Strokes aren’t contagious

Hi.  I’m back again and today I’m going to talk about something that really bugs me. It has to do with friends and how they react to your stroke.

When I first had my stroke I don’t remember the first two weeks or so.  I have relied on my wife and my mother to tell me what happened during that time.

One of the things they told me was about all the friends that came to see me. And then there were some after I started remembering things.  It was awesome to have that support. There was nothing like seeing friends.

Here’s the thing. I didn’t see about 85% of them ever again. Not in the hospital. Not in rehab. Not when I went home. There was the odd one I saw twice but that was it. What started out as what I thought was a big support group turned out to be a very heartbreaking moment in my life when I realized they were gone.

I am not sure why they left. During the first six weeks or into into my stroke I was really out of it. As time went by I could start forming complete sentences. I was still paralyzed on one side of my body. Something I don’t think is going to change although I’m trying my best to work on it. I was in rehab for about 3 1/2 months. In that time I probably saw about five friends. I can’t remember exactly how many. I only had one aunt and uncle who came every week to visit me and of course my wife. For 3 1/2 months.

I have five people that I consider my true friends. I’m in Winnipeg Manitoba. Two of my friends live here. Two live in Thunder Bay Ontario and one lives in Vancouver. That’s it. That of course doesn’t include family. Five friends. Out of the dozens I had before the stroke.

I consider the ones that abandoned me my “fake friends“.  That is because that’s what they are. These are the people that I thought I could rely on. People that would be there to help me through my ordeal.

I thank them for coming to visit me at first. But I also am really really pissed off at them not being there after. I have always supported my friends when necessary. All I wanted was the same treatment.  Having a support group behind you when going through something like this is very important. There for the good moments but also there to comfort you through the bad.

As you can tell if you’ve read the rest of my blog I have had a great attitude through most of my stroke.  I still have that attitude and I’m hoping I will until the day I leave this earth. This particular topic however is one that is not one of my good moments. It doesn’t bother me anymore, at least not as much as it did at first. I have those close friends that hopefully will be there forever. The rest of them, well I hope they never have to go though what I did.   But if they do, I’m sure they’re going to find out who their fake friends are and maybe then they will understand

Strokes aren’t contagious! I hope your friends realize that and don’t treat it like it is.

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An update

It’s been a while since I’ve written in the blog. I’m not sure why I haven’t but it’s time for an update.

First of all my dog passed away. He was a great dog except for the fact that he started biting in the last couple years. He had a lot of medical problems and when I think back I think the problem was something to do with his Health. We miss him with all of our heart and he’ll always have a special place there. He was a Great companion that gave me someone to talk to during these long days.

 

Then along came Bentley. We got him two days after Jack was put down. Some people may think that was too quick but I needed something to occupy me during the day and he was the perfect companion. We got him as a puppy so we are dealing with all the things that come with having a puppy. He is very mischievous and sometimes not in a amusing way. He’s a puppy so he should grow out of most of these bad habits. Now that it’s spring we’ve started taking him for walks and he really enjoys it.

On another note I have started A kidney stone garden ;). I’ve had two operations so far to get rid of two Stones. And I have another one growing. The first Stone ended up taking up my right kidney. The surgeon said I was lucky that it didn’t do any damage. They had to go in through my Side, cut into my kidney blast it and suck it out. The surgeon said that it was one of the bigger ones that he has removed. The second one was about The size of a piece of rice but got lodged in a bad place so they had to go in and blast it. They did the operation on Christmas Eve but I was out by Christmas day. Why can’t these be diamonds. I definitely would be rich.

We have been in our new condo for about eight months now. As much as I miss our old place the condo is great. It’s easy for me to get around because there are no stairs and it is open concept. We are also very close to my wife’s family so if there is an emergency or they want to visit they’re only five minutes away.

