Category Archives: MS related
12 things I’ve learned over the many years since his MS DX
- The first thing I learned is there is no cure for Multiple Sclerosis, but everyone thinks he will get better.
- Secondary progressive MS means a downward spiral to the worst possible scenario you can think of happening.
- There is no cure for MS.
- No one really cares. They are just glad it’s not them.
- When asked point-blank for help, MS organizations do a few token things to make them feel better. They don’t really help in ways that are needed. There is no such thing as help.
- So-called friends stop visiting. Leaving the MS patient very lonely and therefore more apt to drive the caregiver crazy.
- It’s impossible to do dishes and listen to him ramble on about something on the TV I didn’t see or hear because I was doing dishes and can’t see or hear the TV much less his mumbles over running water. No one else is going to do the dishes.
- Caregivers never get a break from the daily insanity.
- I’m always terrified. You can learn to live with fear.
- I cry and cuss much more than I ever used to.
- I miss hugs. He used to hug me every day.
- You can’t lose weight when you are always stressed.
There are more things but I figured 12 was enough. You all have a good one.
Swamp monsters and frustration
The Curmudgeon is still having problems getting around. He usually takes the dogs out and feeds them in the morning, he’s having trouble doing that. He’s doing less and less. It is frustrating for both of us. It’s difficult for me because I do need to get some sleep sometime and mornings are when I usually get my sleep.
There’s no help in sight. The MS Society scooted off as soon as they figured they’d done their token bit of help. Two safety bars, a seat for the bath, a lame counselor for me to talk to (because they were afraid I was crazy) to me it felt like talking to our old prying, nosy neighbor, and then there were their empty promises of help to get the house in order so I can keep up with it. I haven’t been able to catch up with the dirt since the heart attack–that’s over two years ago.
With two days of rain, the pups have ceased being cooperative. They don’t want to go out in the rain and mud any more than we do. I swear as revenge for making them go out in the rain, they purposely seek out the muddiest areas of the yard to traipse through. My kitchen floor my never be clean again. Little swamp monsters!
Who us? We is innocent!
8 days after the Tea Tree oil incident…
Okay, it’s been eight days. The Curmudgeon is still not back up to how well he was before the idiot stylist shampooed his hair with the Tea Tree oil shampoo. He is not walking well and has had to resort to using his walker off and on. This is a total set back from where he was eight days ago.
All we can do is wait and see if it eventually gets out of his system and he gains some of what he lost back. Two steps forward and three steps back is not a good thing.
Please, tell manufacturers that use Tea Tree oil as one of their ingredients to put warning labels on their products. The life of a person with a disease like MS is difficult enough, they do not need things like this to worsen their condition.
We want more of this
And less of this.
Three days after the Tea Tree oil incident
The Curmudgeon is still not quite back to where he was before. Thanks to the idiot who used the Tea Tree oil infused shampoo on him. It is almost as if he had an MS relapse, although with secondary Progressive MS he doesn’t have those, it’s more a steady but slow downhill journey.
At least today he could walk, and he managed to do his normal daily routine, although with some effort. That’s a blessing. Maybe in a few more days he’ll be back to where he was before the stylist used the Tea Tree Oil shampoo. I hope so.
What you got there Dad? You gonna share it?
Tea Tree oil warning. Again.
I have commented on the dangers of Tea Tree oil before, and here we go again. I spent the day yesterday watching The Curmudgeon struggle to walk. Why? Because the day before, he went to get his hair cut, and the gal that did it, did not warn him, did not ask him if it was okay to use, instead she just began to shampoo his head with a shampoo containing Tea Tree oil.
Had he not noticed the scent and asked if Tea Tree oil was in the shampoo it could’ve been worse. He yelled, “get it off, get it off, I have a bad reaction to it!” She washed his hair twice with another shampoo but even then it was not enough. When he woke yesterday he was barely able to walk.
Tea Tree oil can cause severe reactions in people (and pets) and should never be used without asking if the person (or pet) has ever had a reaction to it. The Curmudgeon’s MS is deeply affected by Tea Tree oil.
