Saturday, April 28th

Spring has arrived!


I've been bird watching for several years now. I just saw what I first thought was a Baltimore Oriole but after checking in my bird program found it was a Striped Towhee! My first sighting this year and there were three of them! The Phoebes are back and trying to build a nest on the downspout. They are fun to watch but very messy. Chris placed a small stuffed toy "Taz" at the area they built their nest last year to discourage them from nesting.The Hummingbirds should be back soon. I love to watch them little hummers especially when they fight each other.
I love hearing the birds singing. Karleen, my mother-in-law, says the Cardinals sound like they are saying "cheese burger, cheese burger, cheese burger" and after listening a few minutes they do!. I think a lot of PALS have taken up Bird Watching or if they haven't, they should try it. It is very relaxing.

It is now the sixth day that my upper left arm has been spasming. It feels like I've been hit but no bruise to show it! My body is losing muscle mass very quickly. My hands are thin and my fingers curl except my two index and thumbs which are positioned to hold my computer mouse, which if they slide ever so slightly, I lose control of it. With my arm jumping around it's been challenging to use my on-screen keyboard in which I use the "hover" feature to type. With ALS, you deal with losses as they come and try to adapt but the loss of my arms and hands to control the computer would be a heartbreaking loss......Debbie

"Luck and blessings combined, provide me with all the comforts and blessings I have today."___Debbie Tope

Debbie on 04.28.07 @ 10:56 AM EST [link]


Thursday, April 19th

Longevity (Part 1 of many)


As I have said in my introduction to this blog, I am going to look at why I am living so long with ALS. The "textbooks" say that the average life after an ALS diagnosis is 2 to 5 years so why am I still here 12 years after my diagnosis (13 years after symptoms started) and without a ventilator. When my symptoms first started, I was progressing downward at an alarming rate. When I first got the ALS diagnosis, I thought that I would be fortunate to survive within the low end of the 2 to 5 years but it seems like once I got settled in with the knowledge of my fate and got into a comfortable routine with my caregiver Chris, the progression of the disease almost came to a stop. As a matter of fact, the doctor and staff at my ALS Clinic were even astounded that I was showing signs of improvement. To this day, even though my decline is slow, I still show slight improvement in some areas between visits. Stress seems to be my enemy. If I am under stress of any kind, that is when I get very tired and the progression accelerates again. So we try to stay in our comfortable daily routine which seems to be working for me.......That's all for now........Debbie

"As long as my mind holds its strength, with God's blessing I shall somehow survive."___Debbie Tope
Debbie on 04.19.07 @ 01:42 PM EST [link]


Wednesday, April 18th

Happy Birthday to Me


Yes-Yesterday was my birthday. I won't mention my age but when I was first diagnosed with ALS, I never thought I would reach this age. I had a very nice day. The weather here in Ohio was beautiful for a pleasant change. I had many well-wishing phone calls, many pretty cards, visits from family, two of my sisters sent me flowers, and I received many other nice gifts. Chris made me one of my favorite meals and even baked me a cake. I ate as much as I could but certainly wanted more. He saved me some so I will try again today. Everything was nice and I am wore out but that is my usual lately. I seem to even wake up in the morning wore out but I am thankful for what I still have and how long I've had it. I had a great birthday and am so thankful for the family and friends I have who shared it with me!.........Debbie

Pictures! This is my grandaughter Hayley, she is celebrating her first birthday a day early.
hayley04172007 (47k image)

Flowers from my sisters. Thank you, Thank you! They are beautiful!

041707g (64k image)

041707_s (44k image)
Debbie on 04.18.07 @ 11:20 AM EST [link]


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 Tope 2007
Debbie on 04.18.07 @ 10:48 AM EST [link]


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