We also have traded in our vehicle which was an SUV for a mini van. We put a lift in the back so that we can put my electric wheelchair in the back and go places. In the condo I use my cane to get around, but if we are going to be out I use the electric wheelchair so my wife doesn’t have to push me and I can get around much faster.

The lift was about $3800 and works very good. I recommend looking into this option if you’re thinking of doing any kind of modification to your vehicle so you can put a wheelchair in it. If you can to walk with the king to the back of your vehicle this is a very cost efficient way of bringing your electric chair wherever you have to go. If you want to know more about it let me know and I can talk to you about it.
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And another note is that I am still having seizures. They seem to come every 6 to 8 months or so. They are usually three placed close together and then that’s it for another 6-8 months or so. My neurologist has given me Ativan to try to take when a seizure comes on. I am not sure if I’ll be able to get the pill into my mouth before the seizure comes on but I’m sure as hell going to try. Apparently it helps reduce the seizure so that the affects are a lot less severe. I have a type of seizure called a Grand Mal. Basically it’s the kind you see when the person is jerking around and usually loses consciousness. I don’t lose consciousness all the time but it is a terrible thing to go through.

As far as the paralysis on my tight side nothing has changed. My right Side of my body is paralyzed except for a enough mobility in my leg to use a cane to move around my condo. After that it becomes tiring and physically challenging to go farther than that.

As far as my mental disabilities there has been a little bit of improvement.  My memory has improved a bit.  I am starting to remember future appointments.  I still can’t write but I’m going to try to improve that.  My writing skills with the laptop are still challenging.  I will type the same word a couple of times and then I have to go back and repair it. Sometimes I don’t see the problem until I’ve written a bit more.  This is one of the problems I will have when I try to write.  Trying to correct it when you’ve already written more is very hard to do vs. typing.  This is why I type instead of write.  I also use voice to text tech to write where ever possible.  It is faster and a bit more accurate then me typing.

This is a good place to end this blog entry.  I will try to update it more often but we see how that is been going.

Darcy.

 

Hello Again

I am back.

It’s been a long time since I wrote in this blog.  I’d say that I have been busy, but that’s not true.  I have lots of time on my hands, but I have been focusing it on other things. 

Anyway, here’s what has been happening in my life:

  • Still waiting to find out when I will get the surgery to remove the great big kidney stone (someway between the size a quarter and a looney).  It’s been over 5 months and still don’t have a date.  It is effecting my walking because of the pain.
  • The PC’s won the election and one of the promises made was a stroke unit in Manitoba.  I plan on being a pain in the ass to them until it gets done.  You should see more blog entries about this in the future.
  • I have a lump on my “bad” foot on the bottom that has started hurting a lot.  I went to a orthopaedic surgeon and he told me it was from the muscles in my leg contracting and causing the lump. He wouldn’t cut my foot off like I requested (a joke) and said that instead I need a new brace for that foot. That is the one that I have to wear every day so I can walk with a cane. He said that the place I was using for my brace was not that good and has wrote me a prescription to get one from what he says is a awesome place.I guess I’ll find out. That surgeon must’ve been in 80 years old, and I’m serious about that.
  • After seven months of not having a seizure I had two in one month. They were the worst ones since I had the stroke and both were in the morning. We have significantly upped my seizure medication to see if that will help. So far so good. It’s been about a month.
  • I have not been able to do any kind of exercises because of the reasons above. My walking has gotten A little bit worse. I also have lost a lot of mobility in my being able to lean over. I’m hoping that I will get the surgery and brace soon so I can resume my exercises.

And now the good news…

We bought a condo and sold our house. We are doing this because it will be much easier for me. I have an electric wheelchair and I will now be able to go places on my own.  It is a handicapped friendly condo with doors that automatically open and no ramps.  The person who sold it to us told me they could put a Rail in the exercise room so I can go up there for my exercises. I can also use the hallways to practice my walking.

