Early

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

Sunday is fun day!

Why a Blog

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

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