Ask Elena

Ask Elena's Blog

In this page I offer my support and share my experience by answering any questions you might have.

These letters can help others in similar situations.

Keep in mind that I'm neither a Doctor or nurse, my experience is from life experience of 21 years diagnosed with Parkinson´s disease.

These are only suggestions, consult and follow your doctor's advise!

Write to me here

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Hello Elena,

Wow you seem like such a strong woman! I read your Bios on the Activa Website and saw your web link to your website and was inspired! You were faced with many challenges in life and I guess the saying what doesn't kill you only makes you stronger can definitely apply to you!!!! You should be very proud to have 3 beautiful supportive daughters and a wonderful mother.

I'm writing you because my father is a PD patient and was diagnosed with this horrible disease at 45 yrs old he's 56 this year and still trying to battle it but is seriously considering Activa. I thought I'd write you and ask how these last 2 yrs have been and if your feeling any symptoms come back?

Any info would be greatly appreciated. Thank you again and God bless you and your family

Sincerely

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Julie

Thanks so much for visiting my site and for your kind words.

I feel there is no need to tolerate p.d if you can avoid it. I waited 17 years but if I was offered to have it 10 years ago, I would had done it. I'm on the 2nd year of dbs and to be honest with you, I feel I am only getting better, sometimes I have to remind myself I am 46 although i have and feel I am 25 years old.

I love riding my bike, i work out, i run, i dance and i am able to write to you thanks to this dbs surgery.

I am not cure, but I sure feel healthy again ....and my last discovery ..I can swim!

yours truly,

Elena Tuero

-------- Original Message --------

-------- Original Message --------
Subject: Brother and Parkinson
o: info@elenatuero.com

MMy brother has had Parkinson's for many years with also having
diabetes. Recently he had open heart surgery to fix the major aota
valve. Two weeks before the surgery his wife told him she wanted a
divorce. She was both ashamed of him and tired of dealing with his
illness. He has a four year old and is so depressed. I started to
learn as much as I can about Parkinson's. THe doctors in Florida are
doing so much research that I have been luckey to have been given so
much knowledge in so short a time. He is in MA and having a hard time
going into Boston for check ups. I feel so sorry for him. All of his
family are in Florida but he does not want to leave his daughter. His
wife does not want him to have long visitations becuase of his illness.
I was so glad to read your story. I have been keeping him informed
about the operation that is available. He is tired of fighting however.
Thank you so much for your article. I moved to a one story house in
hopes he will come here. He at least has agreed to come for
Thanksgiving. It is a start.

*********

Thank you for your time. I too feel that they are amking stide. So
much is going on in Florida. I have attended many of the workshops. I
wish my brother was here but he still is in MA. He has not been able to
sell his house. I am so worried about him trying to drive. How did you
get around. He also has diabetic eyes and is legally blind.

********

info@elenatuero.com wrote:
> I am so sorry for what your brother is going through, I couldn't save my
> marriage because i could not be a mother, a wife, a partner and freeing
> him from my life was the best thing for me, in exchanged I acquired more
> time to dedicate to my children and had time for me, and sex was lost at
> the same time i was loosing my battle with Parkinson. May be for the
> best of him, but tell him that there is hope, and soon there will be a
> cure for p.d.
>
> yours truly,

If he is legally blind, then, legally he can't drive. I hope that you help him get to you safe.

I stop / quit driving 12 years ago voluntarily. I could not put my children in any danger..I still don't drive not because I can't, i just can't afford buying a car!

yours truly,

-------- Original Message --------
Subject: Question
From: @fibertel.com.ar>

Where have you been operated on with the DBS?

I am also interested in recovering the ability to use the left part of my body.

Please inform. I was impressed by your story and felt you underwent the same horror I am living nowadays.

Hello, I am very sorry to know that you are going through hard times with P.D. but if your doctor gives you the OK, you'll be dancing again.

I had my surgery at Robert Wood Johnson University Hospital in New Brunswick, NJ and my neurologist name is Annette Nieves, MD

I am very glad I was able to answer you questions if any more..just ask.

How did you find out about this site? can you please let me know if you are to have dbs surgery?

