Room For All

Welcome to Wondercafe2!

A community where we discuss, share, and have some fun together. Join today and become a part of it!

Register Log in
Nancy said:
Good luck with everything tomorrow Seeler. I wonder if your grandson wants to go with you, to learn more about what is going on with you.
Click to expand...
I would prefer to be free to ask my questions and perhaps let down my defenses and share my fears and frustrations without worrying about how this sensitive boy will react. I have explained, and will continue to explain, what is happening to my body - and 'why God doesn't stop Grammy's hand from shaking'.
But when I am not too sure of myself and how I will react, I will try to protect him until he is older.
He has expressed no desire to come with me - of course he thinks it is just another boring medical appointment like we sat through yesterday. He is content to visit the neighbours. His mom is also comfortable with that arrangement.
Meanwhile, it's almost time to brush my teeth and out the door. Thanks for your good wishes.
 
will be thinking of you, Seeler. It is another beautiful day here, with cool breeze. I saw vancouver weather had dropped. It wouldn't be Canada if we weren't talking about the weather. I am not sure if I could live in a place where the weather varies by a degree or two,.
 
I've been away for a week and am just back.
Heard your news Pinga You must be disappointed that all is not well but pleased that it is "fixable"
Glad to hear you have gently started back at Crossfit. (Now that's an oxymoron gentle crossfit?!)

Be gentle with yourself-do what gives you pleasure and makes you healthy.
 
Thinking about you today,seeler. I am sure CrazyDad relates to your anxieties.

Pinga. laughing is so good for you and maybe even farting.

As far a weather goes ours can fluctuate by 20 degrees or more some days.
 
CT Scan tomorrow, then trip to Juravinski Cancer Center on Friday. Looking forward to seeing my sister next week.
Never had a CT scan before....will be an experience.

Laughing is good for you, Crazyheart.
 
The flare-up is slowly but continually reducing. Now I know the reason they call it gout is because you keep wanting to tell it to, "G'out! G'out!" :D
 
Well, Grandson (who seemed just fine with the arrangements from when he arrived this morning) waited until we were on the neighbour's step ringing her doorbell to ask why he couldn't just come we us. No time for explanation - just assurance that I would answer his questions later.
Visit went well - definitely developing some problems that weren't evident at last visit, but in general doing well. Copied an abstract pencil drawing, wrote down a short sentence that she told me (was this a test for memory or penmanship or both), touched her finger and the tip of my nose first with my right hand and then the left, pushed against her hands, clapped, tapped feet, walked down the corridor and back while she observed. I have more stiffness and jerky movements. Surprisingly instead of increasing or changing my meds, she is decreasing the doseage. Apparently the very meds that help to control the tremors might be causing the jerky movements. She is also concerned about my shallow breathing and ordered a chest xray.

Grandson didn't have any questions when I got back. More interested in a game on his I-pod.


Rather than next year, she wants to see me next month.

ps - she also thinks I might be depressed. Do you think I'm depressed?
 
Seeler said:
ps - she also thinks I might be depressed. Do you think I'm depressed?
Click to expand...
You don't come across that way to me, but it's not something I'm trained to assess and online only gives so much info.
Did she say why she thinks you may be depressed?
 
I should have been at the out-patient hospital and maybe even done by now. My allergies prevented me from doing that though, it just really flared up and between blowing my nose, sneezing, eyes running and trying not to rub my eyes and skin I figured it was better for things to calm down before driving. I'll make it for the afternoon.
 
No, he's not. He's been in the hospital almost a month, almost lost a foot and will be using a scooter at least in the short term when they let him out. He won't be working again for a long time (he was an intake counselor at the local Sally Ann).
 
They keep getting pickier with the blood products it seems. It used to be call clinic a few days before go in, drop off logs and get product. They changed the logs asking for more info - ok. They got really strict about the logs, which would be ok except they often misplace them and it affects how much they want to give me and I get lectured. They got a new phone number just for orders, fine, except the tone I get responded to when I didn't have ESP to know that there was a new line. They started requesting to know if you were coming morning or afternoon. When I called today to let them know about coming later today I noticed they have restricted the hours for pickup.

Now I got a call back to set up a specific time this afternoon. I don't know why they can't have 2 people picking up at the same time? It's hard to plan as I want to get testing as well, who knows how long the wait will be and the amount of stuff I get can't easily be carried around and I don't want to leave it all in the car due to expense of the stuff and autothefts as well as temperature risks (although it's cooler today, probably would be ok).
 
hey Seeler - sounds like she did the usual exam - and likely she wants you back in month to just follow up on the effect of medication decrease.

Do you think you're depressed? I don't pick that up from your posts here - but that's not the best marker. Some people with Parkinsons' do develop depression - did she have you do an inventory of any kind?
 
BetteTheRed said:
No, he's not. He's been in the hospital almost a month, almost lost a foot and will be using a scooter at least in the short term when they let him out. He won't be working again for a long time (he was an intake counselor at the local Sally Ann).
Click to expand...

:(

It's so important to take good care of our health - something I'm really learning only this year.
 
It is raining on and off here today, and cooler. Who knows if we'll get another blast of heat still. Probably. Wouldn't be surprised.

Good news, a little bit, is my roommate brought in another foster cat - so now we have a little dog (who isn't bonded with me, he's stuck like glue to my roommate), and a cat. He's a big black and white tuxedo cat, and his name is Reggie. He's very sweet. He bonded with me pretty fast, and also decided he wanted to hang out on the top shelf of my closet last night. He and the dog are not quite friends yet, but the dog wants to be...the cat isn't so sure! Apparently he has lived with a dog before, and they got along, but the dog is just overly happy to have him here!
 
Last edited:
Back with meds & supplies. My amount given out has changed again, less than before. Since I can't get supplies separately that's probably good. It meant I had 2 large bags of meds instead of 3, a set of large sharps contains completely filled with supplies and a large bag of supplies. With the old amount I probably would have needed another bag of supplies too. I bring a huge tote bag to carry things, but it's still difficult, especially with all the up and down levels, due to the way the building is connected to parking, when I need to get out my ticket to pay for parking, get through the push and pull doors to get to the parkade and walk through the parkade.

There's a new manager worried that people are stockpiling things. This means I no longer get say a box of 100 needles, I get them all loose directly correlated to the number of doses of medication. PITA, especially considering every failed attempt = a new needle. She was even pushing that we should be paying.

The logs has also changed, now they take copies I keep originals. Just annoying when I had things set up already.

When to call to order is also tricky, they want you to have no more than 2 weeks of doses left. Hard to predict when I've gone through 1.5 weeks worth in a day due to an attack. They close early, close for lunch, can't order on weekends, and they need enough days notice too.

If patients like me weren't so rare I can't see this process being so difficult.
 
Seeler -- The appointment sounded like it went okay. Your doctor seems concerned and caring. I'm like the others who say it is hard to tell about depression on-line. But you definitely seem level-headed and very generous in what you offer to others. THAT we can tell online! Take care of yourself.
 
You must log in or register to reply here.
Back
Top