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

dtope2008 (14k image)
Debbie 2008

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

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. big grin --Debbie

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

Tuesday, March 11th

"Debbie Downer"

Hi everyone. I know that I have been neglecting this part of my web-site but I have been busy updating news and other parts of Focus on ALS and I have also been spending alot of time on the Patients Like Me web-site reading and updating my profile. All PALS should create a profile as it is a valuable resource.

I have been feeling awful for the past three weeks. Not only do I have another freaking sinus infection! My head hurts constantly and now I have an abscessed tooth! My dentist says I need a root canal but of course he doesn't do those and wants me to go to a specialist! I don't want to spend hundreds of dollars now! I have ALS! My luck I will die before the novacaine wears off! If I had known I was going live this long, I would have taken better care of my teeth and would have had braces. Now on top of all of that, I am certain I have rosacea! My face is red, itchy, skin on my cheeks is tight feels like a sunburn, my eyes burn and get watery. I look like a rabied chimpmunk! I will never be seen in public again! My doctor is referring me to a dermatologist. Oh great, another specialist. Maybe I will be able to get out some day to see him. We just had the biggest one-day snowfall in recent history around here. It is pretty to look at but wheelchairs don't move in it. Maybe better weather will help me feel better. Where are you SPRING?????????????Debbie

Debbie on 03.11.08 @ 02:07 AM EST [link] [1 Comment]

Tuesday, February 5th

Exciting News!

I know that it has again been a while since my last post but I have been doing well. Breathing has been more difficult which worries me but it is also surprising since I had such good breathing test results at my last pulmonary appointment and at my last ALS Clinic. I have also been battling a sinus infection
which could be affecting my breathing. So my computer time has been a little less with the extra sleep I have been getting trying to battle this plus I am still using my Quick Glance computer every night.
The other time has been used for reading alot about all the exciting new news in ALS research. I have been posting it all on my "News Center" page if you would like to read.

www.focusonals.com/newscenter.htm

The most exciting news is regarding the use of Lithium. Italian researchers are claiming to almost stop the progression of ALS by using Lithium Carbonate and now the ALS community is buzzing and
other ALS researchers from accross the world are scrambling to get a grasp on this. Many PALS are now starting Lithium since it is an already approved drug being used primarily in patients with Bi-polar
disorder. Much of the talk has been that it seems to be working very quickly and even some PALS are reporting improvements. I have not started using it yet. Since I am already progressing slowly, I will
wait to see what happens but believe me if the news continues to be good, I will not wait long. I am very gaurded as to not get my hopes up too much. I have heard good news like this before only to
later get my hopes dashed. This does feel different though. This one seems to be genuine as the researchers are excited and of course the PALS are too. Lets all hope and pray..........Debbie

Debbie on 02.05.08 @ 11:27 AM EST [link] [Post a Comment]

Friday, January 4th

Happy New Year!

I hope that each of you had a wonderful holiday season. We had a good Christmas enjoying family and all the good eats. I just wish I was able to eat more but at least I was able to sample most of it. Even though I appreciated all those that I was able to spend time with, I missed those that were not here and the loved ones that have passed on before me. It did make for an emotional Christmas but I was continually brought back to remembering the birth of Christ my Savior which would make things better.

I send out my wishes for a Happy New Year to all of you. May it be a year of prosperity, health, love, and peace. My prayers are that all world leaders strive for peace this year especially the USA and that our elections later this year will bring us a great leader. I also hope and pray that in this new year we will see a cure for ALS as well as many other diseases.

My best to all of you.............Debbie

Debbie on 01.04.08 @ 11:17 AM EST [link] [3 Comments]

Saturday, December 15th

A Beautiful Gift!

I have always enjoyed art, especially paintings. I do admire the talent of a
good artist who is able to express their feelings so well on a blank canvas. I
used to love to watch one such talented artist named Bob Ross, the
soft-spoken artist with the bushy hair on PBS. I know that he had his critics
because of his style but he made me want to paint which I did for a while but
unfortunately that was one of the first things ALS took from me. I do enjoy
working with graphics on my computer but it is not quite the same.

