Making Smiles

MOVING

2008-03-22T14:13:00.005-04:00

I am moving, the blog that is. You can now visit my new blog at:

blog.missionms.org

Phil

Missed

2008-03-22T12:17:00.003-04:00

I missed the March 20Th self imposed deadline for getting the Mission:MS website launched. I always thought that building a website was real easy, wrong, wrong and double wrong. I have 70% done which were the easy parts, now comes the remaining 30% of pain.

I had a Doctors visit this week and have been given the option of switching my main medication Copaxone, to a new one Tysabri. After some research I have decided to make the move. As if the Dr didn't know it when he mentioned the new drug, he was just taking the horse to water. I now just need do inform the him and the clinic. The reason for the change you ask, no change in my base symptoms. So 7 months of sticking myself each day has made no difference, it was still the right move from the beginning but now on to a hopefully more effective treatment. This new drug is a once a month IV infusion, So even with my feeble mathematics that's on average 29 less needles a month.
What fun.

Happy Easter.

Phil

George L Geisler or Larry

2008-03-17T18:29:00.009-04:00

Our friend Larry died yesterday.

When my wife and I moved to the USA in 1993, Larry was the President of the company my wife worked for, Larry helped us both getting to grips with the big apple. He took us to our first Yankee game ( they beat the Redsox, Yippee), and explained some of the mysteries of you lovely Americans, I am still a little confused about you all though.

Sad.

But happy at the same time, I am not one to sprout the usual things we all say when people die. So here are a few things I remember about Larry.

He came from Iowa, he mentioned it often and always with a smile.
A veteran of Vietnam, wounded and not one to talk about his time there.
Silly Putty, on his desk was a well used ball of the stuff.
Larry had one of those loud but soft voices, like a sonic boom that cheers you up.
He had a laugh that only god would give someone who knew how to use it.
Smoking, Smoking, Smoking. I think Marlboro stock went down when he quit.
He was also exceptionally proud of his son Larry Jr or I should say Dr Geisler.

There are a lot of people mourning Larry, but I look at it this way. Imagine life if you hadn't known him at all........
That would be even worse.

P

Rant

2008-03-15T09:45:00.003-04:00

I think it’s time to rant about life, and the reason for the rant is I am sitting on the 6.16pm train to Dover from Penn station and my F*$king legs hurt. When I say hurt I mean really hurt. I have been busy in the store so I have been on my feet most of the day, no chance to rest which is so important with the PAIN IN THER ARSE (MS). So I won’t say I am feeling sorry for myself but it started me thinking about the little F&^K (MS) that has crept in to my life and forever f^&ked up something that was moving along so nicely. And the longer I am dealing with it the more I learn to hate its insidious ways. There are very few things in this world I hate (I even hate the word hate) but the F&^K (MS) is now top of the list, right above broccoli, yes I really don’t like broccoli. It reminds me of green turd (a poo in American) with a tail YUCH!

So here are the top ten things I really hate about MS.

1- Pain
2 -Getting up in the morning, and having to inject my Copaxone. The site reactions are a treat, nice red mounds of pain.
3 –Pain.
4-Fatigue, Imagine getting up in the morning after 10 hours of good sleep and still being knackered (exhausted to you Americans). NOT FUN
5-Pain, yes this is getting repetitive and I am not a being a big baby but this can really be quite tiring.
6-Having to take 150mg of Lyrica and 200mg of Provigil a day, these drugs are still chemicals and god knows what else they are doing to me. I am still not convinced that they work all the time, but I am being a good little boy and popping them when told.
7- Did I mention the pain.
8-MRI machines, a great advance in medical science, but I loathe the friggin thing. Over the last 10 months I have spent about 16 hours in them, hours I will never get back.
9- The pain, it may be boring having to read this so many times, but that is not as boring as the pain!
10-The “You look so good” line that people say with regularity. I look good because of genetics not because of anything else. I feel like shit most of the time.

There you go my nice little rant is over, done and finished. Boy do I feel better now.
Wow this is good it gets me thinking about even more about topics to Rant about. Maybe my next one will be about, New York Taxi Drivers and why we should test cosmetics on them and not on animals.

But no I think one rant a year is more than enough, I will go back to my normal little grizzles.

MissionMS.org

2008-03-13T11:00:00.002-04:00

OK, it is March 10th 2008, I am going to have the Mission:MS website up and running within 10 days.
I have had a creative block ( could be the weird way my brain is set up and not a block at all ). But the last 24 hours I have made a few major advances. I sit on the train each day now typing away, creating the text for the Site. I have acquired pictures ( borrowed more like from other MS sites )and created text ( plagiarism sounds so harsh, but I have borrowed content from multiple websites ). This reminds me of being back at school and having to do a report, you hit the books and rewrite the printed text. I can see from a lot of the websites this is the standard mode of operation. I am not alone and I hope no one gets offended.
A really good disclaimer will be on the website.
Phil

Physical Therapy

2008-03-10T19:18:00.005-04:00

Today was a visit to the St Barnabas Physical Therapy center, where the lovely Patricia kicked the sh*t out of me. Being Monday I usually get Andreas a nice chap from Greece who loves Football ( that's soccer to you Americans ). I really enjoyed it when we discussed Manchester United ( horrible Team ) being beaten by Portsmouth 1-0. That is similar to the New York Yankees being beaten by a Minor League Girls Team- BTW nothing against Girls baseball.
Back to my workout, Patricia in her infinite wisdom decided to increase all of my exercises. I though working out was boring before, we attained new levels today.
But I did all the physical tortures and still left the clinic on my feet, I had thought of pretending to be exhausted by I think they all see right through me now.
So I am really tired, but whats new.
P

Switzerland

2008-03-06T08:49:00.003-05:00

I am off to Switzerland the first week of April, this is a business trip so I will have do some work.