I really know how much my wife has given up to do this and I can’t tell you how much I love her for doing it. It was a big sacrifice for her and I appreciate what she’s doing .  The condo is a little smaller than our house (200 square feet smaller).  That means a significant amount of downsizing and selling furniture so we can have furniture that will fit in the condo. It is a brand-new condo and is very nice.  The house we are in we built and was supposed to be our forever home but circumstances have prevented that. We’re going to miss this place but I’m sure we will love our new place as soon as we get used to it.

That’s all I got to say for now. You should hear from me again soon as I want to keep this blog up-to-date. Good bye for now and I hope you all have a safe summer!

Some (dollar) statistics about (my) stroke

It’s been a while since I last  wrote a blog entry so I thought I’d finish one of the many ones I had started. This was one I had started to write about a month ago.   It’s about the cost of treating a stroke and what I think it cost to help me.   I think you’ll find this very interesting.

I found an article on CBC (Here) that says the average  cost per stay of  A stroke victim in the hospital is $11,260 .   This article was written in 2008 and was based on statistics from 2005. That was over 10 years ago.

If I am reading that correctly  (and my reading is not that good yet) that is the average cost. I had a very severe stroke ( The doctors did not think I was going to live)  so if that is the average then  my average daily cost could be higher.   For the purpose of this conversation I am going to use the average of $11,260.  I will assume a stay is 5 days.

I spent about 48 days in Concordia.  What I am about to say shocked me.   based on that average it cost $112,600 for my stay in Concordia.  Once again I’m using the average for every day I was in the hospital. It could have decreased  as time went on but regardless that is a serious number.   It costs more to look after me then someone with cancer ( no amount given but it is the fourth on the list).   The cost of looking after me really humbles me. That is an incredible amount of money to spend on one person. Our medical system may have it’s  problems (cost  of treatment is one of them)  but when I needed them they were there.   They are heroes in my eyes.

This number does not even include the 3 1/2 months I spent in a rehab facility Learning how to  walk with a cane.   It also doesn’t  The year and a half of  therapy I got in my home after coming home from the rehab facility.  I  don’t have a statistic for the cost of the rehab facility but even if we use a number like $1,000 per day that’s approximately $100,000 (100*$1,000)  for the facility and another $30,000  in rehab at home.

That’s $242,600 so far in health expenses to keep me alive and able to live in my own home.    There are a lot of other expenses, mainly paid for by insurance or myself but they pale in  comparison to what the medical system has paid.

It’s important to note that some these numbers are just numbers I pulled out of my ass but I think are reasonable amounts. As a matter fact I think the numbers are higher than what I am estimating. What is definitely  obvious is that it took a shit load of money to bring me back to where I am and I am so grateful.

 

 

 

 

 

2 years ago today

Today is the second anniversary of my stroke.
Two years ago at this exact time I was still feeling “normal”. About three hours from now I was lying on my floor paralyzed.  2 days from now I was fighting for my life.  New Years Eve 2013 was the worst day of my life.  January 1, 2014 was the best day of my life.  I had looked death in the eye and told it I wasn’t ready yet, and started the uphill climb to where I am today.  And i’ll continue on that climb for the rest of my life – but that is  not as bad as it may seem.   I’ve learned a lot about myself  and what I’m capable of, and I’m very proud of what I’ve done so far.   The doctors didn’t think I would survive the night and I did.    Then they figured I would be in a home for the rest of my life. I am – but it’s my home and not an institutionalized one.   I still have problems and  i’ll have some for the rest my life, but what those problems will be I’m really not sure yet.

But that’s OK. What happened, happened and I have accepted that.  As far back as I can remember after the stroke I understood that my life would never be the  same.  I think being able to accept that as soon as I did has made the transition to this new life a lot easier.  My wife often tells me she is surprised that I have such a positive outlook after all I have been through but the fact that I’m here today to write this it a perfect example of why I have that attitude… I am here and not just a memory.  So don’t ever feel sorry for me because that would really hurt Me.  I have never felt sorry for myself and no one else should either.  Instead, look at what I have accomplished and feel proud of me.