Now to the story. I recently had an appointment at my pulmonary doctor who
I will call Dr. R. I have been to his office numerous times and have noticed the
artwork, much of it being religious themed, hanging in different locations
throughout the office. I had also been told that Dr. R. was a painter and that
much of that artwork was painted by him. This past visit I had Chris tell the
Dr. that I admired his artwork which really seem to please him as he went on
to tell us about a piece he just finished and an idea for his next work. About a
week or so had gone by after that appointment and I was feeling very low both
physically and especially mentally. It was a cold and rainy night at about
9:30pm on a day that was especially trying for me when we heard a knock at
the door. At the door was Dr. R. which scared and surprised both Chris and I.
We live in a very remote location and don't get a lot of visitors especially at
night and especially a doctor. What kind of bad news must he be bringing? He
was carrying a tube and said that he had something for me. He then opened
the tube to show me a print of one of his paintings. It was a painting of Jesus
on the cross which was the painting hanging on the wall of the exam room that
I had been in last. All I could do was cry. I couldn't express my gratitude to
him in any way that night. It was such an act of kindness and it totally
overwhelmed me. Chris went out the next day and found the perfect frame
and hung it next to my chair. I look at this beautiful painting many times
throughout the day now and think of the generousity of Dr. R. and also the
sacrifice that my Savior made for me. I am blessed........Debbie

Debbie on 12.15.07 @ 11:42 AM EST [link] [2 Comments]

Thursday, December 6th

I'm Here!

I know that there has been some concern as to my condition the past few days since my web-site and blog seem to be down more than up lately. I'm OK and my web-site is OK. The problem has been with the company that hosts my web-site but they assured me that the problem is now fixed and everything should now run smoothly. At least the problem was not with the spammers and hackers that have been causing me so much grief lately. I have been using my new communication device alot more and am truly amazed at what it will allow me to do with my eyes. I thought that I would be severely limited as to what I can do with it but that is not the case. I am so happy with this and excited as well. I want to thank each of you that have been writing your comments on this blog. I have tried writing each of you personally but since I run my e-mail program through my web-site host, I don't know if my e-mails got out during their down times. If not, please know that I appreciate the comments, the e-mails, and well-wishes.
My next entry will be about a truly wonderful gift I received............Debbie

Debbie on 12.06.07 @ 11:34 AM EST [link] [Post a Comment]

Wednesday, November 7th

It's Here!

This week has been very busy and exciting for me. My augmentative communication device arrived late last week and I LOVE IT. Many times when getting a new piece of equipment, it just doesn't live up to your expectations, but not this, it is all I hoped for and more. This device is a Quick Glance 3 system by Eye Tech and uses the Viking Communicator 3 Pro software. The system is very versitile and can be controlled in many ways but I love the eye tracking feature which uses your eyes to control the cursor and an eye blink is the same as a mouse click. It is very easy to set up and I am finding it very easy to use. Actually I am quite surprised as I thought it would take a long time to learn. I have heard stories of how difficult some systems are to set up and learn and even how some PALS just give up trying. Not this one, it is not only easy to use but actually quite fun for me. I haven't used it enough yet to know all the features but keep finding new things daily. As I continue to lose my strength and voice, even as slowly as I am, it is comforting to know that I can still have a voice and be able to use the computer and even control my environment such as the TV and lights using this system. It is great.

Thank you again to Todd at Forbes Rehab Solutions for getting me set up with the right system and for his patience in getting it all functioning for me. I highly recommend Todd and Forbes to anyone. If anyone would want their contact imformation, just e-mail me and I would be glad to share it with you. I do believe that they only service Ohio and surrounding areas. I will share more soon and maybe even a picture of me using it.........Debbie

DEBBIE (36k image)

Debbie on 11.07.07 @ 11:32 AM EST [link] [5 Comments]

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