I will add some pictures of the trip when I get back.
P

The Train

2008-03-06T08:28:00.002-05:00

I never thought that my morning commute would be so relaxing as well as being productive.
As you age ( I am still a spring chicken, cluck cluck) you begin to cherish moments where you can switch off from the world. I never thought it would be on the 6.56am to Penn Station, with my fellow 500 travellers. But I now am able slip my headphones in my ears and turn my Ipod on and then mentally drift. The 35 minute ride in to New York ( That is if the blooming train is on time) relaxes me no end. It gives me the chance to let my mind wonder and dear reader this is one scary mind to do that with. I don't know why but this half hour riding towards 10 hours of work I enjoy, yes I am a little warped. Maybe it is the familiarity of seeing the a New Jersey Transit carriage, transporting the same faces each day. We all have our position on the platform, and if the driver isn't being a silly sod the train stops at identical point each day. Maybe not having to think about the trip frees us. And every once in a while my man NORMAN COOK- better known as FAT BOY SLIM- plays on my Ipod and my world returns to full speed ahead.
As I have said before listening to music, is defiantly life's soundtrack.

Phil

March

2008-03-04T20:24:00.002-05:00

Crikey March has started, a month of birthdays (mine included) and the clocks going forward.

A few updates first:

I have to admit I am very very slowly setting up the Mission:MS website. I am a professional talker, when it comes to putting the chat in to words and pictures I have enormous trouble. I have been very lucky in being sent Thom Phar from GoDaddy.com to help me through this process, I must be driving him crazy (he always sounds calm though).

Had another MRI marathon yesterday, I think my Doctor really likes me, judging by how many pictures he has of my internal organs and nervous system. I do have to admit I see the pictures and I am very impressed how good they look. I may ask Fiona if I can frame one and hang it on the wall of the living room.

Also a two-hour trip to the dentist in the morning for a root canal. All I can say is I left with a numb mouth and number wallet.

Thinking back to the MRI, what a busy place the imaging center was. Full of worried looking people, It is a shame that I feel like an old hand at this lying in an MRI machine. I am what you would call Panamax with these machines and this time two technicians the calm Andre and efficient Jay got me through. God bless them both. My last experience wasn’t good I was beginning to panic, but I think the pain from the root canal took my mind off the whole thing this time.

Lazy

2008-03-01T06:43:00.000-05:00

Saturday morning, I am just awake and getting ready to go to work.
I realise how long it has been since I added a few words here, shame on me.
I will be adding more later this morning.
P

Missing

2008-02-13T08:42:00.002-05:00

I lost my favourite headphones made by V-Moda, looked everywhere and not a sign.

This caps off an evening where I spent 30 minutes driving 1 mile up the hill from the train station. Let me explain. It started to snow heavily yesterday afternoon so I hopped on the train got to South Orange train station, where there was more white powder than at an Amy Winehouse party. Snow all over the place, no scraper for the windows (blast). Finally got on my way only to find my car (German) with rear wheel drive couldn't make it up the hill home!!!
After lots of cursing and general shouting, I drove towards Maplewood (next town over) and swung the other side of the mountain where there is a more gradual road up to my house.

Now the headphone part, I really enjoy listening to music on the train- so no music this morning- I miss Elvis (Costello that is), and Keith Frank ( Zydeco music), you should check him out. No Boom Town Rats, really in to them at the moment. Music is a major part of my commute, so on the way to work I bought a pair of sony headphones for the ride home.

Very Very Busy

2008-02-08T08:22:00.000-05:00

I need a clone, or maybe a few more hours in the day about 5 should do. Things are getting hectic. Mission:MS became a legal entity last Friday- Thank You New York State- which puts pressure on me to get my bum in gear and raise some money ( it is a big bottom I have, so hopefully the money will match).

I have hair, The last 8 years I have cut my hair so short my wife calls me a toilet brush ( I don't understand that comment as my hair is a lot shorter that that). But now I am beginning to have a Mane, I just bought my first hair brush in ten years and now I use conditioner. Crikey I will no doubt start going to a stylist when it needs cutting, I miss my visits to my old school Italian barber Tony, with his small talk about his 10 kids ( Tony is over 70, but still works 6 days a week). The joy of his sneak hot towel attack, wow those things hurt.

The physical therapy is making my legs hurt alot more, is this supposed to happen?

