Alzheimers

[Canadian Jayne]

The news said that Gene Wilder's
Alzheimers was a factor in his death
I also just recently lost a friend/relative to
the disease, the body just shutting down.
The type my f/r had was diagnosed early
but extended over a long period of time
he also participated in University studies
while he had it.
What we were most amazed at was he still
kept his amazing humour for a very long
time and we often would break out laughing.
It was the last 6 months that were the
hardest. But he was one of the best and
was/is an amazing man I have ever met.
( I believe he's just gone to another type of
life, where he's back to his old self in spirit)

[grinchy steve]

I'm so sorry to read that.

I do understand the struggle with a disease or condition that takes over your body and ... your whole life. July 2013 is marked as the month everything changed after a tick bite. I escaped death. But nothing was the same anymore. Something happened and went very wrong. Some may say it's a complicated version of Lyme they can't get under control, others diagnose it as Tick Borne Encephalitis doing more and more damage ... In the end I don't care what they call it anymore. In three years time they've tried everything and nothing helps. They don't know where it's going from now. Last september I couldn't walk anymore for three weeks long. Nobody can explain it. And last week, they gave up on finding a threatment. They simply can't figure it out. I could see specialists overseas, but financially this unfortunate happening has been a total disaster for me and my family. So there are no options left but wait and see how this goes ...

Everything changed. There's nothing left of the social life I had, instead of getting lots of support - incomprehension took over many minds. Few people stay when daily life is a struggle. I guess they can't handle the "in between" stage where you slowly get worse year by year. You know, you either get better or ... it ends. It's the in between people can't deal with. So, two thumbs way up for you Jayne. Sounds like you cared a lot about your friend and just sticked around during every stage. It takes a big heart and brave mind to do that. And while it might seem to be just 'obvious', it clearly isn't. You should be respected for that, it's what defines a person.

And I have to say, just like Jim Carrey was the light in my life during my years as a teenager for many reasons -he kinda saved me indirectly from being pushed down forever-, my sense of humor survived. And just trying to find joy in the smallest things (cliché, cliché) is what keeps me going now. To make other people, the ones that are still around, laugh still is one of my goals. Okay, my impressions, voices, facial expressions and physical stuff is toned down extremely, since my condition doesn't allow me to go full force anymore without having to pay afterwards. I always try to hide it and avoid the talks being about that subject again. I want people to focus on good things when it comes to me. And I will listen to their problems instead. That's the least I can do when they want to stay in my life.

So, it's a good thing to read how you remember your friend. And it's the best thing you can say about him, imo. How his spirit will be remembered forever. It's how I would like to be remembered. People actually tell me how proud they are about how I still put other people first and always try to look at life in a positive way ... Or at least seeing some humor in all of it. And it's true, ... despite the fact enjoying a day is not easy when you are in constant pain and exhausted every minute of your life and I had to give up all my dreams, I'm still able to do it. I guess I'm lucky my mind is able to see the beauty in life itself.

[Canadian Jayne]

Keep going Steve
and do what u can
I think all of us need to keep the positive
spew out the negative
I know of a few people that
suffer with something similar
to what u have
some say it's like having internal shingles
and when the pain comes it is in intense
and it affects the nerves
Out west they call Lyme disease rocky Mountainfever
They may have more researchon this than in the east
stay strong as best u can

[grinchy steve]

Yes we can !

A mistake that is often made however, Rocky Mountain Fever is not Lyme at all, it's another tick-related infection. Like TBE is no Lyme either. But many of the symptoms are similar, indeed. And very often, even doctors don't know the difference, while the way it works is very different. Yeah, internal shingles ... that's about 5% of all the symptoms, but it's not a bad way to describe that part indeed. That aside.

[EvaAraujo]

Yes we can !

A mistake that is often made however, Rocky Mountain Fever is not Lyme at all, it's another tick-related infection. Like TBE is no Lyme either. But many of the symptoms are similar, indeed. And very often, even doctors don't know the difference, while the way it works is very different. Yeah, internal shingles ... that's about 5% of all the symptoms, but it's not a bad way to describe that part indeed. That aside.

I'm sorry to hear about your struggle. But keep it up!
We're stronger than we think. If you need anything let us know!

[grinchy steve]

Spank you, spank you ! I just make the best of it.

[tessamae]

Grinchy, I'm so sorry to read about what you've been going through. I can't imagine.

Since it seems conventional medicine has run out of ideas for you, have you looked into alternative therapies? Many doctors pooh-pooh alternative medicine but it can work. If not a complete cure, then an improvement.

Jayne, my mother has Alzheimer's, has had for at least seven years now. It sucks. Good for you for being there for your friend.

[fluffy]

Awe Steve that's really rough......i hope time and physio get you to a better place. ....don't be hard on yourself though, it could take a long time to get your head around it....be kind to yourself. Hugs.
And CJ i'm sorry about your friend.....i think that's such a tragic and sad condition..... folk might not be aware of this but our pets get their own version too....

[AdaL]

Sorry to everyone having a hard time. xx

[AdaL]

folk might not be aware of this but our pets get their own version too....

I had heard of that, yeah.

[grinchy steve]

Since it seems conventional medicine has run out of ideas for you, have you looked into alternative therapies?

Yes, I've tried about everything that's out there. No (big) succes, so far. Osteopathy is the only thing that's able to soften down the heaviest headaches after those meningitis attacks. But just a tiny bit. I'll just keep searching.

Thanks all btw! including Tommy who's post disappeared(?). I didn't react earlier because I feel kinda guilty for telling my story here, since I don't want it to take away the attention from Jayne's original post about the friend and Alzheimer story. Didn't think that through while posting.

[fluffy]

Are there any other meds you can try Steve?

[grinchy steve]

Nope. Only those I can't afford.

[fluffy]

awe, i'm sorry to hear that Steve.... ...be kind to yourself though, time is a great healer, it's cliched but true.