God Bless

dear elena,

i recently read about you in nuestra comunidad. your art work, story and
drive is an inspiration to all. i wish you the best and please add me to yr
mailing list if you have one. would love to see yr paintings in person.

venceremos!

michael lucio sternbach

I am very happy to know that you made time to write, thanks for your kind words Michael, I will let you know if one day I get to exhibit. My paintings are out of my inst incs, not learned or taught, I guess that is why it is not appreciated by the art galleries.

Y si, venceremos!

yours truly,

Hello Elena,
You and I met many years ago at your home. My mom and my dad and I came to meet you before my mom had DBS surgery and you told us of your experiences. I have Parkinsons too and the time has come for me to start thinking of getting the surgery DBS for myself. Can I come to see you again? Or can we meet at a diner for a cup of coffee soon and talk there? Please call me. Thank you so much.

Many good wishes for you.
Friaan

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Hello Friaan, I remember you being pregnant with your second child when you came to my house on the support meeting I had in my house. How is your mom? I guess we can talk when we meet I leave it up to you but I dont have a car, i depend on my daughterl, you say soon, well, I am free today and tommorrow if not let me know when and where.

It would be my great pleasure to make a water color of you and your grandchildren... all of them(when they arrive) . I'd like to come over and take a few photographs of you holding and sitting on the couch with the grandchildren (after they are born). And then I'll do watercolor from the photographs for you. I'd love to. Please tell me when the baby is born!
Friaan

From: eetuero@msn.com
To: f_hakim@hotmail.com
Subject: RE:
Date: Wed, 20 May 2009 08:41:11 -0400

Elena ,

Many thanks to you and Vanessa and much love to you both. Below is my story. Feel free to put it on your web site. Also, I am sending you my paintings!

Big hugs,
Friaan

I was diagnosed as having Parkinson's disease in November of 2001. I was 36 years old at that time. My wonderful boyfriend had just proposed to me and he also told me he suspected that I had Parkinson's. Three Neurologists confirmed it. I tried to dissuade him from marriage, but he wouldn't hear of that. 'A short time with someone wonderful is better than a lifetime with some one else.', was his refrain. We got married, I became pregnant within 3 months and we had our fantastic little girl! Five months later I got pregnant again and we had our second wonderful baby girl. These two are the light of my life. I often say to my husband, 'If I had know that having kids was this much fun, I'd have done it years ago!'.

Lot's more to tell... of a life before, but instead of a resume, here’s a paragraph. As we all have, mine too, is a life time of stories: joyous times, fun times, funny times, family times, lovely music with parents times, getting spoiled by everyone times, Mommy and Daddy are my hero’s turned into Mom and Dad are my hero’s, obstacles were overcome, unconventional roads were taken, failures turned into fantastic achievements, ladders climbed, wish list mostly accomplished, loved greatly, laughed ‘till I snorted, brain was stretched, confident, pretty, helpful, thoughtful, capable, smart, achiever. I thought that life went in one direction - straight up (at least until you were in your 80’s, right?). Parkinson's hacks away at you. When you pee in your pants in front of your husband and stand there mortified, crying, but not able to move - and that story is not infrequent or isolated, you ask, “What happened?”. I was always the helper, not the one in need. You tell yourself, I'll beat this thing. When worse happens almost weekly/ daily. Well, you can't cry all the time, so you move forward (not upward, but you tread water) you teach yourself to enjoy this moment ... ‘cause I've got these two fantastic kids and I don’t want to miss a moment with them. They smile. They laugh. I laugh through tears. They worry. I explain about 'tears of joy'. Yes, I lie, but they are 4 and 5 years old. They believe me and so we laugh. I crawl or sit down and wait until an hour passes and the meds work. Or maybe today they don’t. How long should I endure the cold floor before I make the tremendous effort to move to the living room carpet? The couch and TV are 5 yards away, but I stay on the floor shivering and singing with the girls nonsense songs that we make up. I laugh until I snort!. Can this be the same woman that had the window office 5 doors down from the CEO? Yes, it’s me. Just me, with this experience too. I crawl to get the girls their coloring books and crayons, and sippy cups. They talk and talk, I’m absorbed in them and the cold and pain are almost forgotten. I have them. I am happy. Not trying to be happy, just really, truly happy. How many people can say that? I am the luckiest person in the world because I have these two.

Friaan Hakim
Age 43

This is one of her many artworks

Organización del Mal de Parkinson

Creado voluntariamente por una victima con este mal.