Years ago, one of our dogs had a severe reaction to it too. We were told to put it on an inter-digital cyst and when we did his foot swelled to football size. Thank goodness for Benedryl and a good vet.
Please, use it with caution!!!! The damned stuff needs a warning label and shouldn’t be put willy-nilly into everything.
Every day is new throw of the dice.
Over the next several weeks I will be experimenting with my writing in hopes to hit a new groove and get my books finished. So be prepared for some nonsense and, I hope, fun.
I have been in such a horrible brain freeze for almost a year now, and that frightens me. I don’t know if it’s my medications or just the stress of daily life here at Casa Doggonedmysteries.
Stress like today. I hear The Curmudgeon’s voice come over the phone which wakes me with a jolt. Then, with heart pounding and adrenalin taking a quick jog though my system, I dashed to downstairs to find him on the kitchen floor. I couldn’t get him up.
Once I made him comfortable, I dashed back upstairs to get dressed, and then ran over to get the neighbor to help. He got The Curmudgeon up and to his chair. We haven’t had a day like this since he started the new medication. I hope this is an aberration.
Later, he was able to go upstairs and climb into bed for a long rest. After midnight, he came back downstairs and seemed much improved. Let’s hope the improvement continues.
You all have a good one.
The neurologist is pleased.
Took The Curmudgeon to his Neurologist appointment, the first one since he’s been on the Tecfidera, and she was tickled to see him come into the office with his cane instead of his walker.
She saw improvement in every test she did on him. I do believe she’s as excited about the results as we have been. She does agree with me that he should start working out with the weights on a regular basis to build up his muscle strength.
He goes back in four months, it would be wonderful to have even more improvement to show her.
You all have a good one!
Not sure what day of the Tecfidera we’re on…
Whatever day it is, I have seen much improvement over how The Curmudgeon was on the Avonex. He’s had the minimum of side effects, just some mild flushing.
I think the biggest thing for him now is to regain some muscle strength. Therefore, I won’t help him with the dogs in the morning if I get up early. He needs to walk around and get his muscles working.
I notice he’s using his walker less and is back to using his cane more. 😀
You all have a good one!
Day 8 of Tecfidera
Day seven of the Tecfidera is over. We shall see what happens today on day eight, this is the day he starts the higher maintenance dose of 240 mg. Twice a day.
Keep your fingers crossed that he doesn’t have the runs as part of the side effects. This is what he dreads the most.
So far all he has had was mild flushing and only with his morning dose, mind you this was on the lower dosage.
Halloween question: Would a zombie find an MS brain yummy?
Halloween 2007 (Photo credit: gadgetgirl)
Day three of Tecfidera
The Curmudgeon says he’s finding it easier to get up and down from the floor. (We have two dogs they like him to get on their level from time to time.) This may be true or wishful thinking on his part, we shall see.
I’m still seeing plenty of balance issues but he did manage an outing yesterday without using his rollator, he used his cane instead. He hasn’t done that for a very long time.
He really did seem to be in better spirits the last two days than I’ve seen him in a while.
If things keep going this well I can see me getting to my Pennwriters conference in May. Whoohoo!
“Rollator”, to help with walking (Photo credit: Wikipedia)
It started yesterday
So we were surprised yesterday when The Curmudgeon’s starter kit showed up for his Tecfidera. He was told he’d get it Wednesday.
Therefore, he took his first two doses yesterday. Now we wait and see how it goes from here.
Warnings and Precautions
Tecfidera reduced blood lymphocyte (white blood cell) counts but no
significant or severe infections were reported. Liver enzyme tests were
elevated, but there were no reports of significant liver injury or liver
failure.Possible Side Effects
-
The most common side effects in the clinical trials of Tecfidera were
flushing (which can create a sensation of heat or itching and a red
blush on the skin) and gastrointestinal events (such as diarrhea,
nausea, and upper abdominal pain). The incidence of these events during
clinical trials was highest in the first month of treatment, decreasing
thereafter. Taking Tecfidera with food may reduce flushing. Tecfidera
reduced blood lymphocyte (white blood cell) counts but no significant or
severe infections were reported.
So far he’s had the flushing. We’re hoping that’s all he gets.
You all have a good one!
Doggonedmysteries 