MS walk

[Kiwi]

Don't know if this is permitted or not, figured it could be deleted if it's not.

For the first time I am sharing a bit of personal info on here.

Last year my wife Stephanie was diagnosed with MS the week of mothers day. It rocked us pretty hard, she spent 2 weeks in hospital barely able to move and couldn't get out of bed without throwing up. Things were looking pretty bad. Fortunately things settled down and we are very fortunate that she is on the lower end of the scale when it comes to MS right now. Unfortunately we live with the knowledge that that could change in a heartbeat and she could be wheelchair bound, unable to do anything for herself at any point in time, could be tomorrow, next week, a years time, 2 years, 5 years...anytime, which I can tell you now, no matter how hard you try to not let it, it gets you down a lot, especially when you have two young children.

So something has come up that I have decided to do in support of my wife and MS. There is a MS walk in Brisbane on the 17th of this month. I managed to clear my schedule and register to do this. My busted knee and shoulder have meant I can only do the 5km walk with the aid of my knee brace and a few pain killers, but it's something I really want to do. I have put a link to my page for the walk below and would appreciate if anyone decided to donate, it doesn't have to be much, every little bit helps. The money is going towards helping set up peoples homes and give them the tool/devices/equipment they need to help them in every day life.

Thanks in advance to anyone that chooses to help out.

https://msqldevents.com.au/champion/MS-Moonlight-Walk-2014/IanNelson

 

[Chicken_Hunter]

I have MS. The worst thing about it for me is the medication I have to take. I started with the injections, but they were the most painful injections I have had in my life. Equivalent to a bee sting both in pain and duration of the sting. Now I am on tablets that make my entire body turn red and it feels like I am on fire for about 30 minutes. It was worse when I first started them.

I was diagnosed after several bouts of numbness, the worst case was from my mid torso down to my feet. I guess my symptoms are pretty mild compared to others. I do find that I tend to drop things a fair bit and run into objects that I normally wouldn't.

 

[Kiwi]

What tablet are you on, my wife takes Fingolimod/Gilenya once a day. At the moment it may be messing with her kidney functions, we are awaiting tests ect.

My wife had stroke symptoms, her entire lift side when completely numb. She still has numbness in both of her hands and feet along with constant pins and needles. She had a few minor issues earlier on that we now think were MS.

 

[Chicken_Hunter]

It's called tecfedira. It's relatively new so long term side effects still aren't known. You really have to be strict with it tho so your body adapts to the side effects. If you miss a couple days the side effects are back to square one.

 

[BunniesMan]

Very good cause mate. Best of luck.

 

[Kiwi]

It's called tecfedira. It's relatively new so long term side effects still aren't known. You really have to be strict with it tho so your body adapts to the side effects. If you miss a couple days the side effects are back to square one.

Ouch.

With Fingolimod when she first took it she had to be in hospital and under a 6 hour observation. Obviously she needs to take them daily, but she could stop tacking them for two weeks before she would have to start the process all over again which she had to do for about a week while in hospital a month ago.

 

[Chicken_Hunter]

Ouch.

With Fingolimod when she first took it she had to be in hospital and under a 6 hour observation. Obviously she needs to take them daily, but she could stop tacking them for two weeks before she would have to start the process all over again which she had to do for about a week while in hospital a month ago.

Yeah when I first started the needles I had the option to that medication but opted for the needles. 6 months later tecfedira came out so I went on that and you don't have to go to hospital and be hooked up to a heart monitor. Might be worth a switch when she next sees her neurologist.

 

[veggiepatch1959]

My missus was diagnosed with MS about eight years ago, two years before I met her. She spent over a week in hospital with symptoms identical to the OP's wife.

During our time together, she has been administering Betaferon injections but gave it up for about 18 months in 2011. Honestly, I can't see what benefits Betaferon offers. Plus it leaves the most ugly bruises.

She has her good days and bad. It mostly affects her mobility and fine/gross motor skills and sometimes incontinence. Sometimes she will walk like a duck or like a drunk but always veers to the left. I don't know how many times she has run me into other shoppers while trying to keep her steady.

Never fill her cup or glass up too full - you or her will end up wearing most of it. We've even gone to the extent of buying special spillproof mugs to stop her burning herself.

Life goes on.....

 

[Kiwi]

My missus was diagnosed with MS about eight years ago, two years before I met her. She spent over a week in hospital with symptoms identical to the OP's wife.

During our time together, she has been administering Betaferon injections but gave it up for about 18 months in 2011. Honestly, I can't see what benefits Betaferon offers. Plus it leaves the most ugly bruises.

She has her good days and bad. It mostly affects her mobility and fine/gross motor skills and sometimes incontinence. Sometimes she will walk like a duck or like a drunk but always veers to the left. I don't know how many times she has run me into other shoppers while trying to keep her steady.

Never fill her cup or glass up too full - you or her will end up wearing most of it. We've even gone to the extent of buying special spillproof mugs to stop her burning herself.

Life goes on.....

Life certainly does go on, some days are better than others, but our two children certainly make every day an event to be cherished, even when they stick my wife or myself in a time out for swearing.

 

[Chicken_Hunter]

My missus was diagnosed with MS about eight years ago, two years before I met her. She spent over a week in hospital with symptoms identical to the OP's wife.

During our time together, she has been administering Betaferon injections but gave it up for about 18 months in 2011. Honestly, I can't see what benefits Betaferon offers. Plus it leaves the most ugly bruises.

She has her good days and bad. It mostly affects her mobility and fine/gross motor skills and sometimes incontinence. Sometimes she will walk like a duck or like a drunk but always veers to the left. I don't know how many times she has run me into other shoppers while trying to keep her steady.

Never fill her cup or glass up too full - you or her will end up wearing most of it. We've even gone to the extent of buying special spillproof mugs to stop her burning herself.

Life goes on.....

That medication was brought up by the neurologist for me, but she didn't recommend it. Copaxone was the top choice from her, but it's a daily injection.

From my understanding all the medications do is prevent frequency and severity of attacks.

 

[Mr Angry]

Went to a trivia night last, they managed to raise over 3k for the MS society.

Was a good night, and a great result for small group to raise that much to help.

 

[Kiwi]

top effort there

I'm up to $440 so far after a few days, if I can keep it going will definately hit my target of $1000 and may get close to $2000 plus...

 

[Parra]

Top effort kiwi. Tough story, good to hear your wife is going OK.

 

[Kiwi]

Thanks for the donation ( I'm guessing from Parra )

and thanks for the kind words Parra