Look a Little Closer

      I know my Blog is looking at the past year and how MSA has affected me, but March is MSA awareness month so I thought we should acknowledge that. I want to raise awareness but at the same time, I want people to know I am the same person on the inside who still desires the same things as when I was healthy.

     I should warn you now that this is not going to be pretty. We all know that it has been 1.5 years since my diagnosis and I have managed to see a silver lining in most things but it is not without a price...

     Now, I have to practice the things I have been doing all my life, like walking and talking. At the time of diagnosis, I had just finished a marathon, now, I shuffle with my walker, not what you expect to see a 48 year old doing.

I was also an athlete, now, I cannot climb on any of the exercise equipment, except the incumbent bike, which is becoming difficult as well.

    I wrote and told you all how it felt becoming a mermaid, sadly, I have had to stop this.  It is too hard to get in and out the pool and sometimes my legs stop kicking without warning.

     Usually, I look forward to seeing the new shoes and fashion but, I get cramps in my feet and calves when putting shoes or pants on, so this is no longer fun.

  

     At the end of the day my body is very tired so my Hunny has to escort my walker and me to bed. I can no longer roll over in bed and have a bed rail.  My hips get sore from lying on the same side, therefore, if I want to change sides this has to be done in stages.

     In my shower, I have bars and a chair to sit on. Just last week I fell off toilet and my legs would not work to get me up. My Knight in Shining Armor was there again and got me back on my feet.  It is getting very hard to wash my hair and Hunny usually has to help me get off my sweater, because I have fallen on that left shoulder so many times that it is sore to move. I usually fall daily but, at least I know the nine foot windows will support me as I got to test this last week. Because of these falls, I now have a Lifeline.

     We don’t really go to restaurants any more because the food is to hard for me to cut and getting to bathroom is a challenge, but Hunny buys me the best steak and cooks it just right so I don’t have to fight with it and I can even have a glass of red wine because I know that Hunny will take care of me. Hunny also makes the best pizza and cuts it into manageable strips for me.

     I can't brush my teeth like I used to so, I got an electric toothbrush. I no longer write so my husband has to do this, as well as the household chores, as I fall more often now.

But…….

      Even though there are lots of not so good things there are great things as well. I have a great relationship with my husband that I know I can count on. We are Soul Mates!
  And I have amazing kids who will be there with me through it all.

     I have conversations daily with family who are just a phone call away and close friends who I can rely on. I am never left alone unless that is what I want.

I have met some great people through Mermaids and in my building. I met two women who know two of us who have MSA. Hard to believe something so rare can impact a ones’s life personally twice-in one lifetime.

      I  started this, my own Blog, which has had over 8,000 views since September. I was hoping to get 1,000 people.

     I have been named an Ambassador for MSA, for bringing awareness to this disease, which is a great honor. 

 "For her efforts in educating others about Multiple System Atrophy through her blog "One Day at a Time - Brenda's Journey with MSA" http://msaonedayatatime.blogspot.com/ I hearby nominate Brenda Paquet as an “MSA Awareness Ambassador”. Brenda, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!"

     ... And I was quoted in a MSA Awareness press release. 

     

     We brought Tim’s Shoe to see our Mayor, Jim Watson. My friend, my husband and I also got Jim Watson to Proclaim March as MSA month.  

     Recently I was asked by a group called Tread Lightly Company (TLC) to become a partner, which I gladly accepted. This is her introduction:


"COURAGE IS CONTAGIOUS

Recently I have had the good fortune to be in touch with one of your newest Ambassadors, an impressive woman by the name of Brenda Paquet.  Brenda lives in Ottawa, Canada.  She is the Featured Partner this month in our Tread Lightly Company (TLC) Bulletin, TLC being a private support system for a few dozen friends who are scattered across our country.  Brenda is being a fine Ambassador for MSA during the Multiple System Atrophy Awareness month; moreover, as she spreads the word about MSA she has also managed to share her courage with others who are dealing with a variety of health issues.  We’ve all learned so much that we did not know before about this challenging condition. We wish to applaud Brenda’s successful efforts. As evidenced by the two MSA patients we know personally, there’s certainly nothing wrong with the intelligence or amazing courageous spirit of either one!

A Tribute to Brenda Paquet

respectfully submitted by

Nancy Freeman"

     I have joined many support groups online, met some wonderful strong people and through all this I have learned a valuable lesson, there are lots of good people in our lives and positive events.

     In our difficult lives, it is easy to see the negative because it is right in our face and all around us and sometimes we have to look a little harder but the positive is there to.

Just keep looking we all have to look a little closer!