could take part. Mael would be among the first patients in Europe to benefit from this treatment. However for the time being It’s not clear if they really want to risk possible side effects, and if he will get the chance to be in this trial at all. 

The family tries to enjoy every day with their sunny boy and never give up hope that one day there will be a treatment that could help Mael and other kids with NPC. If you want to help, please support one of the fundraising projects that helps Mael and other children with rare diseases as for example Michel Wenger's upcoming Run for Mael or the charity event at Kindercity Volketswil, hosted by Wirtschaftsmagazin 

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Paula, sweet 17

Paula from New Zealand is one of my “Egg Buddies” on Facebook. 

She suffers from Multiple Sclerosis. MS is a chronic disease that attacks the central nervous system, i.e. the brain, spinal cord and optic nerves. In severe cases the patient becomes paralyzed and/or blind, while in milder cases there may be numbness in the limbs. It has a prevalence that ranges between 2 and 150 per 100,000.
How old were you when you were diagnosed? I was diagnosed in 2005 at the age of 48. People who get MS are usually diagnosed between the ages of 20 and 50, although I’ve known for years that there was something wrong. I had my first real symptom when I was in my 20’s, when I woke up one morning and I couldn’t see.  I went to the doctor who sent me to a specialist. I was put on Prednisone and although it only took a few days to come back to normal, it was frightening while it lasted.



What made you go see a doctor?
 I was having problems with my foot. I couldn’t lift it up properly and I kept tripping over. I was also having difficulty typing, my hands were stiff and when I did type, I kept on making mistakes. I felt like there must have been something wrong, but I didn’t know what. I went to the doctor and he said he was going to send a referral to a Neurologist, but he made a mistake. He sent me to a Nephrologist (Kidney Doctor) instead. I think it was probably a good mistake though, because after he examined me, he was so concerned that he sent me straight to the hospital. At the hospital I had an MRI and that is when they found I had MS.
Grandma Paula with baby Nicole
What are the worst symptoms? My worst symptoms are foot drop, heat intolerance, fatigue and tremors.  

How do the symptoms affect your everyday life?
 They affect my everyday life because I can’t do as much as I would like to be able to do. My family help as much as they can, but I don’t like letting them do things I should be able to do myself. Also when I try to make fine motor movements I shake badly.



What can you do on a good day?
 On a good day I can walk around a lot more, and do more housework, which for me is good. Most people complain about having to do housework, but not me. It makes me feel useful.
What happens on a bad day?
 On a bad day I can’t walk at all, and my son and daughter have to carry me. That is the most humiliating thing of all. 


Do you feel your current condition is stable? I do feel like I’m stable right now, but some days are better than others. If I try to do a lot one day, then I pay for it the next. Also I can’t sit for too long, or stand for too long, I just have to listen to my body, which is not easy for me either.
Is there a drug that is of considerable help?
 I was on a drug trial for Ampyra (Fampridine) a few months ago. It made me feel almost normal again. I was able to stand for longer and I could even walk without help. I can usually walk around the house on my own, but not outside. Fampridine made it so I could walk outside without help too.
Are you still on it?
 No I’m not.
Why not?
 Because it costs $800 NZD (New Zealand Dollars) a month to stay on it, and I can’t afford that. We are waiting for Government funding for it.
Are you on anything else now?
 I’m on 4 – Aminopyridine (4AP).
Does it help?
 I would say that it’s better than not taking anything. I definitely notice a difference if I forget to take a dose, but it’s not as good as the Fampridine was. 

How can we help?
 What we need is a way to raise the funds we need to be able to go on Fampridine again. There are a lot of people in the same boat as me, who would like to stay on Fampridine, but can’t afford it. Fund Fampridine in NZ

Buy this bracelet and donate in favor of  the MS  society
I never hear you complain! I admire that. I am sure it is not easy at all. The way that I look at it is, that there is no point in complaining, I just have to get on with things. I try not to stress out about it, because stress can cause me to have a relapse. I try to stay positive and make the most of each day, that's all I can do. I know that people who have a negative attitude seem to deteriorate a lot faster, and I don't want that.
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Marisa with her niece
Marisa from Minnesota, USA, is another Facebook friend. She was born with spina bifida and has been wheelchair-bound ever since. Spina bifida is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube.

Growing up, what were your biggest challenges?
Biggest challenges growing up was adapting to people staring at me and figuring out how to get into places that were not necessarily handicap-accessible.

What would you like to tell people who obviously don’t know how to behave around you (staring, making comments)?
I would either stare back at people who are staring at me or I would tell older children not to stare, that it's rude. I tell my nieces and nephew not to stare at people that have disabilities.

Today what chores do you need help with?
I don't really need much help with things around the house except getting the shower head flipped over to be able to use a wand for my hair and having a portable toilet in my bedroom because I can't get into the bathroom.

