|
Here is where you discuss everything under the sun, just keep it clean.
by Canadian Jayne » Fri Sep 02, 2016 3:46 am
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)
-
Canadian Jayne
- Dumb and Dumber To
-
- Posts: 8146
- Joined: Wed Apr 07, 2004 9:47 pm
- Location: somewhereoutthere,Ontario, Canada
-
by grinchy steve » Fri Sep 09, 2016 1:27 am
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.
-
grinchy steve
- Kick-Ass 2
-
- Posts: 1467
- Joined: Tue May 22, 2001 6:30 pm
- Location: Belgium
-
by Canadian Jayne » Fri Sep 09, 2016 3:34 am
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
-
Canadian Jayne
- Dumb and Dumber To
-
- Posts: 8146
- Joined: Wed Apr 07, 2004 9:47 pm
- Location: somewhereoutthere,Ontario, Canada
-
by grinchy steve » Fri Sep 09, 2016 1:23 pm
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.
-
grinchy steve
- Kick-Ass 2
-
- Posts: 1467
- Joined: Tue May 22, 2001 6:30 pm
- Location: Belgium
-
by EvaAraujo » Fri Sep 09, 2016 9:12 pm
grinchy steve wrote: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!
I'm a guardian of the spark... I'm a God damn and proud good fan... and I love it! = )>
-
EvaAraujo
- JCO Staff
-
- Posts: 2112
- Joined: Mon Dec 13, 2010 7:29 pm
- Location: Lisbon
-
by grinchy steve » Sat Sep 10, 2016 2:33 pm
Spank you, spank you ! I just make the best of it.
-
grinchy steve
- Kick-Ass 2
-
- Posts: 1467
- Joined: Tue May 22, 2001 6:30 pm
- Location: Belgium
-
by tessamae » Fri Nov 11, 2016 1:10 am
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.
-
tessamae
- Newbie
-
- Posts: 3
- Joined: Thu Nov 10, 2016 1:52 am
-
by fluffy » Fri Nov 11, 2016 10:02 am
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....
Fluffy
-
fluffy
- JCO Staff
-
- Posts: 20742
- Joined: Thu Apr 07, 2005 3:03 pm
- Location: Scotland
-
by AdaL » Fri Nov 11, 2016 10:24 am
Sorry to everyone having a hard time. xx
-
AdaL
- The Majestic
-
- Posts: 441
- Joined: Mon Nov 09, 2015 12:36 pm
- Location: London, UK.
by AdaL » Fri Nov 11, 2016 10:25 am
fluffy wrote: folk might not be aware of this but our pets get their own version too....
I had heard of that, yeah.
-
AdaL
- The Majestic
-
- Posts: 441
- Joined: Mon Nov 09, 2015 12:36 pm
- Location: London, UK.
by grinchy steve » Mon Nov 21, 2016 9:00 am
tessamae wrote: 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.
-
grinchy steve
- Kick-Ass 2
-
- Posts: 1467
- Joined: Tue May 22, 2001 6:30 pm
- Location: Belgium
-
by fluffy » Mon Nov 21, 2016 11:51 am
Are there any other meds you can try Steve?
Fluffy
-
fluffy
- JCO Staff
-
- Posts: 20742
- Joined: Thu Apr 07, 2005 3:03 pm
- Location: Scotland
-
by grinchy steve » Tue Nov 22, 2016 2:54 am
Nope. Only those I can't afford.
-
grinchy steve
- Kick-Ass 2
-
- Posts: 1467
- Joined: Tue May 22, 2001 6:30 pm
- Location: Belgium
-
by fluffy » Wed Nov 23, 2016 12:26 am
awe, i'm sorry to hear that Steve.... ...be kind to yourself though, time is a great healer, it's cliched but true.
Fluffy
-
fluffy
- JCO Staff
-
- Posts: 20742
- Joined: Thu Apr 07, 2005 3:03 pm
- Location: Scotland
-
Return to Off Topic
Who is online
Users browsing this forum: No registered users and 10 guests
| |