Wednesday, June 04, 2008

Recent News Article

I must say that since the article recently written by Lauran Neergaard of the Association Press on Early Stage Alzheimer's has been released, the traffic on this website has increased significantly. I hope that those of you that are looking at this and are seeking more help about Alzheimer's will go one step further and contact the Alzheimer's Association if you need more information.

After my initial diagnosis the first place I went to was my local Alzheimer's Association and asked for the help. I basically said, "I'm 46, have Alzheiemer's --what am I suppose to do". And, although they can't offer a cure, they have certainly been with me every step of my journey since finding out I had this disease.

Many of us are writing about our experiences since being diagnosed. Some days it is harder than others to put into words what we are feeling and experiencing. So, there are some days you will read this and not see anything about Alzheimer's. I can't dwell on it all the time, and the reason for this blog is more to let my friends and family in on what I'm going through when it is appropriate to do so. Early on in my diagnosis they would ask me "How are you feeling?" and I would just say "fine" instead of going on in detail how difficult some things had been for me. Through this, though, as things happen I can share the experience of living with Alzheimer's. It's not always fun sharing, but sometimes it can be funny. It's easier to laugh at myself when I do stupid things, than to admit how stupid I feel when I do things! I don't always get it in the right words, but I try, and that, in essence what this blog is all about.

Thanks to Lauran for writing the article and hope that it helps start more of a dialogue about early stage Alzheimer's.


Bill Carey said...

I found your blog after reading the news article. Thank you for what you do. My name is Bill, I am 50, and was diagnosed with Alzheimer's when I was 45. I am the second person in my family diagnosed with early onset, and the third family member to be diagnosed with Alzheimer's in the past decade.

Like you, I am still fairly independent, but also "freeze" when it comes to simple arithmetic. I eat out with friends weekly, and the part I dread is calculating the tip, something I used to be able to do for others, and now can't do for myself. Even a calculator doesn't help, as I forget how to use it.

I am grateful to our local Alzheimer's Association (Greater Michigan Chapter), but especially to people like you, who speak out for those of us who have the disease, but don't fit the stereotype of elderly, non-verbal, etc.

Another Friend said...

Has anyone had experience with a doctor soft-pedialing or delaying a EOAD diagnosis?

The Alz guru at SW Med Alz Center in Dallas, after reviewing a large battery workup order by my neurologist, felt that my situation was not Alz, would get some worse, but not much worse. He said it is related to the damage done to my brain by decades of manic depression.

But I am getting worse---forgetting if I slept, when I last ate (and then coming up with something I ate yesterday in stead of today when asked if I'd eaten, etc.) I make food and forget to eat it, stuck my thumb in a pan of hot grease to help turn a pancake--just upsetting things.

I can't stand disorder in groups of people, including my own children and grandchildren---the noise and confusion are very upsetting. After standing it for a few hours, I just must go to my bedroom and close the door, being unable to remain awake any longer. My actions are interpreted as anti-social and "inhospitable."

The time that I can work at my hobby (genealogy) gets shorter each week---I used to work in the morning, take a nap, and then work again in the evening. I can only work in the morning now, and I am nodding off earlier and earlier during that morning work session.

And I seem to obsess on my current project---I don't *know how* to end it.

Does any of this seem familiar?

Bill Carey said...

Like "another friend," I had trouble getting doctors to take me seriously. My family doctor, because of my age, refused to believe it could be anything serious. I insisted on a referral to a neurologist. After much testing, the neurologist confirmed EOAD. But then, he decided he wanted me to see a local specialist. The person he sent me to is treated like royalty among local neurologists. This doctor kept me waiting for hours, then spent 15 minutes talking to me, ignored all the test results, and said I had ADD, not EOAD. Of course, ADD doesn't just materialize in adulthood... I didn't have it as a child. So this great specialist, in my book, is a quack. Bottom line: finding doctors who will listen and consider a diagnosis of EOAD can be difficult.

Your description definitely sounds like dementia, and possibly EOAD. I would have another neurologist either review the test results, or repeat them. Did you have a lumbar puncture (spinal tap)? This test can be helpful in diagnosis... in my case it did indicate EOAD.

Paige Williams said...

I found your blog last week and I want to thank you for helping me understand better what my mom is going through. I get really frustrated with her at times but this is helping me understand the disease and how it is affecting her. My Grandmother died 5 years ago with the disease and my mom has been in denial until about a year ago. She is now on aricept. She lives in Illinois and I live in Atlanta so I don't see her often enough to know if it is working. Thanks again for blogging and I will pray for you and your family.

sleepjunky said...

I just stumbled upon your blog and look forward to poking my way through it. Thank you so much for sharing your perspective. I wish you the best.

Alexandra Brown