How easy is it for you to get around in public buildings or shopping areas and restaurants?
It's very easy now to get around in public, most are handicap-accessible now.

I read that spina bifida happens in 1 of 1,000 births, which is quite a lot. Do you know other people? Is there some kind of a community?
I do know another person with spina bifida. Known him since I was like 4. He is a year younger than me. Other than him, I don't think I've met anyone else with that specific condition, but I’ve had many other disabled friends.

How well do you feel taken care of by doctors, insurance companies, the health system in general?
I feel like the insurance industry totally takes advantage of people with disabilities. They assume a certain level of care is needed and they charge based on that and not the individual; drives me NUTS. My premiums do not need to be as high as they've been in the past because I don't need as much care as they would assume. I don't have ongoing medical problems/issues. Doctors also somewhat assume I can't do some things I can like when I get physicals. I surprise them by moving myself more than they think I could.

Did ObamaCare change anything for you? In what sense?
I don't think ObamaCare helped me as of right now. Maybe in the future it will be able to access more healthcare and not rely on the State (which I was on) or Medicare (which I am on now). I could hopefully get private insurance and it's not going to be as expensive as it probably is now.

If people wanted to do anything to help you in any way, what could they do?
As far as help, I think just asking me if I need help is a start. If I need it, I'll tell you, if I don't then leave me alone. I can do it.





Monday, April 22, 2013

Earth Day at the Gerber House

Before I start let me tell you: I don't feel like I am a very "green person". I drive a car, and I drive it almost every day. I enjoy our washer/dryer, dishwasher, steamer, you name it. I make fun of "esoteric tree hugging people" even if I can't deny that some energy may be flowing through those sturdy trunks.

My most environmentally conscious time was when Colin was a baby and would only sleep in the car or stroller, and only as long as the wheels were actually moving and I wasn't speaking. Driving around randomly in the car was out of question. Also I could not be one of those moms sitting on a bench, talking on my cell phone while rocking the stroller every now and then. I needed to walk for at least 30 minutes until he finally fell asleep. Cobble stones usually worked. Needless to say, I knew all the rough patches around our neighborhood. Then I wanted him to sleep for at least an hour. By that time I had usually circled the supermarket a dozen times. I had to walk in wide circles though, because when I met someone on the street and said hello - wide open were his eyes!

So this was a good time, health and gas emission wise. Also I only worked a half day per week, so I had time for all those walks / grocery runs. Oh, and all the baby food like veggie pulp and fruit sauce were home made of organic produce. This was actually something I was looking forward to when I was pregnant. Have you seen the Diane Keaton movie "Baby Boom"? This is what I pictured myself: former stressed out business lady now making lots of apple sauce for her baby. And I did:



Don't be discouraged by his first reaction. He learned to like it really quickly ;-) This video is making me smile, I had to watch it twice before resuming my writing.

So that was that. Today he is a big boy who likes his pasta, pizza, burgers and fries, and who only eats his veggies in order to get dessert. And who, when browsing in the crafts supply store for St. Patrick's Day stuff in February, points out mosaic lamps "Mommy, can I have one?"



"What do you want with one of those?" "Not one of THOSE, of course! We need to make one in blue and green - for EARTH DAY!" Wow, he remembered from last year!

Always thrilled about crafts project suggestions by hockey guy, we went back to that store a couple of weeks later and started glueing little blue and green platelets on an IKEA lamp:



Also we ordered some books to educate him on global warming. What he learned from the books? Number 10 from "ways I can help the Earth": Put my underwear in the freezer when it's hot. Huh??


On one of two spring days we have had so far, we planted some tomato seeds and are waiting for something to grow:



Let's not forget about the absolutely cool baking project. This is what I wanted to make (for details on "how to", see Carrot Patch Cake):



You don't even want to see my result. The carrots I "planted" were floating up, so the tips got all burned while the "earth" was still muddy batter. So today I tried out something different. Easier. BeckyCharms lemony lemon brownies:



But Earth Day is not about snacks or crafts on one specific day, but what you can do to protect the environment all year long. So this is my review on our current lifestyle using Colin's Earth Book Checklist:

Turn off the lights - doing pretty well here. Even using energy saving light bulbs.

Recycle - we are among the world champions! Every expats seems to think so, too. At the end of this post I linked up some fun to read blogs on how they perceive the Swiss trash / recycling system.


Save leftovers - leftovers can be life savers for busy people. Also trying to use them creatively. The real question though is leftover of what? Or how seasonal is our food? Let's just say, if spring started as expected we wouldn't be out of line for eating asparagus or strawberries. Right? OK, importing from Mexico = not cool from an ecological point of view. Let's have some local radish for dinner.

We are very nice to the worms. No question about that. We don't have pet worm, though. 

