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konagirl

Active member
Joined
Oct 16, 2015
Messages
56
Reason
CALS
Diagnosis
04/2016
Country
US
State
FLORIDA
City
Jacksonville
Tomorrow will mark 2 weeks since my husband received his official ALS diagnosis. I feel like I have known for a while, but it sure didn't soften the blow. All of this has seemed to happen very fast. Our first clue that something was wrong was last September, 2015, while he was wakeboarding he was not landing a lot of his tricks that he normally can do very easily. He had no pain but something was off. We thought he would need some sort of surgery and he would be fixed and back up and running again in no time at all. It was Oct 1st that we met with the neurosurgeon to go over MRI results and were told "this is nothing surgical, you need to go see a neurologist so they can rule out diseases like ALS" Cue the google searches....Cue the tears. Every day since Oct 1 has been an emotional roller coaster.

My husband (Chad) turned 37 last month and we have been married 12 years. We have an 8 year old son and our daughter turned 3 two weeks ago. Chad is VERY active, not one to ever sit around and watch TV, he is always into projects....building things and playing with his "man toys" (4wheelers, RC crap, dirtbikes, our 1940 sedan....you name it and hes good at) Above all of that though, he is an amazing husband and father. This is earth shattering pain like neither of us have ever felt before and it is only magnified every time I look at our babies. Our son knows something is wrong with Daddy and that Daddy cant do all the things with him that he could before...but he does not know the magnitude of it all or the end result. Chad was originally diagnosed with PLS in Dec and that we told our son about, and he knew there was no cure, but we have not told him about the new diagnosis. I know we need to tell him, but I keep procrastinating, I want so badly to protect him from this pain. He got A/B honor roll on his report card last week and my mother in law gave him a card with some lottery tickets in it....while he was scratching them I was teasing him and asked if he could even imagine winning 50k and what would be the first thing he would buy. He said "I would go bribe a scientist to make a medicine that can fix daddy" Cue the tears. That's the hardest part, both us being strong in front of the kids and not breaking down into tears all day....maybe it's a blessing, forces some normalcy into our day, even if its fake it feels good. Of course our 3 year old doesn't understand any of it and just runs around dancing and singing all over the house, making us laugh still. She is a blessing too.

Anyway, this is where we are today. His main problem right now is the spacticity in his legs, he is still able to walk but the distances are getting shorter and he will agree to a wheelchair if we are doing something that requires a lot of walking. He trips a lot. His hands are getting pretty bad too. It started in his left, it is the worst, he can not hold a glass of water in that hand anymore. His right is quickly catching up. Its weird though, the weakness seems to be within his fingers all though he can still move each of them independently. I really want to get him on here. Hes doing good and we remind each other daily not to let our heads get too far into the future, be thankful for what we have right now, today. He is eligible for 3 clinical trials coming up at our clinic, we are meeting with the clinic coordinator tomorrow to discuss them but I have already read through all the contracts and we both feel like the phase 1 is calling our names the loudest. Hope helps us a lot.

Thank you for listening to me. My heart breaks for all of you. None of this is fair for any of us.

~Kelly (kona is my dog, bad choice in a user names)
 
I forgot to mention, when we were at our appt on 4/14, Dr Boylan had a lady come in who did a breathing test....which he got a 95% on. I don't really know what that means, but Dr Boylan said it is better than most people without ALS....so I was thrilled with that.
 
Hi Kelly,

I’m the PALS, not the CALS, so have a different take on things, but I want to reassure you there is life after an ALS/MND diagnosis. For sure it’s a different life than “planned”, but you can all continue living and laughing – not every day, of course, every person has bad days!
I was diagnosed shortly after my 38th birthday w/ a 3y.o. & a 5y.o. We still function as a family and 9 years on, the kids are happy, well-adjusted and very caring.

Your husband has youth, health & fitness on his side. Antispasmodic meds will help his spasticity. On what basis was his diagnosis changed from PLS to ALS?

Ells.
 