Phil

Balance

2008-02-02T11:56:00.000-05:00

Had a very interesting visit to the Physical therapy Center. After some basic exercises and a balance test we discovered my balance needs improving. This will be done on a special machine which a platform that I have to keep level by shifting my position. Harder than it sounds but a lot of fun. Patricia my Physical Therapist is really brilliant.

I have a lot of respect for a really excellent website called joolysjoint.com. I may of mentioned this site before, but it is worth repeating how good a job they do and how important these places are to MS sufferers. So JJ keep up the good work.

Phil

Nice meeting

2008-01-31T08:40:00.000-05:00

Had a meeting last night with Kerry and Katie, our Media & PR super stars. The style of MissionMS has been formulated as well as a logo (I will post a copy soon). Working on direct mail pieces, which are the first contact between Mission:MS and potential donors. The style is brilliant and very creative and it will also be adopted as the format on our website. Exciting!

I start Physio this afternoon, I am sure it will be lots of bending , stretching and creaking of my legs.

An eye opening discovery, and I hope I understood this correctly. To qualify for Medicaid in the USA you need to earn under $1590 a month and have less than $ 2000 of financial worth. You will then be given help in paying for an MS drug, the only problem will be the approximatly $ 350 a month co-pay (holy sh*t). Which even with my bad maths leaves $ 1240 a month to live on or to make it sound even more scary $40 A DAY. I don't know how people do it.

Phil

Quick

2008-01-29T08:42:00.000-05:00

This month has flown by, it is almost February.

Still working on setting up Mission MS, paperwork, paperwork, paperwork. Thank goodness for our Lawyer Ann Pincess Burman. Almost there just a few more hoops the government are making us jump through.

I need suggestions of content for the website, all ideas are welcome and help would be appreciated. The main objective of the site is to get Mission MS noticed, as well as information about fund raisers and how the money is being spent. So please, please help.

Phil

Vacation

2008-01-24T17:17:00.000-05:00

I have just had the last 8 days off, what joy no work. My older brother Tony came to New Jersey for a visit, so we had a great week zooming around the North East of America.

I start Physio Therapy next week, the therapist is very nice, and not as I thought a Russian Shot Putter wanting to break me in to little pieces. It would appear as though my left leg is having problems so I will be working on getting it in to shape.

P

GoDaddy

2008-01-15T20:34:00.001-05:00

I have been in contact with the lovely people at GoDaddy.com. I sent a letter to the President asking for help with the Mission MS website. So yesterday Nima assistant to Mr Bob Parsons President of GoDaddy called offering lots of help.

Note to world.

I may be biased, but if you ever need a domain name, or help building a website only go to:

The older I get the more I realise that companies are their people, so good people = good company. GoDaddy are the perfect example of this, so more power to them all.
I feel excited that the work can start on an online presence.
Phil
PS Not to whammy myself, but I have felt really good the last 2 days.

E-mail

2008-01-11T13:20:00.000-05:00

I try to think that I have a little tech savvy, and to be honest I have spent rather a lot of time holding for a support technician, when I have killed, Deleted or just plain screwed up a piece of technology.
So last night I was very pleased when I was able to set up my own e-mail for Mission MS. I will point out that after I read the instructions I think my 7 year old daughter could of done it quicker than I did. But set up it is, so my new e-mail address is.

Philip@MissionMS.com

I have a Physical Therapy Evaluation next week, I have visions of a woman who looks like a Russian Shot Putter, trying to bend me in half or torture secrets out of me. To say I would prefer to have my legs waxed is an understatement.

Phil

The joys of modern flipping technology

2008-01-08T15:31:00.000-05:00

I was in the MRI machine yesterday morning for over 2 hours. It felt like 2 weeks underwater with no aqualung. Next time they are gonna have to give me some major drugs, just to get me in the same room with that blooming machine. And if that wasn't enough I had 1 hour 30 minutes in the dentists chair right after.

MRI results next week and the fitting of my new crown.

They only thing that got me through the MRI was thinking of the revenge I could have on my Doctor, when I finally get his wife in to my place of work. His wallet will take a year to stop hurting.
The dentist will be easier I am gonna start sucking on cloves of garlic 6 hours before my next appointment.

MRI

2008-01-07T07:47:00.001-05:00

Just enough time to make a new post, in 15 minutes I am off to have a nice long MRI. Boring is the word of the morning, I do wish they could make a faster machine. Thank god I am not claustrophobic because that coupled with my fidgeting would make the MRI unbearable.

This is part of my 6 month check up, so lets hope I don't have much change.
Phil

2008

2008-01-04T18:12:00.000-05:00

It's the start of 2008, here are a few things I hope for.

World Peace.
Winning the lottery.
Gas at $1 a gallon.
I become President.
MS gives me a break.

Now the first 4 are highly unlikely, I just hope the 5Th will be good. But if not, I will take winning the lottery as my second choice. I would prefer to be rich and sick, than poor and sick. I don't ask for much, anything north of 20 million would be just fine. Doesn't this make me sound like a self centered bugger, and dear reader you would be 100% right.

I never used to think about the coming year, but things change and situations occur. So I have started thinking about the next 12 months, what I want to do, what I can do and what the PAIN IN THE BUTT ( MS ) will let me do.
So here is a list.

