I had to enter a date

[Kelly5538]

As much as we knew that the ALS second opinion diagnosis was coming, when the dr said it on Tuesday it took my breath away and I have had a hard time not crying ever since. I finally put a date in my user info here.... It broke my heart to do it. Original diagnosis was November last year - second opinion diagnosis was Tuesday. I've taken the rest of the week off, to look at paperwork - to talk to the kids schools, etc. I'm hoping (and I'm sure I will) to take this little bit of time to be sucky so that I can be strong and supportive for Scott and the girls. But I'm so scared.
Scott began seeing doctors last Spring (when baseball season started and he had trouble practicing) and has slowly declined since. He now has very much trouble with walking and has fallen a few times, his left arm is completely useless, and the scariest part for me is that his voice is very rough and raspy and he has choked a couple of times trying to swallow pills. This seems quick to me, is it?
One question though, the doctor this Tuesday said something about for Scott it's obvious that it's the nerves from the brain, and not really from the spine that are affected. As much as I google, I can't figure out what that means? Of course I was too shocked to really ask much while there.
I'm hoping to get support here - I'm a private person (as is Scott) - and so for me it's much easier to "anonymously" vent/talk/cry.
We have two beautiful wonderful daughters (16 and 11) who's lives will be changed forever from this.

 

[Nikki J]

So sorry.
It sounds like he was saying he is upper motor neuron dominant. Does he have spasticity and hyper relexes? Was his EMG not as bad as they expected? Upper motor neuron dominant can be sort of good news as those patients seem to progress more slowly often. Some of the longer lived patients I know are Umnd. No guarantees sadly

 

[Kelly5538]

He definitely has spasticity and hyper reflexes.

He did say the brain thing right after doing an EMG, so I guess that is how he knew that?

 

[scaredwifetx]

I am sorry. It's quite a shock when you earlier the words. You never have to worry about your privacy here. You can come here for any questions or support you need. Your family will be in my thoughts. The only advice I can give you since we are relatively new to this disease is to give yourself and family a couple of weeks to absorb all of this before making to many decisions. I went into overdrive in the beginning and spent every waking and sleeping moment dreading things to come and trying to get prepared. It almost did me in. The first month or so is so hard and the best we can do is spend quiet time with our loved ones. Please also contact your local ALS Association. They can guide you in the beginning and can even send out a support contact to speak with you. They will also send you tons of info.

There seems to be a lot of breakthroughs lately and a new sense of hope for a cure.

Take care of yourself as best as possible and know there is support anytime you need it.

 

[Kelly5538]

Thanks. Yes, our doctor's office is fantastic and they are setting us up with the ALS Association here in Ontario. I'm a bit of a control freak so my thoughts are running a mile a minute about what we have to do to prepare and all that. I know I will calm down eventually

 

[SLAUGHTER1555]

Hi Kelly my PALS and I are fairly new to all this as well. And the first months are hard but for a lack of a better word it gets a lil easier, you don't react to every lil thing or change. I read up on as much as I could about ALS so when things changed I knew what I was looking at. Recognizing the changes still won't change how it makes you feel but you know how to manage it. You will have good days and bad days each day is different.
When reading all the information try not to focus on what they say the end result of ALS is or you will go crazy, I did that at first and man that was hard but then I stopped doing that ad focused on what we needed to do and how to help him. I will admit it's been something these 8 months but this forum has been a life saver like you won't believe! Whatever questions you have they have an answer or can tell you where to find it.

So now I hardly think of what the end will be, I remind myself that as a caregiver something can happen to us God forbid and our pals still be here. So that went out the window and we just deal with all the other things that come along with this disease. As I said I'm new to this too but I will share my experiences as a caregiver if you want to know anything.

Nikki is the best as Laurie and Tillie and Mike to name a few I'm still learning names but I see these the most in my threads. So lean on them they are great navigators on this forum. God bless be encouraged Kelly.

