Moments With Debbie

Welcome to Moments with Debbie!

It seems that one of the most popular pages on my web-site Focus on ALS is the My Story page, so I decided to follow the internet trend and start a blog to share some of my thoughts about life with ALS and life in general. I think that many people are curious as to why I am living so long with this disease, maybe that is why the My Story page is viewed so often, so I will try to share some of my every day life and my thoughts on this. I invite you and encourage you to add your comments about my blog postings. It is a way to add your point of view, ask a question, or start a discussion.

I titled this "Moments with Debbie" simply because I hope to add just small entries once a week or so and not long political ramblings. Please check back often and feel free to e-mail me with any questions or comments or even a topic idea for this blog.

If you have an ALS related blog that you would like to share please e-mail me and I will add you to the blog links to the right. I know that there are alot of ALS blogs out there but I will not link to any without the owner's request or permission.

I do hope that you find this new addition to my website both useful and informative and that you come back often.......................Debbie

"Being optimistic and finding inspiration and happiness in the small simple pleasures of life"___Debbie Tope

Debbie on 04.18.07 @ 10:48 AM EST [link]

Monday, January 26th

Have you got your tickets yet?

The ALS March of Faces is having its 2009 Benefit Drawing which we are calling PARADISE IN NAPLES VACATION.

BUY YOUR TICKETS NOW! DEADLINE IS FEBRUARY 6, 2022
Tickets are $10 suggested donation each or 3 for $25. Prior to FEBRUARY 6, 2022 tickets may be purchased by mail with the order form below. The deadline for online and phone orders (toll free 1-877-884-4798) has been extended to February 13, 2009. Ticket donations are not tax deductible. Make checks payable to ALS March of Faces. No purchase or contribution is necessary.

DRAWING: One Grand Prize winner; One Second Prize winner and Door Prize winners will be selected.

The Grand Prize winner will receive:
* One week accommodations for up to 6 individuals at Royal Wood Golf & Country Club, Naples, Florida. (Available April 1, 2022 – November 30, 2021)
* $400 MasterCard Gift Card for travel expenses (presented upon arrival in Naples, FL)
* One-week Rental Car
* Welcome Basket
* And much more!

The Second Prize winner will receive:
* One week accommodations for up to 6 individuals at Royal Wood Golf & Country Club, Naples, Florida. (Available April 1, 2022 – November 30, 2021)
* $100 MasterCard Gift Card for travel expenses (presented upon arrival in Naples , FL )
* Welcome Basket
* And much more!

HOW TO ENTER

ALS March of Faces, 2316 Pine Ridge Road #391, Naples, FL 34109
www.march-of-faces.org
info@march-of-faces.org
Phone: toll-free (877)884-4798
Purchase: On line Store

100% of the proceeds will go to the ALS March of Faces in performing its Mission and programs that promote public awareness of Amyotrophic Lateral Sclerosis. Thanks Everyone.......Debbie

Debbie on 01.26.09 @ 11:23 AM EST [link] [Post a Comment]

Thursday, November 20th

Warning!

Hi Everyone,
I thought that it had been too long since my last post and that I should let you know how I am doing. I am finally starting to feel better and getting back to doing my normal activities. I believe that trying Lithium caused a big set-back in my health. I wrote about my experience with Lithium a couple of postings back if you want some background. I don't know if any PALS is getting any benefit from Lithium but if you are a PALS or know a PALS who is about to try the drug, I would warn you/them to be very cautious and to do it under close observation by a caregiver and doctor. I am definitely not suggesting that anyone discontinue the drug but I believe that we need to wait and see what the trials find before we get too excited by Lithium. I do believe that we PALS need to do all we can to fight this disease which includes drugs like Lithium but I just wanted to warn that this drug fought back. I'll be back soon with what I hope are some more positive postings........Debbie

Debbie on 11.20.08 @ 02:41 AM EST [link]

Wednesday, August 27th

2008 Walk to Defeat ALS Columbus

Tope's Hope

Hi Everyone,
This will be the seventh year that we will be participating in the ALSA Walk to Defeat ALS. I encourage those that would like to participate either by walking or a donation to my team to visit the Tope's Hope Walk Site at Tope's Hope

The details:
Schedule: Registration: 10:00 am ~ Walk: 11:00 am

Date: Sunday, September 28, 2022

Location: Fred Beekman Park -- OSU Campus Columbus,OH

It is a fun and very worth-while event......Debbie

Tope'sHope2007

Debbie on 08.27.08 @ 01:23 PM EST [link] [1 Comment]

Tuesday, August 26th

ALS March of Faces

I am proud to announce that I have been elected a Trustee (Communications) on the ALS March of Faces board. I am humbled and honored to be a part of this great organization. The ALS March of Faces is a non-profit organization that advocates for PALS using the faces of those affected by the disease on banners that are displayed on the web and at events. I met PALS and founder Kyle Hahn and his fiancée Terry Frank in 2000 at the "The Grape Event" held at the Medallion Club by The ALS Association Central and Southern Ohio Chapter in Columbus.