Fly Fishing.
I started to get in to this last year, lots of fun and my guide Adam is really understanding of my condition.

Flying Kites.
Even if I have to buy a wind machine, or eat lots of beans. This year I am going to fly my kites!
Need wind, lots of wind.....

Listen.
This is going to be the toughest. I need to listen more to my Wife ( I think I'm always all ears ), and my Doctor and Nurses., they keep telling me to slow down. he he he he slow down, me, NEVER.

Charity.
This is the year of Mission MS. A year to raise money, a year to care.

Phil

Unhappy

2008-01-03T08:14:00.000-05:00

Not having a good day, bad over night my legs are really being a pain. Woke in the middle of the night and both of my arms were numb. Oh Bollocks!
I have called in sick today, the effort just getting to work would finish me off, I think I over did it yesterday. I was busy in the store and didn't take the time to rest. Stupid!
I had a quick chat with Judy the lovely nurse at my MS center and she is going to send me for a Physical Therapy Evaluation, sounds like a lot of fun. Next Monday I have an MRI of my brain and lumbar region, this is boring, boring and did I say amazingly BORING. It's part of my 6 month evaluation, I can't believe I have been on my Copaxone almost half a year. I must be honest I can see no difference, that's why I am having the lengthy MRI they are looking for more lesions. I will try to get a scan of my MRI and publish it here. This will also confirm that my brain is in my head and not in my arse.....
Phil

Early

2007-12-29T04:42:00.000-05:00

4.30 in the morning, the pain in my legs have woken me up, that sucks. I am going to try go back to bed for a couple of hours, this is a work day so no chance of taking it easy.
Trying not to feel sorry for myself but yesterday was a challenge, at times I was finding it hard to move around. God knows how people put up with this, I have only had to tolerate MS for a short while and already it's beginning to really piss me off. Balls, bollocks, bottoms, bums and any other cleanish swear word I can't think of. Note to self.......Look up clean swear words, It's not good that you only know all the really bad ones :-)

Phil

Christmas

2007-12-28T05:37:00.000-05:00

It's a few days after Christmas, my two little darlings. Abigail 7 and Ellie 5 had a lot of fun opening their presents, our house looked like a paper recycling plant after. I have always heard that you shouldn't spoil your kids but I will and enjoy doing it. It is amazing though how many different things you can buy little girls these day. An example is this robotic parrot that Abigail wanted, this thing talks, dances, snores when it sleeps and even farts, blooming thing has a remote control and pushing a button on it produces a wonderful raspberry.
The New Year is just around the corner.
P

Sunday Snow

2007-12-16T10:27:00.000-05:00

Just finished using the snow thrower, a couple of inches of the white stuff over night. Enough that I need get the snow eating green machine out. I am still doing this job myself, until that is the depth of snow is to much, and then it's a call to someone to do the job for me.
When I first moved in to our house, after years in an apartment. I thought no problem with snow, I will buy a machine to tackle the job. How time has changed my opinion, Snow Sucks.
I want to move to Hawaii.

P

Mission MS

2007-12-15T12:20:00.000-05:00

Time for a little update.
Mission MS is now official, thank you Ann Burman (Our lovely Lawyer).

We will be holding a Charity Auction September 2008 this will be hosted by Antiquorum. So far I have been promised over 40 watches from Watch Manufacturers as well as Watch Retailers around the USA. Here is a little list.

Manufacturers.
Cartier, Audemars Piguet, A Lange & Sohne, Franck Muller, Jaeger Le Coultre, Parmigiani, Chopard,I.W.C, Piaget and on and on.

Retailers.
Cellini, Armstrong Rockwell, William Barthman, Tourneau, Kenjo, Adlers, DeBoulle, Govberg and on and on.

This list is very small and within the next few months I will be launching a website listing everybody.

All these companies have been very generous in supporting my Charity a Hug and Kiss to them all.

I have started to contact MS websites, other MS charities and Doctors. To start setting up the network we will need.

I am especially working on a group self help project, based either locally and through the web.

I am still working on getting the drug companies on board, so wish me luck.

Enjoy the rest of the day.
Phil

Lazy

2007-12-15T11:59:00.000-05:00

Written English

As you all may of noticed by now, my pathetic use of the English language stops me from writing an entry everyday. This is because I don't want to appear to be a right Rodney (A Very English Expression), so it does tend to take me ages to even compose a few lines.
But going forward this is going to change, if you are the type that fusses over the incorrect use of the English language please go to:
http://www.oed.com/
Which is the Oxford English Dictionary home page and this site should give you many hours of pleasure you may even find a mistake and delight in sending a letter to them pointing out the said mistake. Punctuation somewhere in that last sentence would of been good :-)
As you can tell I always have an excuse for being a little lazy. But back to ME, going forward I am going to be a little bit badder with the old English. So please forgive, forget and visit me often.

Phil
PS I am still gonna use spell check, i'm not that lazy

Feeling Good

2007-12-10T12:17:00.000-05:00

Monday lunch time, I just had a Buritto yum yum.
Feeling good the last 2 days , this makes a change as the last few weeks have been a real
low point.

