Another day from Hell

I certainly hope the weekend is better than today has been, man what a day.
Had an appointment for my motorized wheelchair as I was having problems with the tilt mechanism, it had been working intermittently yet the problem was becoming very persistent.
My appointment was for 8 AM what some of you would call paratransit here is called STO picked me up at 7:15 AM, we drove for less than a block when the driver realized he had picked up the wrong passenger so back home I went got dropped off lost a ticket because I dropped it somewhere and waited patiently for my bus to arrive. No less than five minutes later my bus showed up, I should also mention both of these buses were going to locations less than 200 feet apart "I'm not kidding"

Finally into the repair shop where my first priority was getting a coffee and a muffin that is after I had checked in and they had taken my chair. At approximately 11:30 AM I was told the part they required was not in stock and had to be ordered but before they ordered it they needed to weigh me to see if my weight was within the operable limits for the tilt mechanism.
Once that was done I was hoisted from the manual chair they have provided during my appointment to my electric chair.
By this time I knew I should visit the men's washroom and it was exactly that a visit the moment the washroom door opened my bladder decided it was a go! Crap talk about an uncomfortable feeling sitting in my chair and listening to the rain hitting the floor, and if you've ever been through this you know that you have absolutely no control.
First when you complain of urgency the neurologist prescribes medication to help, in my case after several years of taking I believe it was called Ditropan than one that stopped working something called oxibuten chloride until one day I had a urinary tract infection my first. A visit to the emergency ward where the urologist on duty took the pills and discarded them installed a Foley catheter which I wore for a week or so learned how to self catheterize in case I ever needed to and that was it.

No problems for several years but lately it seems it has a mind of its own. I left the washroom mentioning to the attendant someone should be called to clean up the mess I had left behind and proceeded to get ready to catch my bus. Now everything I own is wet except for my winter cape which I threw over myself zipped it up for the ride home.
Upon arrival the first thing I wanted to do was hit the shower yet I didn't want to chance it on my own especially after the day I'd experienced, fortunately my spouse was able to leave work early I was quite relieved to see her. Needless to say we did not waste any time I stripped the clothes went in the washer and I into the shower except I Slipped and fell to the ground in the shower. I was so pissed off at myself you cannot imagine, my legs hurt like hell from being twisted in ways they haven't been for a long long time. With my bath chair on the fritz "I'm still waiting for my battery" our only option was 911 again. Of course since it's not an emergency you may have to wait, I waited In the Dam Shower For Two Bloody Hours before they showed up and of course when they did it only took them less than three minutes to pick me up and put me back into my chair. This is no longer funny I am ticked off like you would not believe tomorrow I start looking for a real lift with a sling so that if correction when it happens next time we will be able to do something about it.

I'll tell you everyone has a mountain to cross I was just not ready for Mount Everest!

Keeping my fingers crossed for the rest of the weekend.

PS: I've decided that this year since I am not going to be walking in support of the MS Society I will be soliciting funds from my friends and family members yet it will be for the sole purpose of purchasing a lift.

Expensive little battery

Good morning everyone,

Haven't had that much to write about lately which is positive especially with MS, numerous things occur on a daily basis which makes quiet uneventful times very enjoyable.

Several weeks ago when I fell while my spouse was away we tried using my lift chair upon her arrival , nothing more than an electric bath chair, it lifts me high enough that I can transfer to my wheelchair. The trick is I have to make certain I am rested before attempting to lift my butt onto the chair if I'm exhausted forget it.
The chair isn't exactly as shown this seat was replaced with one of those wooden tops from a TV tray, it is sturdier yet rests approximately 3 inches from the ground when fully lowered.

As usual after checking to make certain I was okay she went got the chair from our bedroom positioned it behind me and I sat on the wooden bench only to press the up button and hear a beep? Tried it again up down still a beep, at this point we realized the chair was broken could not be used thus we had to rely on our ambulance service to pick me up and transfer me to my wheelchair.

I've had time to diagnose the problem caused by adead battery a small 12 V lead acid battery which costs $28 in the United States $64 in Canada! Parity who are we kidding we are simply getting hosed however I needed it ordered it yesterday should have it in my possession February 28 which is definitely an advantage over having to wait several weeks for the item to go through customs, brokerage fees etc. so I'm happy or at least satisfied. I will be very pleased if I have diagnosed the problem properly.

Here is a picture of the chair even though I am certain you have seen them before.

On another note, would anyone know how to copy or backup all of the posts written on your blog? There are quite a few things I would like to add yet I'm not certain if I've spoken of them previously. If anyone knows please let me know here or send me a note at ppms@hotmail.ca
Have a Great Day

Any more people out there?

The problem I'm having is one uploading a picture, sketch whatever it doesn't matter. You select the file press the upload button your item is uploaded as you can see it in the preview box yet if you look in the background there is no HTML coding shown in the dialog box where you would normally write what I'm writing now. Sometimes it works sometimes it doesn't almost like flipping a coin, it took me three tries to upload this sketch. The worst part is the problem comes in goes it's almost as bad as MS LOL
I hope it does not take them long to find the problem.
Michael

Feeling Better Today.

