Category Archives: MS related

Those MS organizations? No, they don’t help him.

     In all the years since The Curmudgeon was first diagnosed with MS to now,   I don’t think there’s been but one time the MS society was ever any help at all.  I’m not real sure how much or if they had something to do with the single time we got a useful item for free that actually aided The Curmudgeon.  His ice vest was/is a wonderful thing for him.

I do wish the MS society was of help.  They aren’t.  All they do is send us magazines with articles about relapsing remitting MS and nothing about his secondary progressive MS.  The other thing they do, is ask for money that we don’t have.

     He has a mobility scooter that is out of commission and no one will even look at it or attempt to fix it for him.  Therefore, taking the dogs out more than twice in the morning is impossible for him since he no longer has a scooter to use.  He misses being able to go beyond the confines of the house.

Getting him over to a place in another city  to pick up a much-needed walker is turning into a logistical nightmare.  There are days where disappearing somewhere to have a good cry is a necessity.

     You all have a good one.

 

Oops, that shot that plan

     Some days, when someone you love has Multiple Sclerosis, plans change quickly.  I seldom make plans to go anywhere too far from home in case he needs me in a hurry.  I did manage to slip away to the Silverwood dog show for one day last week.  It was unfortunate that our time was very limited there.

     Yesterday was one of those make no plans because they are screwed days.  The Curmudgeon had a doctor appointment.  Early last week he told me about it and said he’d drive himself.  Therefore, I sort of planned to take Patty for a walk in the park, because it was sunny, because I needed to get out of the house, and because I wanted to try out her new collar.  About a half an hour before I planned to go, The Curmudgeon told me he needed me to drive him. 

     Sorry Patty, we’ll go to plan B and walk tomorrow.  You all have a good one!

When the bad days outnumber the good … get the most out of the good days

     As The Curmudgeon is beginning to have more bad days than good, we work hard to make his good days more fun.  I have less free time since on his bad days I have to be on my toes and ready for anything.

     It saddens both of us that we can no longer do the things we used to enjoy doing together.   I miss going fishing.  It’s not the same without him along.  He doesn’t walk well so walking along an uneven river bank is no longer possible.

      We no longer go to dog shows, something we always enjoyed.

     This time of year he used to enjoy helping to create a wild look and sound for our porch for trick or treat night.  Now it’s just G and I working on it.

     I hate to see the pain in his eyes as another thing he loves to do is crossed off his can do list.

     If wishes were horses than beggars would ride.  If my wishes were anything, it’d be a cure for MS.

     You all have a good one.

What happened at the doctor…

     The Curmudgeon’s neurologist appointment resulted in him getting a prescription for a rollator, and a scolding for not using one that day.  His walking was lousy. 

     After we left there I stopped at the Red Robin for a late lunch.  I needed to take my pills and I needed to eat with them.  The Curmudgeon had their Bleu Ribbon burger.  I had Riblets and Clucks.  Our very late lunch went on to be our early dinner.  Later on neither one of us was interested in anything more than a light snack.

     No G, we didn’t get the apple pie bites with caramel sauce.  By the way folks, if you haven’t tried them, they are to die for–G and I have had them and love them.

Red Robin

Red Robin (Photo credit: Wikipedia)

Too much heat is no good for MS patients

     I wish I could say that The Curmudgeon was doing fine, but I can’t.   He had another very bad day yesterday.  It is a good thing that I stayed home instead of going to upper state Western NY to Aunt Janet’s funeral.  I don’t think he would’ve survived yesterday had I not been here.  

       When I cam downstairs, I found Patty shut in the kitchen and there was no sign of The Curmudgeon or Gavin.  I figured they were outside so I went to look.  So glad I did.  The Curmudgeon was on the floor of the porch in the excessive heat.  Gavin was guarding him but the poor dog could do nothing to help him.

      I managed to help The Curmudgeon slide into the kitchen on his back where he could cool down.  However, I could not get him up off the floor.  I made him as comfortable as possible and went looking for help.  Sunday morning and no one was home. 

     I finally found one neighbor at home and he came over.  He managed to get The Curmudgeon into a kitchen chair and then into my desk chair where he could wheel him to the living room and to his chair.  This is where he spent the rest of the day and most of the evening.  He finally was able to move well enough to climb the stairs and go to bed around eleven last night.

      I’ve told him that he shouldn’t do anything in the mornings with this heat until AFTER he puts on his ice vest.  Had he put it on yesterday I know he wouldn’t have fallen down and not been able to get up.

Sometimes people are wonderful!

     The day before yesterday was a horrible day here.  The Curmudgeon’s MS knocked him for a heck of a loop.  I had to get G’s husband over to help get him up from the floor.  Knowing we were heading over to the courthouse the next day stressed me out.  I could not see him trying to walk into the building at all.

     Yesterday we had to go to the courthouse to the registrar of wills office to meet our attorney and do a ton of paperwork.  I couldn’t sign the papers for The Curmudgeon, he HAD to be there.  Fortunately, he had a better day and was able to walk into the building.  It wouldn’t have been necessary because they were willing to come out to the car to do it all!  He didn’t have to stand, they took us to a small office where he could sit comfortably.  Before we knew it and with a minimum of fuss it was over and we were on our way home.