One of the chaps at work decided yesterday, he needed to to almost chop his left arm off. Blood everywhere I am told, but after great treatment from our local hospital St Barnabus, and a few hours of surgery he should be back to normal soon. Hope that process is as quick as possible.

My father John, or the "Silver Fox" as one of my brothers has nick named him, has been admitted to hospital with a chest infection. I hope he gets better soon, he gives me a hard time about not looking after myself. I know he reads this so.....
TAKE YOUR OWN ADVICE :-)

P

No Smiles today

2007-12-04T06:14:00.000-05:00

6.15am been awake since 5.00am. Not feeling good at all.
My right eye hurts and the focus is out a little, my legs really hurt and I generally feel like sh*t.
I am going to call in sick today, I don't want to but I need rest, as i don't want this to get any worse. I haven't been feeling great for a few days now. This eye thing is beginning t0 bother me a lot, especially this last week. I hope the rest helps as the next step is a trip to the old saw bones. Where the only treatment is another course of Steroids, which make you feel like superman for a few days but slowly you come back down to earth and the aches and pains return.

I did go to the MS conference Sunday, very interesting. I will do a post on the morning soon.

P

At last

2007-11-24T15:50:00.000-05:00

I can finally tell you the name of the charity.......
Drum roll please.....

Mission MS

Explains exactly what it's about, with the flexibility of being to help with all aspects of MS.
I can't claim credit for this name, the girls at Kinney and Kinsella came up with it.

If you are interested in helping with the launch of this Charity, please e-mail me at:

Mission_MS@mac.com

Just let me know how you can help, and what your skills are.

Philip

Turkey Day

2007-11-22T09:37:00.000-05:00

No post yesterday, at work and having problems. Problems with my legs that is. The pain ramped up to a new level and the pain medication the Doctor gives me stopped working.
I hope this is because we are really busy, and I am having little opportunities to rest during the day.

Looking forward to our Thanks Giving at our Friends, it will be great food with a wonderful family. Plus I get to act like a pig! 4.00pm today is kick off for the feast, so think of me diving in.
I will be like our Labrador Dog at feeding time.

P

48 hours to Turkey Day

2007-11-20T19:43:00.000-05:00

Uncertainty, that is the key to MS. From one day to another you just don't know what the next 24 hours will bring. Yesterday I was tired and I mean really tired, I also fell up some stairs because I couldn't raise my one of my legs quickly enough. This is the first time I have fallen that has not been caused by Beer. Today was pain in the legs, unfortunately I have to stand nearly all day long , I work in a Jewelry store and it is the Christmas/Holiday season. So we are busy, busy, busy. No time to rest the old legs, pain killers are all I can rely on....

We have been asked to celebrate Thanks giving with our friends Levent and Kara as well as their lovely kids, Abbey, Emma and Bella. I am looking forward to this as Levent is a great cook and always comes up with something really different to make us all fatter. I will do the hard part and supply the wine and the food testing :-)

I am beginning to listen to a lot of Fat Boy Slim on the IPod on the way to work each day, as well as ELO. What a mix.

H & K's

Phil

The kids are in bed

2007-11-18T20:15:00.000-05:00

A nice Sunday with the family, the little angels are in bed talking up a storm. Lets hope they fall asleep soon. Their capacity for energy is boundless as well as annoying the heck out of each other. I commented today that when you have kids you begin to sound like your parents, "be quiet", "keep still", "walk faster" and the most often used, "didn't I tell you to tidy up your bedroom". All I need now is the grey hair and a few more wrinkles and I will have become my father. I would like to be as skinny as he is....

The day was spent shopping, and lunch at a local Mexican restaurant, yummy! A rather enjoyable day, and it's winding down now.

Phil

Visiting Websites

2007-11-17T10:04:00.000-05:00

I now spend a lot of time surfing the Internet, visiting MS websites or trying to find new ones.
I was just at Joolys Joint, a brilliant site! Reading some of the postings can be an eye opener.
I read one post of a guy who had a good job, a wife, kids, house. He develops MS and now according to his post he is divorced and has lost everything else. You have to feel for this guy and sympathise with all that he is going through. At least he is reaching out and I hope his life gets back on track.

If anyone runs across an interesting website please e-mail me a link.

Tomorrow I am spending the day with the Fiona and the kids, I might try to fly a KITE!!!!
I do seem to be obsessing about kites and the weather, must a mental quirk.

Phil

A few ideas

2007-11-16T09:27:00.000-05:00

I am going to attend a conference about MS, hosted by my MS care Center and Dr Herbert (my Doctor).This will on December 2nd and I am looking forward to the experience. It will help me focus a little better the aims of my Charity or at least craft my message more eloquently.

My aim or should I say the the Charities aim, is to help MS sufferers with the day to day quality of life aspects we all have to deal with. This can include physical as well as psychological challenges, but more focused on the emotional aspects of coping with MS. But I think being flexible in our aims is key. More later.

Back to work.

