Link to Susan Suchan’s speech at 2014 Tulsa, Oklahoma Alzheimer’s Walk: https://www.youtube.com/watch?v=CQSXM5JHBlU . Transcript below:
It is wonderful to see you all here today, thank you. I want to tell you a little bit about my personal story.
About eight years ago I lost my sense of smell. I nearly burned my house down because I forgot there was something on stove and I could no smell fire. This was an issue so I went to my doctor and he ran me thru a gamut of tests, hoping actually for a synovial tumor. There was no tumor. Who wishes for a tumor, right? But there was no tumor which led me to a neurologist where I was told (after more testing) I had early onset Alzheimer’s. He told me to go home and live my life. There was nothing they could do.
… And that is what I did. I spoke of it to very few. I followed directions very well; I just lived life.
About two years ago I started having trouble with being lost in familiar places, and behavior that was very unlike myself. People around me thought I was going thru a mid-life crisis or menopause. I had no notion other than my life felt very different and chaotic.
When things became more physical I chose to go back to my doctor thinking hormones, cholesterol meds, … “What can we do?” “Where is the magic pill to fix these changes happening me?” After trial and error I ended up back at the neurologist who sent me to a neuropsychologist for a battery of tests. Very interesting but very very exhausting tests that gave diagnosis FTD (or frontal-temporal dementia).
I was told to go home and get my affairs in order — there is no cure. Being pro-active and independent, that is exactly what I did. Zip-zap, I had it all done, and then it dawned on me … What next; wait to die? No! There is diagnosis (and there ultimately is death) but there is LIFE in between diagnosis and death!
I challenge all of you to LIVE life! Grab it! Don’t let go of it because nobody knows what tomorrow brings.
I am 56 years young and I am living well with dementia. That’s because I have … Look at these people here today; that is just a small picture of what keeps me going. Thank you. Thank you so much.
I would like to say, for those of you who have a loved one, or who are newly diagnosed, things that have worked for me (try it!):
- Routine … routine … routine! Whatever that be for you, don’t stop your routine.
- Stay physical; take a walk. Swim.
- Stay social. There are people out there who care. And things may change; just tweak it for you. Alzheimer’s has a wonderful website for caregivers and patients alike. There is also a wonderful new website, Dementia Mentors, where you can Zoom and talk one-on-one with people who are experiencing the same path as you are going on.
These are resources. Don’t sit down. Don’t sit down and stop living.
I would like, in closing, to thank each and every one of you for coming here today and participating/donating. Whether it is for someone you have loved, someone you care for, or just finding an end to this insidious disease and all dementias.
I am going to continue to use MY voice for all of us. I will no sit down chair and be over.
Live on everybody. Peace!
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