Live for Today

Susan Speech Aug2014LoLink 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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