Phil

Sick

2007-11-14T16:53:00.000-05:00

My cold has become a chest infection, so now add antibiotics to the list of medications.
You would think I could catch a break, but no now I have to add a congested chest, lots of hacking coughing and sore throat. Oh Bollocks! ( a very English word, with multiple meanings )
have a look at the wikipedia page on it.

http://en.wikipedia.org/wiki/Bollocks

A great word to describe my current physical state.

Our third board member has joined the team, the lovely Katie Kinsella. Media and PR maven ( do people still use that word). You may remember we have a PR firm "Kinney and Kinsella" handling our message. As you may of guessed shes the Kinsella part. Another piece of the jigsaw fits in to place.

Thank god for spell check, I just ran it on the last few lines and got 10 mistakes. Spell check make a dodo like me look like a genius. Now to work out how to check for grammar.

Phil

I must be a whiney SOB

2007-11-13T19:50:00.000-05:00

Another day of fun and pain.
To add to my troubles I have a cold, which didn't make it any easier today when I started to have difficulty walking. When I say difficulty I mean having legs made from lead, needing to hang on to tables, chairs and walls, I don't remember it being this bad before.
I hope it is because of the cold, I want this to stop asap! Whine Whine Whine. Feels good to type about it.

I will be able to tell you the name of my Charity next week, I am just registering domain names and waiting for the lawyer to say OK.

I now have my first board member. I met with our lawyer Ann Burman last week, and when we got to the part of other people needed to run the Charity. I was told to think of the most trustworthy person I knew and make them Treasurer. That list only had one name on it, my friend Lowell Mandelblatt. I asked him today and he agreed to be treasurer, just so you know Lowell is the kind of guy you would want to share a foxhole with (if you are in to 2nd World war History, you will know what I mean. If not, read a book about it). Since earlier this year when my MS really kicked in Lowell has been someone to talk to, bulls**t with and a great distraction for those days where it has been hard. I can never thank him enough.

Phil

Really Really Tired

2007-11-12T19:43:00.000-05:00

I can't believe how tired I am, yesterday I hardly did anything yet still I was tired. Slept well last night, woke this morning and still exhausted. This sucks and to add to my day, my legs have started hurting again. I haven't taken my Provigil ( for the fatigue ) or my Tramadol ( Pain ) the last two days, this is what happens when you don't want to take too many drugs. Tomorrow is another day, so I will start popping pills at 8.00am.....what fun. Yet everyone I meet tells me how good I look, if only they knew.

Spent the morning with my friend Levent, he who loves BMW's. Or should I say obsesses about them. I think he has four of them now, Kara his wife must have the patience of a Saint. We had a lot of fun picking up my new car, yes a BMW.

Tomorrow is another day.

Phil

My prediction

2007-11-11T21:04:00.000-05:00

Evening all,
As I earlier posted the weather here in NJ was a little windy and cool, what a beautiful day it turned in to. No wind and getting warmer. Damn, Blast and bums......
No kite flying again!

I found an interesting MS site

http://www.multiplesclerosissucks.com/

A very different view of MS, Written by a very interesting chap who likes to remain anonymous. If you read his site you will understand why. And he is 100% correct, MS Sucks and every once in a while you want to snap the neck of the next person that says "you look so good". Yes I look good all because I have enough Medication running around my system to poison a small city. As well as the fatigue I feel makes me too tired to do anything. So remember the next time you run in to someone who has MS and they look OK they may not be. The list of things they are going through, are at the lowest level annoying and at the upper level totally debilitating.

Enjoy the rest of your day, I'm going to bed as I am really tired.

Phil

Bagels

2007-11-11T08:35:00.001-05:00

Sunday morning is bagel morning, we have a great Bagel store in the next village over called Bagel Chateau, run by a great guy named Al.
Never tried bagels growing up in the UK, I had to wait till I moved to New York to sample my first. To say I'm hooked is a slight understatement. I sometimes feel like the bagel version of Homer Simpson. HHmmm BAGELS. The girls also love bagels especially with loads of Lox spread, that is cream cheese with cured Salmon. Enough about my expanding tummy.

My friends Jack and Cristina had their official engagement party last night. I couldn't go as at the end of each week I am exhausted and my legs have been hurting again. Two lovely people and I wish them many years of Love and Happiness. Big Kisses and Hugs to the both of you.

In the continuing saga to fly a kite, it looks a little windy outside, and cold. So I will try to fly one of our kites later. Remember the old saying "Men plan, and God laughs" so look for flat calm weather in New Jersey later today.

Phil

Cor blimey, we got a lawyer.

2007-11-07T20:02:00.000-05:00

What a nice day. Cool weather, aahhh a chill breeze first thing in the morning standing on the train station platform, Heaven.......

I can now announce we have a lawyer.
Ann Pinciss Berman has taken up the fight of dealing with the resulting mountain of legal papers required to start a 501C3 Charity here in New York. I welcome her aboard and know that our legal back is now covered. Plus she is great to talk to and is willing to put up with me.

