Hi Vicki, yes my mother does get drained very easily, she is tired a lot. My mum also is on the phone to me and crying but not actually crying.

The day before yesterday I phoned my mother and said to her, ‘you know what you want to say and can not get the words out?’ and she said ‘yes’. She was having a very good day, was like my mum was back with us again.

This illness makes me so cross and upset after seeing my Aunt go through it all, it is so sad how it wrecks lives.

When my mother was working as a midwife, she got pentioned off, she was so good at her job and cared so much, when she was a nurse in oncology she would visit her patients on her days off. The hospital Addenbrookes wanted her to be a specialist nurse in oncolgy, she chose to train to be a midwife.

How is your day going?

Take care.

—————

I appreciate so much hearing how others are doing, because it both affirms and frightens me. This awful condition is misdiagnosed as Parkinson’s, MS, ALS (Lou Gherig’s Disease) and Alzheimers. Or depression, anxiety or iron deficiency.

By the time a conslusive diagnosis is made (only after they have ruled out all the others – which can take years) many of us are beyond the mid-phases. FTD/Picks/FLD can actually accerlate with Alzheimer treatments.

Typically, according to the Association for Frontal Temporal Demetia (FTD – see link) the prognosis is generally 2-10 years from diagnosis, striking those most active: 40’s and 50’s. But one young woman was diagnosed at 30, and lived about a year. I’m an old bird, but I believe I was in my later 50’s when the symptoms first appeared.

There is no cure, and there are no treatments. And no financially powerful advocate to raise funds for us. Even my general physicians had never heard of it.

If you or your loved one is receiving medication, most likely they are treating symptoms.

I am on an anti-depressant, another anti-depressent for sleep, ritalin for my increasingly diminished attention span, sulpha for ongoing infections (urinary tract and gum disease are most prevalant invaders for those with dementia). Ativan for anxiety and Dystonia periods.

Over the counter:

B-12 injections (weekly) are now replaced by a commercial sublingual tab (TriVita.com – Super Sublingual B-12 w/B-6, Folic Acid and Ginseng) memory and energy

St John’s Wort (depression)

Stool softeners (another problem shared by my peers)

Calcium w/vit D (bones)

Megadoses of Vit D -3 – 6,000 units daily (mental clarity, problem solving, memory. USDA only has 2,000 units as their recommendation.

Fish Oil – 2,000 units

Prenatal or enriched daily vitamins for older population

Iron (ferrous sulphate) – has been discontinued, until I can get the pre-natal version. Too harsh for my system.

Cranberry capsules (bladder/urinary tract)

MISCELLANEOUS: CPAP machine (sleep apnea, slows down brain cell loss)

***NOTE*** ALL THE ABOVE, INCLUDING VITAMINS AND CPAP WERE PRESCRIBED BY MY TEAM OF PHYSICIANS AND THERAPISTS. HAVING A COLLECTIVE SOURCE OF EACH SUGGESTION & RX IS A GREAT ADVANTAGE AND SAFER.

I don’t put anything in my mouth without checking to see if there are conflicts with all my other meds. Herbs, especially, can be dangerous in interaction, or at least diminishing the effects.

I’d like to know how others of you are being treated. Each time I hear, I take it to my doctor and ask.

Thanks friend, for sharing your mom’s progress with us.

xo, Vicki

Today was the first time that my conversation on the phone shifted from normal to s l o w and gutteral. The sunshine on the new snow shifted to darkness in one fell swoop. I scared both myself and the Credit Union lady … one sure way, I guess, to have creditors stop calling.

But it wasn’t funny. It was frightening. My friends have seen it happen, like my brain has endured a mudslide. And then a few normal words slide through, and then it’s covered again. I think I must sound like someone who has had a stroke.

I know one of the harsh symptoms of this affliction will be lose all ability to communicate. I think that’s everyone’s worst fear, like an Edgar Allen Poe story. “I’m still here!!” Like the Telltale Heart I will be walled up in my mind.

They now are happening a bit more frequently. But like all my symptoms, they ebb and flow. Attack and fall back.

At night, at final Papa goodnites, I wonder – and have yet to discover – if I will still be Vicki in the morning. Even I am starting to find I am entertaining thoughts of assisted care. They told me I would know when that time was. I think they ar right…

xo, Vicki

Well, I know I left you all hanging on the edge on Friday with the closing of whether I would shower or not. I didn’t realize it might cause insomnia for so many! So here is how the ‘rest of the story’ played out:

I pretty much finished the day where the story left off. BUT

1) yesterday I got my game on, wrote a shopping list, then 3 hrs later

2) I shopped for groceries for the month, alas I pooped out after 2 short trips with groceries from the car for the unloading. Fortunately, we have Michigan refrigerators (which start around Thanksgiving – you can store leftovers in your BBQ, garage, back porch or car). Unfortunately, I didn’t think to say ‘pack produce altogether’, so while I scanned as much as I could, sadly the menu this week will feature Wilted Lettuce salads.

3) Today, with Communion coming, how could I not shower? (I offer that one up as a Big Prayer for y’all.) So the hygene is done … for how long I do not know (sadly for visitors, but we don’t sweat in MI either)

4) Throughout the day brought in a few bags at a time, I think there were at least 1,000.

Now they are all in my kitchen and need niches to go to, but the Super Bowl is on … ;o}

oh and

5) I have a pork shoulder in the crockpot for pulled pork sammiches later during the game.

So I still have my ‘game’ on!

xo, Vicki

Before I fall asleep, after I say good night to Papa, Sofia and Jesse and pray for my friends and family, as I have throughout the day, I sometimes pause and wonder…

what or who will I be when I wake up? Was today my last good day or will I be healed, or at least halted in my deterioration? My studies show it could happen gradually, or truly overnight.

So, as I grab my ‘glow in the dark rosary’, if this night goes on forever know this:

I love you all more than I ever thought I could. I am the luckiest person I know to have so much love surround me every day. And should I not remember what has transpired today, I will remember you in my heart for the rest of my days on earth and as I go to my best home ever.

I love you. We fight a good fight. We are never alone…

xo, Vicki