So here’s to another year.  It will be a good one, just like the last one was.

So have a happy new year and I’ll talk to you on January 1, when I have more to write.  Be safe.

 

 

In case you missed me in the news

I was on the CTV evening news on December 7 ( clip no longer available ) about 4 minutes and 45 seconds in.

And in print in the Winnipeg Sun ( clip no longer available )

Both articles talk about the importance of a Stroke Unit in Manitoba and how all 3 parties have promised to set one up if elected.

Making an election promise is one thing.  Doing it if elected is another.  I plan on making it my priority to try and make sure it happens.  Can you help?

I also plan on asking the NDP why, if this is an election promise, don’t they start putting the wheels in motion now instead of waiting for the election.  This is an important issue and the sooner it starts the sooner we can start saving the lives of stroke victims.

Darcy

It can’t happen to me…

** This post is not the kind of post I regularly make, and I went back-and-forth about whether I should write it, but I think it’s very important lesson to share.  You’ve been warned. **

It can.

It doesn’t matter what kind of physical shape you’re in, or any other factor, it can happen to you. There are different factors that can make the likelihood greater such as your weight, whether or not you have diabetes, smoke etc. but the bottom line is strokes can happen to anyone, anytime.

I’m not saying that you actually say those words or even think that but when you come across someone who’s had a severe stroke like the one I had, you probably look at them, feel sorry for them and probably don’t even think that you could be in the same situation.   You can.   

When I was in rehab there was a younger person, probably in his early 30s who had a stroke that, from what I could tell, only affected his speech. For the whole time I was there he did not utter a single word (that I can recall, but my memory is very sketchy of that time).  We both had physiotherapy at the same time so while I was trying to learn how to walk he was in there doing things like jogging and lifting weights. Think I couldn’t  even do before the stroke. Yet he he was in there trying to do it as much as he could to recover from the stroke.  Riverview (the place I went to do my rehab) is not somewhere you get placed if you have a mild stroke so whatever happened to him must be on the inside, because on the outside  he looked just fine.  

There were other people both younger and older (mostly older) in rehab with me that if you looked at them would wonder what it was that caused them to have a stroke. 

So next time you see somebody that’s had a stroke, and there’s a lot of us, please remember that that can happen to you. Every day in Manitoba six people are diagnosed as having a stroke. 15% of the people who have a stroke in Manitoba are likely going to die. That’s a very scary number.  I was on the brink of being in that 15% but we must’ve hit our quota for the month and I was spared. 

There is an election coming up and all of the major parties have said that they will fund a stroke unit in Manitoba. This is a good thing. Hopefully that will bring that number down.

So remember it can happen to you.  The odds of you not having a stroke are in your favor, especially if you take care of yourself, so do.   I sincerely hope you never have to go through the agonizing pain and suffering of having one because it sucks (I don’t remember the first two weeks of my stroke so I guess I’m lucky).

 And now I am going to go back to my positive attitude.  It actually sucked to write this post.

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Heart and Stroke Foundation Stroke Unit Campaign 

http://www.winnipegfreepress.com/local/Manitoba-a-bad-place-to-suffer-a-stroke-report—262108381.html
This article is still accurate. I had my stroke before this article was written and to this day nothing has changed. I was in Riverview (The rehab place mentioned in the article). They have 30 beds available. I occupied one for over 3.5 months. 

The Heart and Stroke Foundation has started an e-advocacy portal to make it easy for Manitobans to send a letter to their MLA outlining why a Stroke Unit would be beneficial here. If you’re from Manitoba I highly encourage you to go to the portal and send a letter to your MLA. I would consider it a favour to me and a favour to any Manitoban who has a stroke if you would do this. You might even being saving your own life someday! 

