NMSS PPC

[HVAC]

I have been gone for a week. I was up in D.C. at the Public Policy Conference. It was fortunate to have been sent for my second year. When people raise money for the NMSS you also raise money for people to tell their stories, your stories, to elected officials. All the statistics in the world mean nothing to Congressmen and Senators. When one of us tells our story in their offices and they see us it has more of an impact. In our state group we had RRMS, PPMS, and SPMS. We had people on disability, people working, and, who are not eligible for disability. We had all ages. We had a veteran, a lawyer, and a doctor with MS.


I met activists from all over the country. It was a lot of work for all of us, but important. It is all day meetings and no sight seeing unless you come early or stay few days later on your own. You do get to see the insides of the Congressional and Senate office buildings. Our message to our elected leaders was simple we need to continue funding for Research. Also for respite care to give caregivers a break so people with MS can stay in their own homes. There were visible and less visible disabilities. We laughed as we shared stories of cognitive difficulties (losing keys and wallets to find them right in front of us), of ungraceful moves, and saying the wrong thing.

Everyone came to the diagnosis differently. Many had and have seen many Neurologist is the diagnosis process and since.

I now realize I have been and activist for three years which is how long I have been officially diagnosed. My chapter contacted me when I wrote a letter to the editor and mentioned I had MS. I had no experience. I do not need a political view because that is not what it is about. All I do is tell my story.

What I have gained from it is a strength. When I was diagnosed I felt hopeless and useless and wanted to hide. Being involved forces me to get back in the game and not stay on the side lines of life. Plus I have made so many new friends.

Alex

[johnniebear]

Sending a big pat on the back for all of your efforts.

Sorry to hear about your pet,  they become such a part of the family.



thanks
JB

[Lulu54]

Alex, you make an excellent spokesperson for all of us.  Thanks for doing your part!

[HVAC]

I rested for a day and then went out to the barn to ride Clara. We have a new horse named Tiny who is over six feet tall at the shoulder. I guess I am insane because I hope to one day ride him. Getting off will be interesting. I have to jump off the horse and Clara is short for a horse.

I realized how scared I was to do anything after my diagnosis on my trip. Since then I have traveled to D.C. three times by myself. I even drove in the mixing bowl during rush hour. I started riding. I even started talking to important people like I have clue what I am talking about.

My lesson is if you can keep going. I know everyone can't. I saw people with every degree of MS disability this week and it amazed me. People spoke who had lost everything financially but are still plugging away. Fear is my biggest enemy. So I am going to look at that Ginormaous horse and say "May be I will ride you some day".

Thanks to all on the forum. You are all advocates by being here for each other.

Alex

[debgen]

Thank you Alex! You are truly inspiring!
Deb

[Sidesteps]

Alex, you are an inspiration. Thank you.

[Dagun]

Wow, you have been realy busy up there! You should have a talk with your sister in law. I hope you´re taking it easy now, it must have taken a toll on you. It must have been a very funny sight, seeing an 80 year old lady offering to help you, so cute imagining that ;).

My best,
Dagun

[HVAC]

  I went up early to visit my brother. I visited three Smithsonian Art Museums in one day the African Art, The Sacklaar, Eastern art, and the Freer ( lots of James McNeill Whistler's work including the Peacock room which was a room designed for someone's home). My sister in law wanted to do the National Gallery as well but I said no.

Funny about my sister in law she would run down escalators and jump on trains with the doors closing. It did not seem to concern her that I had a hard time seeing and running no matter how many times I bring it up. When I do not have Polly my husband holds my hand in crowds. I hate the escalator at Dupont Circle, with vertigo it is a nightmare. My brother had to throw his hand across me a couple of times to keep me from being run over.

I actually did better this year compared to 2010 and 2011. I guess it is the control of my diaphragm spasms. I had one but it was okay with the Zanaflex. It is odd I have them after I have been running around and am relaxing. I paced myself a bit better. Plus I have been in training walking and riding.

I came in on the train and lugged my luggage all over metro, buses etc. to my brothers  in Bethesda and then to the hotel via the airport shuttle. I got the metro from the train with an 80 year old lady from my area who wanted to help me carry things!  Lol. She had never used the metro and was going to the same stop. I set us up with metro tickets and led the way. She also did not have a cell phone. Even though we had just met a baggage claim we figured out we had mutual friends and she advised me I could use the library for the blind books on recording(that is what she use to do). Small world.

Alex

[Guitar_grrrl]

Oh, YAAAYY, Alex!!  I'm so glad you went.  You're a shining light in our community, for sure!  Keep up the good work.

[JaneK1975]

Alex! Thank you for your hard work. You are making the world a better place for all of us. I really appreciate it.

Please continue sharing what you learn and let us know when opportunities for more of us to get involved arise.

Thanks again,
Jane

[Dagun]

Alex, that is so great :). Both that you can educate peoble so they will be more aware of MS and what it does, and that you gain so much confidence and strength from this.

Did you stay extra day to look around you? I will maby go to DC in September, so much looking forward to that :).

My best,
Dagun