Slipping Away. Jo Aubin has Alzheimer's. He's 38.

[LiberalArkie]

Robin Giles felt like she was missing a joke. It was Christmas morning in 2012, and she and her husband, Joël, were going through familiar traditions in their apartment in London, Ont. Later they’d go out to visit friends and family, but for now, it was just the two of them and their cats.

They opened their stockings first, and Robin was becoming more puzzled with each object she pulled out: They were utterly random. Jo had always been a thoughtful gift-giver. One year for Christmas, he gave Robin a beautiful set of bound Paddington Bear books, a nod to her childhood favourite. He’d often come home from work with an album for her, or a treasure he found at a used bookstore. Today, though, her stocking was filled with CDs she already owned, and a used container of hand cream, as though Jo had bought a store tester. She kept thinking there was a punchline or a theme she wasn’t seeing.

She and Jo put on coffee and made cinnamon buns, but when they started opening presents, Robin’s bewilderment deepened. Jo’s gifts to her were a pile of used DVDs—titles that held no sentimental value. One was Tin Cup. “I remember thinking, ‘What the f--k? I don’t like golf or Kevin Costner,” Robin says. As she recalls this, she and Jo laugh at the memory, but, in the moment, it was deeply unsettling. “I don’t get it,” she said to Jo. “Am I missing something?” He was at a loss, unable to explain.

“I remember being really upset that Christmas—not because of the material stuff, but because it just felt weird,” Robin says. “It felt really weird.”


Snip

Read More: http://site.macleans.ca/longform/alzheimers/index.html

[dembotoz]

1. i have told my kids that upon similar diagnosis i think i will take a drive to cabelas

short shopping list

[LiberalArkie]

9. I am single without kids, I plan to go to Petit Jean Mountain for a stroll.

[uppityperson]

3. Stamp collecting is a good hobby

[Arugula Latte]

4. Vaccines have saved literally hundreds of thousands of lives.

Enough with the anti-vax bs.

[NuclearDem]

5. Library's closing in 30 minutes.

[Brickbat]

7. Oh, shut up.

[tritsofme]

10. Good job MIRT!

[elleng]

6. Robin Giles has had to adjust her expectations of marriage. "He's still my family," she says

"If your family is in trouble, you take care of them."

[riderinthestorm]

8. Such a sad story along with a hideous dilemma - when to pull the trigger

with a dementia illness, when is the right time to go and will the law allow physician assisted suicide if the person isn't completely cognitively impaired.

Personally, I hope Canada allows him to go out whenever he chooses by an advanced directive. He's living under a death sentence already. If his directive to his wife is to "pull the trigger when I'm in Depends", then she should be able to make that decision unimpeded by the law.

Jeez, 38 yrs old. His Alzheimer's started when he was 10!!!

[Ilsa]

11. I'm glad they got to the diagnosis so quickly.

My first thought was about the BSE (bovine spongiform encephalopathy) scare the UK had. The Red Cross still screens blood donors with questions about travel to the UK.

That poor couple. How heartbreaking it is for them. I hope he can get aggressive treatment to improve his life.

[Warpy]

12. It's probably the inherited form of the disease

and it all traces back to a single village in Italy. I worked with one of the docs studying it intensively in the 80s, saw quite a few cases of it since people from all over the country would be flown in for the study.

Likely this guy is related to all of them.

While there are a few drugs out there to help people cope, there is no aggressive treatement for this disease that will do much of anything. I hope his wife is getting the support she needs.

[AndreaCG]

17. The last time I tried to donate blood was about 7 years ago

I was told no because I'd been in school in London in 1980 and nearly 30 years later they thought I might have mad cow disease. Even though I was a vegetarian in 1980! Ridiculous.

[Warpy]

26. That's because the illness can be present in some surprising places

like gelatin used to keep frostings stable and suet used to fry potatoes in that restaurants don't particularly own up to unless you bug them about what's in the Fryolator.

Spongiform encephalitis from any source is so devastating that people tend to be a little overconservative when it comes to protecting the blood supply from it. In addition, there is no test for it.

[orange you glad]

13. One Good Thing:

He'll get better care up there than he would down here. Still very sad, though.

[Not a Fan]

14. from the American Academy of Neurology

Study: Link Between Vitamin D and Dementia Risk Confirmed

https://www.aan.com/PressRoom/home/PressRelease/1300

"“We expected to find an association between low Vitamin D levels and the risk of dementia and Alzheimer’s disease, but the results were surprising—we actually found that the association was twice as strong as we anticipated,” said study author David J. Llewellyn, PhD, of the University of Exeter Medical School in the United Kingdom.

For the study, 1,658 people over the age of 65 who were dementia-free had their vitamin D blood levels tested. After an average of six years, 171 participants developed dementia and 102 had Alzheimer’s disease.

The study found that people with low levels of vitamin D had a 53 percent increased risk of developing dementia and those who were severely deficient had a 125 percent increased risk compared to participants with normal levels of vitamin D.