Got a call and e-mail today, asking for help with a friend of a friend who may have MS. What a roller coaster this person will have to go through, just to get to a diagnosis. I hope that it turns out to be something like lymes disease, if not the next few months are going to be rough. MS affects each person in their own unique way, physically and emotionally. I look no different now than I did before I was diagnosed. Maybe a little more tummy bulge, but still film star good looking
:-) ( yes my vision is still OK). But each day is unique and I still enjoy life to the fullest.
The Beatles had it right " All you need is Love ", and maybe Laughter, fun, commitment to following treatments, energy, calm moments, kindness and the belief that the S.O.B called MS will not win. EVER.

I have also come to the conclusion that life is about the people around you, the people you interact with each day, the friends who call just to see how you are and our families. I now look at the world through new eyes. MS has clouded many things but made others clearer.

Phil

Another week

2007-11-06T08:34:00.000-05:00

Sorry for not posting for a few days, trying to think of things to say....
Imagine me stuck for words!

Setting up a Charity is a lot harder than I thought, but the best things in life are usually the hardest to accomplish. As I read more about the effects of MS on people, both mentally and physically it strenghtens my resolve to help anyone I can.

I am beginning to understand the psychological impact that being diagnosed with MS can cause a person, I think so far I have not had that Oh S*&T moment, must be the support I am getting from my wife, family and Nurses as well as Doctors. But for others it must be hard as hell.

Please look at these websites, I like what they are doing.

http://www.chumsweb.org/ and http://www.msexpressions.org/

I tried again to fly a kite this weekend, will the weather never stop playing with me. I looked out the window and noticed the trees swaying like crazy. Got the Kids, Wife and dog ready, jumped in the car. And in the 5 minutes it took to get to the park..........CALM.....What to do.

Phil

The air in here

2007-10-30T16:25:00.000-04:00

Back to work after a lovely day off, those days off get shorter and shorter.
To cap off the gloom of having to go to the office today, not that I work in a bad enviroment in fact it's the reverse. Our Air Conditioning went down for almost the whole day.....

P

Wind

2007-10-28T16:14:00.000-04:00

I am having a wind problem, I know you maybe thinking that there is a tablet for it, but I refer to the weather type of wind. I keep taking the girls and anyone else who wants to join to the South Mountain Reservation to try fly a kite, this is a 90 second ride from our house. I check before we all leave that there is loads of wind, we get to the field and still it's blowing a gale. Once I have put together a kite.....NOTHING!!! No wind not even enough to blow out a candle. AAAAAHHHHHH. This has now happened 3 times in as many weeks. I hope that winter is almost on us that the wind levels will increase, and I will get to fly our kites.
Flying kites are a good life lesson for my girls, you have to keep at something to have success.

Auction House

2007-10-27T21:05:00.000-04:00

Another busy day at work , the joys of working in a retail store is having to drag my sorry self in to New York on a Saturday. I am glad that I now have the next two days off. So whilst your all going to work Monday I think I will lie in.

The auction has a venue, I had lunch today with two nice chaps from one of the worlds leading watch auction houses. They agreed to run my event here in New York next year. Yippee another thing I won't have to worry about.

Have a beautiful weekend.
Phil

The Weather

2007-10-25T20:54:00.000-04:00

The weather has turned chilly and damp and this morning made a change from hot and humid. I find it funny that I still mention weather in conversations, e-mails and now a blog. Talking about the weather is a national past time in England, I can't seem to shake the habit. If you run out of subject matter when engaging in small talk you can go on and on about the weather, and people will be polite and seem really interested.

Had a follow up visit with my Doctor yesterday. My last little bump in the road or should I say flare up in my symptoms, were soon calmed with a little help from Steroids, Pain killers and a little pill to combat fatigue. I have had so many chemicals go through my system recently I must be classed as a toxic hazard. The joys of medical science combined with the intricacies of chemistry, quite amazing and I am glad they work so well together.

I am still making phone calls trying to set up my charity auction. I am the type of person with absolutely no patience, so the wait is killing me.

I have met two very nice people this week, both lawyers who are giving me a helping hand in the legal department. I didn't realize that setting up a charity involved so much law and effort. I may have to stop making lawyer jokes now as they were so kind and didn't give me a hard time when I asked a dumb question. :-)

Phil

Additional content

2007-10-24T11:45:00.000-04:00

I have just added a guestbook and comment applications, on the right margin of this blog.
Feel free to use them.

Phil

Nice phone call

2007-10-23T20:15:00.000-04:00

Challenges today, Hot flushes, Eyes disjointed and really, really tired. I had taken a little pill this morning to help with the fatigue but it made no difference. I class this as a good day.

Got a call from Denise Lynch and a colleague (sorry I forgot his name- please forgive me, but even before MS my memory was useless-nice chap though) who work for Teva Pharmaceutical, makers of the MS drug Copaxone. They called me after I reached out to their local representative, great call, caring people. I look forward to driving them crazy with stupid requests and pleas for help.

Started thinking about the website today, which direction to take it and how it will be managed.
When I developed MS I found some excellent and informative sites with the help of Google, but as I delved deeper in to the mysteries of Multiple Sclerosis, I found myself going backward and forward to numerous sites and still not finding all the answers to the questions I had. We won't be able to cover it all, but I will give it a good try.