Share a book. Sure! Anybody wants to read the Earth Book containing important info on what to do with your underwear on hot days? 

Plant a tree. Do tomato plants count? No? OK, I have tried hard to save the maple tree that my mother planted the year I was born from being cut down. I have been raking and picking up leaves for a couple of years until I was outvoted. 


Duplex use of paper - the only way you can get by with an eager painter and writer. Also using recycled paper. Saving a tree at last!

Save water - we could definitely do better on this one. At least I purchased a "washing ball" that allows to do laundry without detergent. Plus our water consuming appliances have an "e" button. No, they don't send e-mail. They use less water. I guess.


Clean up trash. Again. Living in Switzerland, this is a no brainer.

No comment on number 10. I guess it should be an alternative to air conditioning. Our houses are not equipped with A/C anyway. We only have like 10 days of summer, so there is really no need for it.


That wasn't so bad, was it? How are YOU doing?



Fun to read Expat Blogs about Recycling in Switzerland:



Monday, April 8, 2013

Family Affairs

Recently Colin has been talking about family matters, and I felt I wanted to capture the thoughts he was having as a 4.5 year old.



Finding a wife

This one is a recurring topic. Colin likes to ask about places I have traveled to. Like 

"Mommy, when you went to Australia, did you fly Qantas?" 
"Yes, that's right." 
"Cool. They have A380s. Why didn't you take me? 
"Because we went there before you were born."
"2007?"
"No, 2004"
"Oh, the year you guys got married?"



"Exactly. The trip to Australia was our honeymoon."





"What is a honeymoon, I thought you went to Australia, not to the moon, otherwise you would have taken a rocket, RIGHT?"
"Right."
"Aren't there rockets in Florida?"
"Yes, NASA is in Florida, and if you are lucky you can observe a rocket launch."
"You did that before I was born as well, didn't you?"

On and on he goes. At some point he wants to know when my first time to the USA was.

"Oh, let me think, that was in 1997."
"So that was before Daddy even found you?"
"Yes, I went to California alone back then."


"Tell me how Daddy found you, did you hide really well?"

So as it turns out, in Colin's imagination there is some kind of scavenger hunt for single guys going on. They search and search in the dark, but it's tough because the women have hard to find hideouts.



"So once you find one, do you have to keep her, or can you keep looking?"


Who to get married to

That's an easy one: Mommy :-) 

The other day his caretaker at daycare told us Colin had a new girlfriend, Laura, and she wanted to marry him. When we asked him about it he said "yeah, that's what SHE wants - but GUYS pick out who to get married to!!!" 


Brothers and sisters

The other day after taking a shower Colin goes (whiny voice) 
"I am still waiting for my..."
I thought he was gonna say "M&Ms". Sometimes I reward him with M&Ms for jobs well done like getting dressed on his own.

To my surprise he said 

"baby brother or sister."

Gasp!

"You know I have been trying to tell you - there is not going to be another baby."
Now he actually starts to cry.
"I am so alone all the time. When I want to play with you, you are doing laundry or making lunch all the time, and all of my friends have a brother or sister,...!"

Baby Colin, September 2008

I am close to tears myself now. I just hold him tight and wish I was 10 years younger. 

Another time when he was talking about adding a baby to the family, hubby tried to explain that we, actually, I was too old now. Colin then suggested, Daddy might be getting a younger wife. 

I don't want to go where I have to justify myself for life choices or destiny and decide to ask some more questions instead:

"Suppose we had a baby, what would you be doing with him or her?"
"Playing ice hockey of course!

Phew! Case closed.





Death

Unfortunately Colin experienced Daddy's business partner passing away almost two years ago, so he is aware that we are not going to be around forever.
But he knows that he is not in any danger right now. Why? His grandfather was giving him a palm reading for fun. Obviously it said Colin would live to be 84 years old.

So when he is talking about things in the far future he sometimes wants to know if we will still be alive by then. 
"Well, nobody knows what is going to happen. We may stay lucky and healthy - or we may have an accident or get sick..."

"Mommy, you need a palm reading as well! Grandpa will tell you how old you get to be!!"