Kyle and Terry founded the ALS March of Faces. This is their mission: "The Banner marches on still today but no longer includes the magic of Kyle's insight and vision. For ALS patients the message of the Banner is the same and the history is too valuable to ever forget. Through the years March of Faces has scaled back but the power and magic of the Banner is here to stay. Kyle was overtaken by ALS in 2003, he never surrendered, never gave up and his passing is a triumphant memorial of his courage and wisdom for all of us to follow. ALS March of Faces is an organization for PALS, controlled by PALS". ~Terry Frank ~ 2003

If you would like to learn more about this wonderful organization you can visit their website at www.march-of-faces.org .................Debbie

Debbie on 08.26.08 @ 11:35 AM EST [link] [Post a Comment]

Saturday, August 2nd

My Experience with Lithium

Hi everyone! I know that it has been a very long time since my last posting and I even thought about discontinuing this blog but decided against it. I have still been working on this web-site but find it difficult to concetrate on any task for long. I am feeling somewhat better now and do hope to continue updating and modifying my web-site more often including this blog. I feel bad that I have fallen behind in responding to e-mails as well but am working on catching up.
I have been and still am fighting the mother of all sinus infections. I have had sinus trouble before but this is especially bad. I am on round two of antibiotics and am still not completely kicking it yet. I think my concentration would improve if I could get rid of this. Another thing on top of this was my attempt at taking Lithium. As you may know, many PALS are now taking Lithium to slow down the progression of the disease which is in response to a study done in Italy showing remarkable results. Unfortunately, many PALS alll over the world started taking Lithium but many are not showing positive results. There is going to be a big US study with the drug but because of my advanced disease involvement, I would not qualify for the study but my doctor offered to prescribe the drug for me. I debated but finally decided to take it. BIG MISTAKE. I now think "What was I thinking?". I am already slow progressing so why would I want to mess that up? Well I may have. Every day I was on Lithium, I was getting weaker and my mental state was not good. I developed a terrible thirst which means more bathroom trips and that was not good because my weakness was making transfers very shakey. By the time I was on the full dose of the drug (about 6 days), my weakness was getting extreme. I estimate that at my current rate of progression I had lost more strength than the last two years or more of the disease. When it started affecting my breathing, I said that was enough and quit taking it. I did start regaining my little bit of strength about three days after quitting it. Chris(my husband) said that my overall mood(?) started improving after that too. I don't think that my strength has completely returned yet but I have hopes that it will. I don't know if other PALS are experiencing what I did but I suspect that some are. In my opinion, the Italian Litium study is flawed in many ways. We should get better results from the larger multi-center US study.
As I said, I hope to be able to get back to all of this soon. I know that I lost my positive attitude through all of this but I do feel it coming back. More soon.............Debbie

Debbie on 08.02.08 @ 02:04 AM EST [link] [1 Comment]

Tuesday, May 13th

May is National ALS Awareness Month

May is National ALS Awareness month and it is a time to remind everyone what ALS is and how it affects not only the patient, but everyone involved with the disease. This year I was fortunate enough to participate in our ALS Awareness day at the Ohio Statehouse. It was a definite learning experience for me. We started with a breakfast and orientation and then each of us were to meet with our State Senators and Representatives but unfortunately neither of mine were available but Chris and I met with their aides. We just told them a little about ALS and some of the obstacles that we are facing. We weren't there to get any bill passed or to lobby for anything, but just to introduce ourselves and to put a face to the disease. The visits went well and we left a packet of information for them to read. After our visits, we met with the entire group again for lunch and discussion with a few Representatives. It was a good experience and I do hope to have the opportunity to do it again. There are many fellow PALS, CALS, and advocates doing the same thing in Washington DC right now. I do want to thank each of them for taking the time and sacrifice to do this important work. Maybe I will be able to do Washington next year. Even if most of us cannot be in Washington right now, anything we do can be a big help such as a letter to the paper, a speech at your club or civic group, or even a mention to your coworkers. I am asking each of you this month to make at least one other person aware of ALS. It does help.....................Debbie

Debbie on 05.13.08 @ 11:39 AM EST [link] [Post a Comment]

Monday, March 31st

EarthCam

Only a few hours left in March! Where has this month gone? Time seems to go extra fast when you spend hours of each day on the computer. I think I will enjoy April more anyway. I have three sisters and we all share April birthdays. Two of my sisters are about a 30 minute drive from us and the third, Georgia, lives in Washington State. Georgia recently visited Hawaii and while there we text messaged & e-mailed each other almost daily and for fun used some sayings in the Hawaiian language. I have never been to Hawaii so I Googled for the language and some sayings to use. While searching one day, I stumbled on to EarthCam which are webcams that they place at businesses and key locations that sounded interesting. I found one placed at a business near where Georgia was staying in Waikiki called the Tiki Grill and Bar so we set a time to "meet" and while Chris talked to her on the cell phone, he directed her to the camera to smile and wave! I was able to get a screen shot of her and her husband Chuck! That was so neat, we felt as if we were having lunch together! If I could only have been there in person, Chris and I would be slamming down Margaritas. :-) I'm going to check out EarthCam at www.earthcam.com for places in Washington State. --Debbie

Debbie on 03.31.08 @ 04:52 PM EST [link] [Post a Comment]

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