Some interesting facts:

For every minute delay in treating a stroke, the average patient loses 1.9 million brain cells, 13.8 billion synapses, and 12 km of axonal fibres (Saver, 2006).

Each hour in which treatment does not occur, the brain loses as many neurons as it does in almost 3.6 years of normal aging (Saver, 2006). 

It took them two days to finally stop the bleeding in my head. Those two days definitely did a lot of damage to my brain. I don’t know if the stroke unit could’ve help me in my case due to the severity of my stroke but I sure would’ve liked to have found out.  

Click this link to send a letter to your MLA telling them to build a Stroke Unit in Mantoba.

http://takeaction.heartandstroke.ca/index.php#/take_action_steps.step1/Manitoba/campaign/5

Darcy

Seizures

(This is a entry I started a long time ago and just finished today)

Something that I suffer from from but have not talked about so far is seizures.  I suffer from them.

My first one was just after the stroke.  December 31, 2013 to be exact.  This was when they discovered that the bleeding in my brain had not stopped.  Two doctors and a surgeon signed off that there was no way to stop the bleeding and I was dying.  Nope.  Nada.   The next morning (January 1) I woke up and start on the long  road to recovery.  I like challenges and I wasn’t about to let some doctors tell me I was going to fail this one.  What do they know any way?  😉

My second one was in rehab.  At supper in front of 29 other patient plus some staff.  I didn’t know I was having one until I woke up with a bunch of nurses and Doctors around me.  It was a gran-mal seizure (the worse kind).  

My third one was my first at home.  It happened around 6 pm.  I just finished supper and was face timing my mother.  Within 10 seconds of her answering the seizure began.  She saw the whole thing on FaceTime .  My wife handled the situation very well, calling 911 and making sure I was ok.

My fourth one was exactly like the third.  Once again just before supper, and once again while talking to my mother on FaceTime.  I joked that my mother was causing them.  My neurologist assured me that neither my mother or FaceTime were causing them.

There was a fifth was but all I remember is that it was just before supper and I wasn’t talking to my mother.

We are trying to find a dose of anti-seizure medicine that will keep them at bay.  Hopefully they can do that.

Darcy.

Help!  I’ve fallen and I can’t get up!

A quote from a  TV commercial eons ago.  And  words I said on Tuesday July 7.  I wasn’t using them as a joke, but rather saying them to a LifeLine operator so they could tell my wife and send paramedics to my house.

I fell.

I had snagged my cane and did not realize it until it was too late.  Picture a person whose right arm and leg are rigid and then falls like a tree onto their right side.  They have no way to cushion the fall.  That’s what it’s was like for me.  It was the worst pain I have ever felt.  While I waited for the paramedics to arrive my   Dog stayed right by my side yelping at the door with a sound that I’ve never heard him make before.  I think he was calling help.  The last he saw me on the floor was when I had the stroke.  I was gone for 5 months after that.

The paramedics showed up and basically put half my body into traction.  They could not lift me because my right of my body cannot be used to lift me at any time and in this case we didn’t know how much damage was done to my right side so there was no way to lift me anyway until the ambulance showed up.  We then waited about 90 minutes for a ambulance with me on the floor looking at the ceiling.

After a uneventful ambulance ride to the hospital I only had to wait about 30 minutes to get me a bed in the emergency room.  (Usually that takes hours and the ambulance paramedics have to wait with me.  To me that is not right.  The paramedics should not be tied up with me.  They need to find a better solution)

After taking a TON of X-Rays they determined nothing was broken.  They then made sure I could walk and then sent me home.

I think the fall might of sent my recovery backwards.  Maybe a lot.  My right arm doesn’t move at all anymore.  Before the fall I had a little bit of movement that took a year and half to accomplish.  I hope that this fall didn’t erase that accomplishment.  Today is Friday and the accident happened on Tuesday. The pain in my shoulder seems to have increased rather than decreased.Edit

I’ll update this post as my condition changes.