I'm feel bad reading your story. I think you will be surprised how well your kids will handle this. We have 3 very active teens that have done very well helping out and handling the extra needs. I found this site much later that you have so I'm sure you will find a lot of very useful information.
Matt
 
Thank you Ells, I hope my husband and I both can share your attitude one day, I know it is going to take a bit of time though. He is still agreeing to do things, we actually took our son to a concert the day after his diagnosis. We had purchased the tickets a month before and our son was really looking forward to it, there was no way we would let him down. Hes just sad :( Its hard for him, as I am sure it is you too, to be a watcher instead of a doer. Its an adjustment that will take time I'm sure.
He had another EMG on 4/14, that's what changed his diagnosis from PLS. He is on Baclofen and Diazepam since November, they really don't seem to help much.
 
Try Tizanidine.
 
I will ask about it when we go in tomorrow. Is this something he would take in addition to the other two, it would it replace them? The spasticity is a major problem for him, the Dr even said it is 9/10's of his problem right now, if he could just loosen up I think he could walk/move a lot better....he said he sees that a lot in the younger guys, were you this way? We do stretches every night.
 
Sorry to welcome you to the family.

Spasticity is increased muscle tone. This actually gives an appearance of more strength. Many people find that while meds reduce the spasticity (which is good), they feel weaker, and many people complain the meds made them weak or progress faster. But it's the reduction of all that tone which means the muscle weakness is more apparent.

I hope you get into the trial you want, really hard choice.

I think you will find the way to tell your children, you don't have to tell either of them more just at this moment. It would be hard, my Chris was young, but all our children were adults.

Live every day to the fullest of what you have now. You don't ever know with ALS. You could have many years ahead to enjoy with your children, but many progress fast as well, so don't waste a single day now.

Have you read the stickies? Don't feel that you have to read and digest everything at once, but know there are some resources up there.
 
Thank you, affected, I am sorry for your loss. Yes, I have read all of the stickies over and over again. I Have actually stalked the site for quite some time, posting questions here and there, but I have avoided this specific thread. Even when we got the PLS diagnosis, I somehow felt that posting in the "newly diagnosed "would make it all more ....real?
The info you just gave about spasticity made sense, thank you.
 
Hi Kelly,
Most people take baclofen or tizanidine, not both. Tizanidine interacts with caffeine, so take that into account. Heat and/or massage may help.

There are many dog lovers here, so don't forget to post a pic of Kona!
 
Kona I know just what you mean about actually posting in this section makes it more real. The shock just can't be described to anyone else, but we all get it. The shock is just huge and it knocks you about something awful.

At least you've jumped that hurdle now and are open to the benefit of support here :)
 
Sorry for my 2-word post Kelly. The kids had come home from school – it was just gone 5p.m. here – so, that’s my cue to log off!

I take both Baclofen and Tizanidine. Both have different pharmacological properties and act in different ways. Getting the right dose of one and/or both takes time and is trial and error. It took me about 10 days and I tweak doses every so often. Tizanidine in even moderate doses, can make one sleepy and caffeine increases uptake of the drug, which is why I take both. He should discuss it w/ his doctor.
I also had Botox in lower legs in the early days which gave relief.

I also recommend aquatherapy. The warm water is good for relaxing muscles and input from a good PT can be invaluable.

Take care,
Ells.
 
No worries, Ells, I get it. We just left an appt and they told us to increase the bac from 60 to 80, the next step will be the pump which he said they see people get the most relief from in his situation. I asked about the botoxand he said they do too that there, may be something we look into elsewhere.
 
One of the reasons to try not to take both baclofen and tizanidine is that both are anticholinergics (as are many other rx PALS may take) and these are increasingly implicated in early cognition issues. The higher the dose, the higher the risk.

I'm not saying not to take both, but it's worth Googling the Magellan Risk Scale and seeing if you can swap some drugs out to try to bring your points down.
 
Thanks! Our Dr actually wants to see if increasing his dosage helps at all and then the next step would be the pump. I asked about the tizanidine, but for some reason he did not seem to think it would be a good fit.
 
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