Posted 2/12/2010 on Facebook messages:

Jace Clark February 12 at 3:32pm
Vicki, thanks for accepting my request. I found you through a pick’s message board and subscribed to your blog. My mother has Picks dementia and is about your age. Your story just touched me. I think it’s wonderful that you want and are able to share your journey. If I can get my mother on facebook I would love for you two to be able to talk.

God bless you.
Jace Clark

–Thank you, whoever posted my link to the blog. We just have to keep working together.

<3 Vicki

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