A Trip to New York with MSA

A Trip to New York with MSA
Frank And Susan Cervone

Hello!  I am glad to be writing again this week.  Last time we spoke, I was taking some time off to go to visit our daughter and her family for Thanksgiving.  Well, as my life seems to go, the days leading up to us leaving did not go smoothly.

 

I woke one morning just as any other and could tell it was going to be a rough day.  Couldn’t really get my thoughts together and felt out of control.  When these events happen, I don’t always make great choices, thus the need for 24 hour care.  These events are not only medically incapacitating, they also wreck havoc emotionally and mentally.

 

After a few calls to people for I have no reason why, I apparently decided to take an unscheduled walk down a very busy thoroughfare.  I have absolutely very little recollection of any of the events of this particular morning.  Apparently I had called Susan at work and she could tell that I was going into a crisis.  She immediately phoned Angelina who had just left for school to have her return home to check on me, but by that time, I had already started my “walk”.  Angelina caught up with me near a restaurant that I was heading into.  Well, from what they tell me, I was stumbling and staggering so badly across their parking lot that they had called 911 before Angelina was able to get me into the building.  The ambulance arrived and was transporting me to the hospital when Angelina called her mother to update her on the situation.  Angelina says that Susan just kept asking her why the ambulance was running code.  She had no idea what her mother was asking.  She says finally her mother instructed to her repeat after her…..why are you running code?  Of course the paramedic knew exactly what Susan was asking and replied, because your father is unresponsive.

 

Well, I won’t bore you with all the details, but I did spent two days in ICU due to the MSA and the symptoms involved.  But as with every time before, I bounced back and was ready to move on with life.

 

Part of the reason for my visit toNew Yorkfor Thanksgiving was to make my rounds, maybe for the last time to visit my family members that have passed before me.  I know that sounds gory, but that has always been very important to me.  Every single time I go home, I make it a point to go to the cemeteries and pay my respects.  Our family has a tradition of laying stones on the top of the grave markers to let others know that someone had been there.  This time was no different.

 

Our first stop was to visit my Aunt Rose and Uncle Attillo and my cousin George.  My uncle died many years ago.  I don’t know what his official cause of death was, I don’t think anyone knows.  I do remember at one time we were all sitting at the table and he started slurring his words and passed out, much like I do.  I know there have been a lot of people that have told me that their loved ones died from an unknown cause, but their actions and symptoms are very similar to mine.  Aunt Rose just passed away in 2007 due to an automobile accident.  She had been on her way to the department store to buy a baby shower present and was hit by someone who ran a red light.  Two years later, her son, George passed away from a very short bout with cancer.  Although I miss Aunt Rose tremendously, I am so glad that she passed before her son.  It would have been so heartbreaking for her to have gone through that.

 

Next was a stop at my grandparents’ site.  My grandfather passed when I was one, but my grandmother was with us until 1977.  She was a very no nonsense lady that loved cooking, and spoke very little English.  Well, she could speak English, she just chose not too, especially around my mother since my mother didn’t understand Italian.

 

The last stop of today was my brother Robert.  Robert died on July 4, 1970 at the age of 10 after being struck by a hit and run driver.  They never caught the guy.  We had walked to the Carvel Store for ice cream and were crossing the street when two cars that were drag racing headed toward us.  Robert pushed me out of the way and took full impact.  He was drug under the car for over 200 feet.  The driver stopped, got out of the car, looked at what he had done, got back in his car and drove away.

 

As I visited each of these graves, I started to worry about who would come visit them after I am gone?  My aunt, uncle and cousin still have my cousin Tina to visit them.  I most worry about my grandparents and brother.  Aunt Rose was the one that always visited the graves, and since she is gone, I don’t think anyone else goes there.  I mentioned this to Susan and she assured me that she will continue my pilgrimage until Angelina becomes old enough to understand the meaning.  I hope Angelina does inherit the respect I have for this.  I have seen with the younger generation the lack of sense of family.  Not that they are disrespectful, they just don’t have a grip on the concept of where they came from.  I strongly believe that these are your roots, and unless you can bond to them, you can’t have a stable life.