People with lower levels of vitamin D were nearly 70 percent more likely to develop Alzheimer’s disease and those who had severe deficiency were over 120 percent more likely to develop the disease.

The results remained the same after researchers adjusted for other factors that could affect risk of dementia, such as education, smoking and alcohol consumption.

“Clinical trials are now needed to establish whether eating foods such as oily fish or taking vitamin D supplements can delay or even prevent the onset of Alzheimer’s disease and dementia. We need to be cautious at this early stage and our latest results do not demonstrate that low vitamin D levels cause dementia. That said, our findings are very encouraging, and even if a small number of people could benefit, this would have enormous public health implications given the devastating and costly nature of dementia,” said Llewellyn."

Further analysis (a different article) interpreted this data as representing that fully 80% of Alzheimer's cases could be linked to VD3 deficiency.

[LiberalArkie]

15. And it may not be a lack of consumption of Vitamin D as the body's ability

to process it.

[Boudica the Lyoness]

16. Myth - Vitamin D supplementation is good for everyone

Myth - Vitamin D supplementation is good for everyone

May 2003 Expert Group on Vitamins and Minerals - Safe Upper Levels for Vitamins and Minerals

Excessive vitamin D intake may lead to hypercalcaemia and hypercalciuria. Vitamin D promotes the absorption of calcium and the resorption of bone resulting in the deposition of calcium in soft tissues, diffuse demineralisation of bones and irreversible renal and cardiovascular toxicity. Patients with sarcoidosis are abnormally sensitive to vitamin D, due to uncontrolled conversion of the vitamin to its active form in the granulomatous tissue. Although the condition is uncommon, it would be a potential hazard if affected individuals were to take supplementary vitamin D.

Royal Brompton & Harefield NHS Foundation Trust - Sarcoidosis FAQ
Can I take vitamins and supplements?
You should avoid taking vitamin D, as this vitamin is produced in excess by sarcoid granulomas. Unless osteoporosis is present, we normally recommend also avoiding calcium supplements, although this can be discussed on a case-by-case basis.

Saidenberg-Kermanac'h and colleagues compared vitamin D levels with bone fragility fractures in their sarcoidosis clinic. They found that a 25-(OH) vitamin D level between 10 and 20Â ng/ml was associated with the lowest risk of bone fractures and paradoxically higher levels increased the risk of bone fractures. Using less vitamin D supplementation may simultaneously lower the risk for bone fracture and hypercalcemia in sarcoidosis.

Calcium and Vitamin D supplementation in Sarcoidosis
Hypercalcemia improved in 90% of patients, including eight patients treated solely with vitamin D supplement withdrawal. Renal insufficiency, documented in 41 (42%) of SAHC patients, improved with hypercalcemia treatment.

[arikara]

24. Interesting.

I have noticed that often it takes more than one thing to set something off, or rather often a combination of things. There's also evidence that exposure to aluminum along with Magnesium deficiency contributes to the disease if you have a particular gene. Its too bad that research doesn't focus on nutrition instead of magic pills, but I guess you can't make any money by telling people to avoid ingesting aluminum and increase your magnesium intake.

http://www.hdfoster.com/dr-fosters-work-alzheimers-disease

Our food now is severely deficient in magnesium compared to years ago. Also, people are slathering themselves in sunscreen and not allowing the suns rays to touch their body anymore.

[Juicy_Bellows]

18. Sad story - Terrible disease.

I wish people would show some compassion before they exude their arm chair psyche analysis.

[LiberalArkie]

19. My mom went with it on Mothers Day of 1988. A long battle before the medical people even knew

what it was. At 67 I feel myself slipping but so far I pass the tests. I remember in my late 30's of walking into my parents house at noon, we always ate together and she woke up and fired a pistol at me. Thank God she never had gun training so was a bad shot. I still had to tote the 60 gallon water heater that was full outside and install a new one though.

[Juicy_Bellows]

20. Wow, that's some scary stuff.

I hope all goes well, please try and keep your mind happy and active. I wish you the best.

[LiberalArkie]

21. So far I pass all the tests, even peanut butter at 40 paces is good. I think I just may have to face

up that I am getting old. I go to my doc and complain about this new problem and she always says "Mr. Johnson you are just getting old" and then she usually says I am the healthiest 40 year she has. And she knows how old I am.

[Juicy_Bellows]

22. Well alright! All we can do is make the best of it.

Enjoy each day as you see fit - it's all we can do. Hope you have a good evening!

She sounds like a good doctor.

Cheers!

[arikara]

25. I'm sorry...

my dad passed away in Feb because of complications due to dementia. He was 77 but was only in his 50's when he started showing signs. Please read that book at the link I posted above, it might help. I take magnesium daily and avoid aluminum. Who knows, it sure won't hurt anything. Mg is very inexpensive as well as benign, and we are all deficient nowadays.

[mmonk]

23. Very well written account. "I am mine".