I NEED HELP!!!!
E-mail me if you want to lend a hand.

Phil

How to Name a Charity

2007-10-22T21:21:00.000-04:00

Just in from a meeting with all the Ladies at Kinney & Kinsella. What a wonderful group who really got to work on the creating the name.
I can't tell you it yet as I have to get it all lawyered up, but it's brilliant, creative and gets the message across.

Making-Smiles will stay as my blog so keep checking back.

Phil

I am going to need people with writing skills, who can help me start the a website.
Any volunteers?

The week ahead

2007-10-22T16:13:00.000-04:00

This is going to be a busy week.

I hope that the name Making-Smiles is a suitable name for the type of charity I want to start. Please let me know what you think.

There are lots of people who develop MS each in a different way. Some have one attack and then experience remission lasting years and others who have to deal with various degrees of the disease everyday . Getting medication, support and learning how to cope with attacks is very important and hopefully Making-Smiles will be able to help in the future, if only in a small way.

Today I am seeing Katie and Kerry the wonderful girls that run Kinney and Kinsella, a brilliant PR and Media firm in the heart of New York. These two beautiful people have agreed to help with my charity. Getting the message out the right way is very important, and K & K are the best at that.

Heat, I used to love heat but now I loathe it, it makes my symptoms worse. I have found that instant ice packs placed on the back of the neck a god send. The silly thing is I have to take a hot shower in the morning before I inject my medication, this is a daily ritual I am just getting the hang of. I have stopped asking my lovely wife to do the jab, as she is more asleep in the morning than I am and it hurts enough as it is.

Water, is now my best friend. Lots and lots of water. Buckets of the stuff.
As well as the odd beer. I never thought about keeping hydrated before but now it's a must.

Have a look at chumsweb.org , brilliant.

Phil

2007-10-21T09:56:00.001-04:00

Sunday is fun day!

Why a Blog

2007-10-21T07:51:00.000-04:00

Sunday morning, awake at 5.00am. Can you believe my back hurts...

Already realising that my posts will be all over the place, each time I think of one thing to write another five come to mind. I suppose I will have to get some discipline with this.

Here is why I am starting this blog, which is an idea of my brother Peter, Thank you Pete.

Multiple Sclerosis is the leading Neurological disorder in the 20-50 age group in the USA. Every hour another person in America is diagnosed with MS. If you don't know what MS is, I am going to fill you in on how it effects me over the next few years. You know it's going to get repetitive and boring, but that is what MS is all about.

I have been diagnosed with it and because of my situation in life, where I am lucky to have a great family, brilliant friends and working for a wonderful family doing something I love. Not forgetting the dedicated and caring team at The Saint Barnabas Multiple Sclerosis Care Center.
I will be able to cope.

So I am going to try and help other people with MS by launching a Charity. This is going to take lots of effort and I will need to raise loads of money. My aim is to make people suffering from this have a better life and bring them a smile. Because in life I have found that Smiling is better that frowning and laughing is miles better that crying.

So this blog will follow the start of this new Charity, and be a way of letting others know what help I need, If you can help me or have advice please e-mail or leave a comment. Over the next few weeks I will explain how I am going to raise the money as well as how it will be used.

And if you have MS, I send you a big hug.

Phil

Making-Smiles

2007-10-21T07:19:00.000-04:00

It's Saturday and I am at work.

This is my first post and as the written use of the English language is not my strongest suit forgive my appalling use of it now and in the future. I can talk your ears off and make a living doing so, but the written word can still be a big mystery to me.

Just starting to set up this blog. Lots to say, lots to explain and loads of help needed. This blog will keep friends, family and anyone who cares to read up to date with things going on in my life, which this year has become quite interesting.

Not knowing where to begin, lets start this last May 2007 when the old body started to miss fire. I woke one Sunday morning with a splitting headache, double vision and pains throughout my body. To say weird is an understatement. Quick trip to the opticians and the nice chap there explained the my vision was perfect apart from the Double Vision. Then off to an Eye Doctor the next day and same diagnosis, but told something else in my body was probably causing the problem so I should see my regular Doctor for a physical. My wonderful wife got straight on her cell phone and arranged a full check up the following day. Now I could keep this going and make this a very boring read, and I do love to fast forward movies just to see what happens at the end. So after one optician, one eye Doctor, one Internist, 4 Neurologists. An X-ray, Blood tests I seem to remember loosing count after 19 vials of blood, A spinal tap ( I didn't like that one), and 3 MRI's. I have been diagnosed with Multiple Sclerosis.

So within a few months my life has changed, some things have got harder and others better.  Physically things can suck, but I have great Doctors and support. More about my MS center in later postings and all the caring people who are helping me cope.

I have a wonderful wife, the lovely Fiona, and MS has made me appreciate and love her more. I may not tell her that enough, but I do. My two kids Abigail and Eleanor a joy watching them grow, a father couldn't be prouder. Our Families who live on the other side of the Atlantic Ocean in various parts of the UK, a beautiful collection of people. Everyone is helping and I couldn't feel happier.  

I have Multiple Sclerosis but I am trying not to suffer because of it! 

Phil