Yesterday – 7/11 – was Free Slurpee Day.* I was on a journey to Dr appt with my daughter, Beth.
We were silly updating my files. “Problem with erection” – we answered ‘yes’. “Premature ejaculation” we answered see “erection, no penis”. The nurse and doctor were in stitches with our banter. Time came to list symptoms, I sent her out of the room.
FTD seems to send most of us to Depends – with either loss of bladder or “other” control. I don’t know why. I just know my friends, like me, are no longer friends with our bladder or bowels. Always a let down (no pun intended).
Our children don’t want to hear about the reality of what dead brain cells do. It’s hard to find someone to listen to our concerns. Sometimes a doctor’s visit helps, but I know now when the caregiver stays (I wax wonderful) and when they leave. The truth to a professional is urgent.
Urinary Tract Infections seem to be part and parcel of FTD. I have no idea why. But I was told the disease wouldn’t kill me. It would be most likely UTI or pneumonia. A strange choice for death.
“Kill me through my bladder – no, wait. Kill me through pneumonia.” For me, I’d like this damned disease to be pinpointed and say, “She died from FTD”. Her brain collapsed as it died and all these complications resulted from that.
I understand FTD is seldom listed as a cause of death. But all the complications stem from that honest fact.
I hate this disease. I am an Elder with it, but when I read petitions from 30-40 yr olds I am sickened. I think it is the disease of the 21st century, as we burn ourselves out proving to our company how worthy we are.
I think that is how I have mine. But it’s just conjecture. Not enough studies, no medications, a flip of a coin … that’s how we are diagnosed.
Next week I will celebrate my 3rd year since diagnosis of 6 months to 2 years. My neuroligist hates me I think. I am not playing by the FTD rules, I guess.
Papa, are you listening? It’s me, Vicki
* A “Slurpee” is a frozen flavored drink sold by the 7-Eleven convenience-store company since 1967. Find out lots more about the Slurpee on Wikipedia. And no, this isn’t a sponsored post 🙂
And we never got the free Slurpee. Sorry I misled you. But it was a great doctor day, none the less.
Vicki, I’m glad you have lived longer than the doctor predicted. For reading you helps me deal with my husband.
Michele, I offer prayers for you, as caregiver, and for your husband. I live alone, adult kids do as much as they can. I cannot imagine how it feels to watch a loved one as they change, sometimes minute-to-minute, sometimes day-to-day. Any time you want to contact me, I would be most honored to respond.
Great you don’t play by the rules with FTD Vicki – the doctors are still learning and you are unique!
Say, I have the same problems as those early questions on symptoms revealed!
We are still fighting over here to get FTD/ Alzheimers etc as a cause of demise on certificate but is improving gradually.
Have known people with frequent UTI’s have lowdose antibiotics prescribed as a regular daily treatment/prevention – rarely tho I think, but our system can take ages thro tests etc to get diagnosis and then get drugs (NHS)which leaves person with infection far too long I think. Need a better ‘tune-up’ with that here! Hugs 🙂
Freda, my dear Freda!! thank you, as always, for just being present as I ramble on. And, for the sage advice. I was on sulfa 3x a week to keep UTI’s at bay. Right now they think I have kidney stones, so a whole new adventure is beginning. Yay!!
Love & blessings, Vicki
Drinking cranberry juice may help those UTIs. Thelma
take lots of cranberry capsules, would take 5 gals a day Doc said. Really would need some sturdy Depends! LOL.
Hope all is well, Louise