Woke up this morning telling myself that this would be a better day than yesterday and so far so good. I haven't tried doing anything that would make my blood pressure boil just playing with my computer trying to understand intermittent problems.

In some cases it is easy for me to upload a photograph, picture, diagram whatever hit the preview button and see what I have uploaded. This morning sometimes it works other times it doesn't. I have an account@blogspot.com and tried it no problems came back to Google and it worked this time. Filled out one of those forms sent it in and we will see what they say.
Has anyone ever linked one blog to another IE blogspot to Google or vice versa?
Wishing everyone a very enjoyable weekend, a long one if you're in Ontario
closing off with a sketch my oldest daughter drew of her baby while he was sleeping in her arms.

What a lousy day.

There are some days when my optimism seems to have gone awry and today was one of those days.
Today started off rather normally my spouse helped me out of bed, sat in my motorized wheelchair went to the washroom.
Then as she does every morning she dressed me as always towards the end after my trousers, socks and shoes are on, I make my way to the bathroom vanity where I get up and stand so she can lift my trousers. After this comes the T-shirt and then finally the coffee.

A quick conversation a kiss goodbye then she's out the door to return depending on her shift either five-ish or around 6 PM.
This gives me plenty of time to accomplish many things and do all those projects I've been planning to do so today I accomplished Nothing Absolutely Nothing! Certainly not because I didn't want to yet even though I've had MS for so long I've forgotten or I forget it's all encompassing hold it has on me. I wanted to fix an electric chair and needed to solder a wire, you think I could do that? Not a hope in hell. It is difficult to solder when you cannot feel the inside of your hands or the tip of your fingers, oh believe me I can still feel heat and I burnt myself a few times with that stupid soldering iron. So my chair is in the living room still not fixed and I'll need to once again ask my spouse for help.

I cannot hold on to utensils, I have an odd way of holding onto a fork and a spoon well it's a different challenge when it comes to a knife forget it I don't even touch it. My right hand isn't strong enough to cut a steak so again I must rely on my spouse to cut my food. I have my drivers license yet I haven't driven in quite some time it's too much of a hassle as we park the vehicle underground and the spaces are not wide enough for me to access the vehicle when I would like. In addition you know those commercials where they show you how easy it is to remove the seats to make room for the handicapped individual in a wheelchair well that's a bunch of crap. The damn seats must weigh over 100 pounds and they are certainly not easy to remove, oh yes they have wheels and once you get them on the wheels it's not so bad yet it's certainly not something I can do myself so again I must call my spouse.

When she returns from work there is usually a number of items papers, remote controls stuff I've dropped during the day yes I could use one of those pickup tools and I tried to repair mine today. You see the string broke yet it's long enough that I can thread it through the hole and glue something a button anything on the end of the string are prevented from going back into the grabber. Do you think I could squeeze five minute epoxy out of the tubes no, I tried and tried and poked a hole inside must be old. I know we have a new one somewhere in a cupboard I can not reach.

My arms, hands and fingers don't work that well my legs don't work at all. If I transfer it is a standup and twist motion before I sit down. Most everything I transfer to needs to be 24 or 25 inches high if not I do not have the strength to lift and transfer. I'm getting really sick of this yet there is not much I can do. Oh I love my computer really don't know what I would do without it yet I wish I'd be able to do other things I loved doing other things. If anything broke at my neighbors or my families homes whether it be well anything I was the first they would call. If you're well was not providing water I'd fix it, if your television was on the blink I would fix that too, lawn mowers, electrical, plumbing I did it all and now I feel so incapacitated and alone.

I am beginning to understand why many people who sought Dr. Kevorkian's assistance where people with MS. This really sucks!

It's the most unliked time of the year

It was after all inevitable, rich or poor sick or healthy it doesn't really matter. You could be dead and it still wouldn't matter.
They would find you, analyze and in the end leave you with a sense of emptiness all around. Yes it had to happen MS or not!

I Received My Tax Software Package Today

Actually the receipts started pouring in very early this year. First in line were the federal and provincial envelopes containing our very own unique identification code to file online.

Should be fairly easy this year other than my spouse mine will be something resembling.

0+0-0x0+0% of line 162 equals zero
Amount Due $.10
Refund $.0000
Amounts greater or lesser than $2.00 are neither reimbursed or collected.
Cool finally some breathing room.

Ouch I still have muscles as they hurt like hell!

I've been fairly quiet these past few days actually I've been very quiet sitting strapped to my wheelchair restricting my attempts to move a muscle. After having MS for so long I can assure you that I still have some muscle mass and honestly right now it hurts like hell.
My spouse had an evening on Monday to see an opera singer with her sister. While she was there I was at home doing what I do normally which really isn't much spend some time on the computer, watch a bit of TV, do a bit of reading and eating. It's the last part that got me into trouble, you know from my previous post that my cushion my favorite cushion is toast. Probably one of the first time I found something that duct tape simply won't stick to and even contact cement once dry is easily rolled off just by touching it with a finger.

