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