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Joined: 6/29/2015
Posts: 1
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I'm Jo, and I was diagnosed with dementia in May. I'm 60, and I'm a professional writer, although I'm not sure for how long. I'm so glad to have found this place. I haven't gone a day without feeling afraid. I'm stuttering now, which is new, and I gather it's pretty normal for stress to make things a lot more difficult.
Ironically, my long-term hobby has been reading about and studying the brain. I even taught classes in how to use brain chemicals to inform characters.
I'm very lucky, though. I have a domestic partner who is also a writer, and we both write for the same publisher, so she's able to help me. I used to have no problem holding the story of an entire novel. Now, I can't even hold a chapter. So she writes out notes for my books, detailed outlines chapter by chapter. Then fixes the stuff I get wrong. This is in addition to her own work load.
I'm living in So. Utah, a very small town. I don't know what's available out here in terms of meeting other folks facing this disease, but now I'm here and I hope to be joining in and getting a lot of good advice.
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Joined: 11/29/2011
Posts: 7027
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Hi Jo, Welcome to our world. We're so glad you found us. Do keep coming back because we have so much to share with you.
In the past I gave speeches as a person with the disease. The introduction to one I made in front of my state legislature began. "Hi, I have Alzheimer's and I'm going to die. But not, today,not tomorrow and maybe not for a long, long time.
"Meanwhile, I'm living life to the fullest and having s wonderful time. ,,,"
Personally, I get tired of the Poor me routine. Yes, there are things I can't do. However, there are many things I still can do.
Since you are a writer, I'll tell you that I research rural edu action and have written several books on the subject of what happened in my county.
You have a partner who is willing to help[. so you concentrate of what you can do.
On the internet you can order: Living Your Best With Early Stage Alzheimer's by Lisa Snyder. I'd buy the book, or ask your librarian. And the two of you should read it together!
As part of your diagnosis, did you take a neuropsych. Hopefully you have a copy. If not, ask. Look at your strengths; this is what you work with. What were the worst? That's where you compensate.
Best practices are something you should be aware of. If you want ask and I'll tell you. This is enough for one post.
Do keep coming back.
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Joined: 9/12/2013
Posts: 3608
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http://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription/ Link above to Australian woman with EOAD and a great take on things. Glad you are here! I am envious that your partner helps you keep writing novels! I remember being able to hold a novel in progress in my head and how weird it was when it just was not going to happen any more. You know words are powerful. You know personal story is powerful. I hope to read lots more of your posts and thoughts about life with dementia. One of my favorite towns is Virgin Utah. Had a bookstore. Never got to go back. love and courage
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Joined: 5/20/2014
Posts: 4408
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Welcome Jo Leigh. Sorry to hear about your diagnosis. This is all so new to you and there is a lot to take in and digest. Do pace yourself and eliminate stress wherever you can. Try some relaxation techniques such as, deep breathing, counting, external focus, positive self talk and visualization when you feel yourself getting overwhelmed. It's okay to have a good cry and more okay to have a good laugh! Fun and laughter will relieve the stress also. Try to stay positive and keep your spirits up. There is hope for a meaningful existence and a full life. Be wary of the doom and gloom talkers and educate yourself and care partner about Best Practices in caring for persons with dementia. It is not all up to you to practice Best Practices (diet, exercise, socialization etc.) but also up to your support network to practice Best Practices and Person Centered Care in supporting you. Also don't limit yourself to just this board and get all the support you can. There are other online support groups if you would like more information.
Remember the diagnosis is not the end of the world and you have many happy years ahead. You have to reinvent yourself and your life around the diagnosis and not become the diagnosis!
(((((Jo Leigh)))))
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Joined: 8/9/2013
Posts: 584
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Jo LEigh, welcome to our boards. Sorry to hear about your diagnosis and the struggles you are facing. You will find lots of good advice and encouragement here on the message boards. Do try and follow the best practices. They really help. Do keep writing! It has helped me cope and encourage others. It is great therapy! Continue to join in on the posts on the boards. We'd love to hear what you have to say. God bless, Paul
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Joined: 6/20/2014
Posts: 160
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Jo,
A big hey how are you from Metro Atlanta GA.
Glad you found us. I am 50. Diagnosis at age 49.
We are a good group of souls trying to find our way. We are each unique and caring. So visit often you have found friends here.
Lisa Ramey
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Joined: 6/30/2015
Posts: 3
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Mimi S, I read your reply to Jo and I just got a copy of my neuro psych report done a year ago. Unfortunately it was never sent to my PCP so she had no idea. Thankfully I was sent to a great neuro dr and the PET scan and s/s showed alz. I find reading the report is very difficult for me to understand what are my strengths and weakness. I will take it to my neuro dr and PCP to ask them about it. Is there someone who can help me understand what are my strengths and weaknesses?. thank you
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Joined: 5/20/2014
Posts: 4408
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Serena,
On Mimi's (she can explain it better than me) advice I plotted my scores on a simple graph i.e., above average, average, below average,and mild, moderate and severe impairment. The above average, average and perhaps even some of the slightly below average range of scores would be your strengths. The lower scores would indicate your weaknesses.
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Joined: 11/29/2011
Posts: 7027
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Serena, it may not be you at all. if the scores on each sub-test are only reported as raw: Scored 50. It has absolutely no meaning. Were there 50 questions or 100 questions? You can see it makes a big difference.
See if someone can help you find that information in the report.
Next, you may have to put the name of the test in your search engine to understand what was being tested.
In my opinion, the test results should have been explained to you and your care-partner in easily understandable words.
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Joined: 5/20/2014
Posts: 4408
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Jo Leigh,
Thinking about you!
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Joined: 5/20/2014
Posts: 4408
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Jo Leigh,
Thinking about you!
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