     I can’t get over how accommodating they were for him.  It’s  sad, but I’ve found that this is a rare thing.

     Thank you registrar of wills!  You were wonderful!

     You all have a good one!

You want drama? Take my yesterday, please!

     The Curmudgeon collapsed on the back porch yesterday.  For the life of me, I couldn’t get him on his feet.  I ran over and got two of my neighbors to help him.  This was all before my first cup of coffee, therefore I was cranky.  I hate being cranky with him.  I know it’s not his fault that these things happen.

     I spent the rest of the day running back and forth doing whatever he needed to have done.  If I cussed and babbled it was because of fear.  I also apologized to him for doing so.  It seemed as though I didn’t get a minute to rest when I’d be hopping up again to get something for him.  He knows I love him but I’m sure I made him feel awful a couple of times where I was so tired I felt as though I couldn’t catch my breath.  Better I cuss a bit than bottle all that fear and frustration inside.

     I curse all those MS agencies and societies that claim they help.  They don’t.  If they did, I might have a few solutions on how to better deal with days like this.  I’d have help for his bad days so I don’t end up back in the hospital.  It seems that once MS goes into Secondary Progressive even the doctors tend to back away.  Don’t give me sympathetic looks, don’t roll your eyes at me when I ask what’s available in the way of help, we aren’t a research project we are human beings at the ends our ropes.

     Once The Curmudgeon settled into bed for the night, I poured a glass of Chocovine.  It was a long chase but I finally caught my breath.

     You all have a good one!  I’m going to try.

MS takes its daily toll

     Most days The Curmudgeon can barely take the dogs out and feed them in the morning.  He insists that he do it.  He is at his best in the mornings and his best is most people’s worst. 

     This won’t get better.  We know it and work hard to accept it.  His walking is poor at best.  His balance sucks. 

     As the day goes on, he can do less and less.  By one or two in the afternoon he MUST take a nap.  It’s funny, the dogs have decided that they must take a nap then too.  If I don’t close their crate doors and drop the covers down, they will sit in them and whine or Gavin will stand in front of me and bark until I do.

     The Curmudgeon gets up around four and so do the pups.  I take the pups out and then they vie for who gets to sit on The Curmudgeon.    Usually Patty wins but Gavin does get there before her sometimes.

     I think they use this to see how many times they can make The Curmudgeon laugh.

     You all have a good one!

If the dogs could have, would they have helped him to his feet?

     I wish we could predict or at least have some idea ahead of time of when The Curmudgeon will have a bad day.  At least then I might be awake and downstairs when he can’t get up from the floor or ground.

     I really wish we didn’t have to worry about that sort of thing at all.  However, we do.  He had a bad day today.  He told me he had to sit down on the floor on the back porch for a bit yesterday morning when he felt as though he was going to fall.

     Later the same morning, and still before I got up he was on the floor in the kitchen. 

     The dogs were no help.   They assumed that he was down on the floor to play with them!   The Curmudgeon says that Gavin kept poking him in the ribs and back while Patty tried to get in some kisses.  They do love their Daddy.  It’s bad enough that he was struggling to get up, but then, with a case of the giggles, it was even more difficult for him to get to his feet.

     You all have a good one.

MS there are good days and bad days

     Yesterday was a good day for The Curmudgeon.  He seemed to have a decent amount of energy and his balance was fair most of the day.  Today should be about the same.

     I can’t say that about tomorrow.  Tomorrow is his day after shot day.  That is his worst day of the week.  Every Monday night he gives himself a shot of Avonex and every Tuesday he pays for it with poor balance, weakness, and sometimes flu like symptoms. 

      I think that’s a piss poor record for a medication that is supposed to do him such good.  Some days it feels so hopeless.

Updates on DH and the snow damage

     DH is much improved from his several days of muscle spasticity to our great relief.  His recovery is slow and we hope he will recover fully.

     The night of the dreaded Halloween snowstorm you could hear trees and branches snapping and popping all over the place.  All I heard today was the sound of chain saws.

     I have to somehow pull two broken magnolia limbs out of that tree and so far it looks like only one more tulip tree branch I’ll need to get down from that tree.  How you ask?  You got me by the short ones.  If my tree saw won’t reach I don’t know what I’ll do.

     Then I need to start raking leaves and dragging them out to the street for clean up.  The way I’m feeling now, this is going to take forever.

Another bad MS day here yesterday

     Not as bad as the last two days but bad enough to make me tell him he must go to the doctor today. 

     The use of extra meds as we had discussed with his neurologist may have helped a bit, but it still wasn’t enough.  The spasticity in the legs is bad enough but this entire episode has also had his stomach muscles spasming.  This is new.  This is also quite painful for him.

     I sit here feeling completely helpless since nothing I can do is of any help to him.  I’ve been sleeping in my chair downstairs so I can hear him if he has a problem.  In other words, sleep much?  Nope.