Friday, April 5, 2013

Service culture in Switzerland

 
Lately I have become frustrated as a consumer and decided to write about it. In my busy life I depend on other businesses to do their jobs just like I do mine. 
Let's take "die Post", the Swiss post office. Up until 1997 it was a public law institution with a monopoly position, and although they try to come across as young and dynamic, they still seem inflexible and slow to me. I remember as a child the postman would ring distribute mail twice a day, and a regular domestic letter needed to be stamped with 40 Cents. These days it's one mail run Mondays through Fridays and they offer
  • an overnight Service "A-Post" for CHF 1, (if you drop the letter by 4pm, otherwise it may not make it to the desired address till the next morning. And this in Switzerland, one of the smallest countries with a wonderful public traffic system) and
  • a slower (2-3 working days) "B-Post", 85 cents per letter.
In smaller villages like mine, the local post office has been integrated into Volg, a rural Supermarket chain. This actually improved the opening hours as opposed to our larger neighbor city where the post office is closed between noon and 2pm. 
The other day I couldn’t believe my eyes when shortly after 6:30pm I specifically drove to the train station where the last emptying of the mailbox (to my knowledge) is supposed to happen at 8pm. Let’s just say I learned that I was too late! What is going on? Every company tries to accommodate its customers better, but “die Post” is cutting their services while having high prices.

Another day I had to ship off 600 letters for the office. When I wanted to download the form you need to fill out in order for the letters to get accepted at the counter, this is what I was told:

I needed a "My Post Business" account? All-righty. Let's fill in the online form. Done. What? Wait a minute!! They were going to mail the initial password by B-Post??? Remember, 2-3 business days! They've got to be kidding.
I copied one of the "old" forms and headed to the post office with my 3 cardboard boxes full of envelopes. The lady behind the counter didn't even know that there existed a form that was now discontinued but offered to get her supervisor. Took her about 15 minutes. When he arrived, he took the papers out of her hands and started mumbling something. After another five minutes he looked up and said "oh, HELLO by the way!" Yeah. That's how important a customer is to him. Interrupting him from doing something important, I guess.




As much as I like the „Bill and Dave started out in a Palo Alto garage and worked their butts off to build up their Company" story, I feel they have lost touch with Earth a long time ago. 

Too busy acquiring and integrating other large companies, forming virtual inter-disciplinary teams all over the time zones, cutting some bucks here and there, where does that leave the customer? Now I am not even just talking about little unimportant me with my one notebook that I don't even have anymore. I work for hubby’s IT company where we sell servers, storage and large quantities of PCs or notebooks. 
 
Becoming a „HP preferred partner“ alone requires going through a lenghty application and certification process. If you get lost on your way to becoming a partner and you try to call (for German, press 1, for questions concerning an order, press 2, etc.) you are supposed to enter your 8-digit partner number. Ahem, I don’t have one. That’s why I am calling. If you are lucky to get a real person on the phone they ask „so who is your account manager?“ I WISH I HAD ONE!!!
 
Currently I work on a bid for a customer, who, so far, was entirly HP equipped. We got them a counter-offer that is considerably better priced, where our account manager’s name is Marc, and he’s overworked. We may not be the only ones who prefer working with them.
As I am typing this, I am sitting at the entrance / exit of IKEA Småland where Colin is having a good (and free of charge) time playing. Just as I used to have when I was a kid. 

„Ours“ was the first IKEA in Switzerland, and I have been happy to come back ever since, even if I only ended up with some scented candles or an elk cookie cutter.
You can notice the open mindedness of the management in many aspects. The broad selection offers products for any customer group, not just singles moving out of their parents' house or young families on a budget.

 
They hire good people. Friendly, engaged, multi-lingual. I was especially pleased to see a muslim lady working at the register of the restaurant (hello, meatballs!) who is allowed to wear her headscarf. Now this has been a discussion within many retail companies in Switzerland, and if others are that tolerant, then I was always there when those people had their days off. And I shop regularly ;-)
It is no wonder that I gladly applied for a job with IKEA San Diego, back in 2001. But that’s a whole other story. Anyway – IKEA gets it right!
 
 

 

One of two main Swiss owned and „co-operated“ supermarket chains where we get our everyday groceries shopping done. 
So the other day I found a recipe on the internet that required „mirin“ – a Japanese rice wine that obviously was necessary to make your own Teriyaky chicken. My coworker had found out that mirin was sold at Coop Superstores. The closest is a 20 minutes drive away, so a gave them a call, spelling the name of that exotic product to a person who was standing in front of the „international food aisle“. She told me there was sushi mix and soy sauce. Yeah, I can get that at my local market, thank you.
 
Now the people who know me guess right: I wanted the mirin, and I wanted it now!! I even called the high-end Globus foods section – no success.




With UENO Gourmet, I found an online store that carries small bottles of mirin for a steep price of CHF 15, plus shipping, another CHF 8. And then the waiting. So I called. A real person answered! And he totally got that I was willing to drive to their distribution partner who, as it luckily turned out, was within 15 minutes from our place. He sent me an invoice via e-mail and arranged that a guy (wearing short pants in February, but hey, that was up to him, right) met me at the reception and handed over the tiny bottle. 
 

So the Teriyaky chicken was OK. Not great. Certainly not better than using store bought Teriyaky sauce. But it was worth a try.

By the way a couple of days later I ended up finding some mirin at the Coop Superstore...