Must get back to my story so anyways I was using another one of my cushions, a Roho high profile cushion. They are very comfortable and meant for people who spend a lot of time sitting and are prone to develop bed sores, the one thing about them is that they are not as stable as other cushions. You tend to roll on them when you're seated and boy did I roll, we had some chicken left over which just happened to be on the lowest possible shelf in our refrigerator. Usually not a problem but this time when I leaned forward air within the mattress was displaced to the rear of the mattress thus lowering the front to the point where my head hit the inside of the fridge door followed by my shoulder and for the next 45 minutes I tried to grab hold of something anything in order to lift myself back to the seating position.

As luck would have it and I didn't have any slowly I could feel myself sliding forward ever so slightly yet far enough that eventually I lost my grip and fell to the floor. There I was stretched out on the floor in front of a refrigerator with the door open, I must admit that at least being on the floor well it was certainly more comfortable than being in the chair bent over unable to move. Did not have a watch, could not reach my cell phone so I stayed there and waited. I'd say an hour and a half later my cell phone rang then the house phone it was my spouse she knew right away I was in trouble. She managed to slide me into the living room and at least provide a few blankets and a pillow. Now normally in these situations if I am not exhausted I have a modified electric bath chair and utilize it as a lift, it raises me high enough that I can safely transfer to my wheelchair. The bloody chair wouldn't work I still have to take it apart and see what's wrong yet at that moment we knew there was only one alternative and that was to call 911 to request ambulance assistance. There was no blood no trauma no urgency and the priority was set to we will go when there is nothing else which occurred approximately 1.5 to 2 hours after the initial call was placed.
When they arrived it took them less than one minute to lift me off the floor and deposit me onto my wheelchair, I went to bed before they left and the next morning I got up feeling as if I had played in the Super Bowl.

The good news is my dilemma with the cushion is resolved at least it will be shortly. My brother considered a snowbird purchased two of them and will be bringing them back in the spring in the meantime I will be extra careful with the choices I make. Probably a good time for me to start looking for a reliable lift with a sling you know those devices they normally utilize in old folks home. Don't you just love this stupid disease!

All I need is a patch and some glue.

Excuse the pun however sitting on one's but all the time is a pain in the, well you know. In order to prevent sores from sitting all the time I utilize a variety of cushions, must have six of them and like everything else I have my favourites.
The other day while sitting having dinner at a friend's house the dining room table appeared as if it was rising getting higher and higher it took a while for me to realize there was an air leak in my favourite cushion.

The next day we went to Canadian tire and purchased a patch repair kit normally used for bicycles, seemed to work but not for long a day or so later it was flat again so I called Roho the manufacture. Finding them was easy yet like most companies even if they list a Canadian location on Google they are actually in the states, no big deal I've ordered plenty of things before without running into any problems. However this time what I required could not be shipped to Canada. It consists of a small tube of neoprene glue and a couple of patches, I suspect the glue is the culprit as it is highly flammable. The customer service person I spoke with was very kind and courteous providing me with their distributor in Canada along with the phone number. The call to the distributor was also pleasant and resulted in two additional phone numbers for their dealers in my area. Tomorrow I have to call them and find out how much this kit will cost.

Today I'm using a different Roho is called a high profile cushion and while comfortable I don't like it that much. I want my mosaic which is the actual name of the cushion back inflated. It's been good I must admit I've had it for quite a few years and every time I stand or transfer and sit down again well let's say this sitting down part is more of a controlled crash. It's amazing it's lasted this long and I'll bet once repaired it will provide a few more years of comfort.

Today is Thursday and the saga continues, as previously mentioned I was provided with several dealers to contact, as it turns out nobody seems to know what the hell I'm talking about even though it is available. I called the Canadian supplier again and was given another number "one of their best dealers"
he doesn't have a clue either. I have a feeling my cushion will stay in its current unusable condition flattened the wind kicked out of it until I find some means of obtaining the proper materials to repair it. Until then I'm using a different seat cushion which is not a Roho.

I did contact a local repair shop "Courtland mobility" when I inquired about the patch they gave me a ballpark figure of one hour labour $50 plus parts? The cushion itself sells for $100 brand-new so hopefully I will be able to obtain the necessary repair kit for quite a bit less. Luckily I'm patient and my voice recognition program permits me to write many letters.

Many times I have to wonder about things we go through to have the simplest things done I mean come on if I was looking for sniffing glue in order to get high I probably have 50 people lined up ready to sell me some!


Update!

After numerous calls I finally spoke with a customer service representative who knew what I was talking about. It comes down to this, "this type of cushion cannot be repaired "it's made of a different material they have no patching compound other than the patch you receive when you first purchase the cushion. Be forewarned if you purchase one make certain you can obtain patching material in the future because it's only a question of time before you spring a leak.

I think I got it !

Much better don't you think ?
Thanks so much
Here is one of my macro pics

Wishing a pain free day to all.