 

It was wonderful to spend time with our daughter and her family.  Our grandkids, James and Cassidy were excited to see Grandma and Grandpa.  I know James had the most expectation since he is six and has a more ongoing communication with us through the webcam, but Cassie seemed to be the most excited.  James and I have a bond of playing Wii and we have the “guy” thing relationship.  One of my goals this trip was to win Cassie over.  She is just 3, and hasn’t seen me since last Christmas and seems like all she wanted to do then was stare at me from across the room, not really sure about me at all.  I guess I have that effect on all women.  Of course they both get excited when we talk on the web cam, and James will tell us about his day or his karate or what level he’s reached in a particular DS game.  Cass on the other hand would just smile and say, “that’s Gran’pa.”   I think I have won her over now too.

 

Thanksgiving dinner was excellent.  I made my favorite turkey in a bag and Jessica made her delicious sausage stuffing, potatoes and carrots.  She also made pumpkin pie.  I have to admit, I’m not a big pumpkin pie eater, but it was awesome.  No real leftovers to speak of and we all pitched in to clean up the mess so the girls, (Jess and Angelina) could plan out their midnight Black Friday shopping extravaganza.

 

We had originally planned to return home on Saturday, but I was getting pretty worn out and had had a couple of times that I had to sit down quickly in the floor so we had started thinking that maybe we should leave a little earlier.  I thought that would also give Susan a little more time to rest before returning to work the following Monday.  I also didn’t want my MSA symptoms to become more prominent and have an episode that would frighten the children.  So, after Jess and Angelina’s one last trip to the mall, we got on the road a little after noon to head back toOhio.  Little did I know that the “slight dizziness” Susan kept mentioning was about to become a major problem.

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11 Responses to "A Trip to New York with MSA"

  1. Frank,
    I’m so glad you had a fantastic trip to New York. It’s always good to go home again. We always look forward to each chapter of your journey with MSA. I wish I had your courageand strength. You never cease to amaze us with your outlook on life. Keep looking up and know you, Susan and family are in our prayers daily

    Reply
    1. Bob and Kay,

      Thanks again for the words of support. I know I can always count on you.

      Sorry I didn’t get to see you the other day when Susan ran into you at Krogers.

      Frank

      Reply
  2. Frank, I read each and every post. I am hoping to see one about how you’ve found something to make you better (to cure you!). Like I’ve written about in the past, my girlfriend of 45 years (we grew up together) has MSA. I’m so worried about her and her kids. Her husband doesn’t seem to be accepting what is going on with her. How does Susan accept this? My next step is to document some of the things they need to do to help her. Hospice, lawyers, etc. Do you happen to have some sort of general list of things to talk to the dr. about? You and your family are in my prayers.
    Thanks

    Reply
  3. Frank, I thought my husband and I were the only people who never did anything nice and easy (except Tina Turner, of course). It sounds like you might be part of that club, too. We’re so thankful that God gave you the energy and strength to be able to make the trip to New York and spend time with your family.
    Your last sentence was a cliff hanger. I hope all is well with Susan. We’re praying for you and your family. ~Janet

    Reply
    1. Janet,

      It has been a terrifying couple of weeks. The new blog should be out this weekend.

      I am thankful for everyday that I wake up and can consider myself a MSA survivor.

      Thanks for following along.

      Frank

      Reply
  4. Hello Frank, Susan & Angelina,

    I’m so glad that you got to go to New York for Thanksgiving. You all are amazing! I agree with Janet, that last sentence was a cliffhanger. I hope you are okay. I love you guys! Hope to see you on Sunday. You too Angelina.

    Reply
  5. I’m glad my dad got to take this trip and make his rounds. It seems worded odd to me, but I do have respect for visiting family members, even if I never knew them, even after they have passed. And I will certainly be visiting my dad as often as possible.<3

    Reply
    1. Angelina,

      I agree I had some trouble wording that phrase. You have always been right by my side when we visited the graves and appropriately showed you respect. I am sure you and Mom will continue to carry this out for me.

      You won’t have to worry about visiting me, remember, I am going to be barbequed and will always be right there for you!….lol

      Daddy

      Reply
    1. Hello Bob,

      Hope things are going well for you and Susan. I want to wish you a very Merry Christmas and may the New Year find a cure for us!

      Frank

      Reply

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