 

[lgelb]

Welcome, Kelly, and sorry you find yourself here. To answer your question about the speed with which different symptoms have developed, ALS can progress in fits and starts so it's best to address developments as they come (a little ahead of the game if possible, like getting Scott a rollator now and looking toward the wheelchair process) rather than try to predict.

With kids it is even more complicated, but they will be a great help and comfort to you both, and, while this changes their lives, it doesn't change your and Scott's ability to help them become strong, compassionate women.

Best,
Laurie

 

[gooseberry]

Hi Kelly, I am so sorry the dreaded day arrived. There is no way you can be prepared to hear the definitive answer. I have a now 13 yr old son. It is hard with kids but counseling is a godsend. It let's the kids get all the pent up questions, frustrations,etc out. We are here to help however we can. Steph

 

[pdcraig]

Hi Kelly, Sorry you and Scott find yourselves here. I remember getting that second opinion and how crushed I was. I didn't realize how much I was hoping the initial diagnosis was wrong.There were a lot of tears.
Judging from where you are, you'll probably be referred to the clinic at Sunnybrooke in Toronto or the one at Western University. Both are excellent. We went to Sunnybrooke, my PALS mother went to Western.
Do touch base with the local ALS society representative. You'll register your first clinic visit if not before. My PALS was diagnosed at the clinic and registered then. They were a such a help navigating through the reams of paperwork.
Another person to connect with, local CCAC representative. For us the two agencies worked hand in hand and were great about evaluations, assessments, equipment rentals and loans from the equipment pools and finally placement to a care facility when the time came. I honestly can't say enough good things about them.
You won't be dealing with the same people I did but if you need any help, I'll be happy to assist if I can.
I don't want to overwhelm you all at once but I can also answer some questions about CPP disability and ODSP. We did not have an easy time dealing with his insurance and the other two.
As Laurie has already said, because of how the progression is different with everyone, get equipment before you think you may need it. One of the first things we ended up with was a lift chair. Ugly as sin, 80's rust chenille, but great for helping with transfers from sitting to standing in the early stages.
You're in good company here. I'm relatively private myself, so being able to "talk" on the forum is great. I can always cry and type, I can't cry and talk. And you can do it at 2 in the morning when you can't sleep.
Give yourself and your family some time to adjust and when you're ready, we're here to help.

Paul

 

[Kelly5538]

Hi Paul. I do actually have a question about CPP. If we take CPP will it affect his work policy disability insurance?

 

[Kelly5538]

Oh and yes, we are with Sunnybrook. They have been great so far

 

[pdcraig]

Hi Kelly,

My PALS didn't have a choice about applying for CPP disability. Once he had been diagnosed and the paperwork was filed for long term disability his work insurance insisted he apply. What he got from CPP was deducted from his insurance. I doubt your husband's insurance company will be different with an ALS diagnosis. We had to fight with his insurance because ALS wasn't specifically mentioned in the coverage, Parkinson's was but not ALS.

The good news is you won't receive any less money, the bad is you won't receive any more.

One big stumbling block we ran into was that there are no funding programs we found that were tied to CPP, everything was tied to ODSP. ODSP only kicks in if your income is below a certain level. We got a lot of not wrong information but not exactly right information about all of that. It ended up costing me an extra $3000 the first few months my PALS was in care. I can expand on that if you need.

I'm hoping your money situation is better than ours was/is.

Get your husband his disability tax forms filled out and filed with Revenue Canada. There are some tax credits he'll be eligible for. Speak to an accountant as well. There are some income tax and savings programs sponsored by the federal government that may help. I attended the tax info session for people with disabilities the ALS society hosted in Durham. It was very informative.

The people at Sunnybrooke were great with us. Myrna is the go to person, knowing who to talk with and what direction to point you in for information. Dr Zinman is very good, Karen the OT is fantastic, Frances with the ATP program was very helpful and Jerry is Jerry. He just came to the care facility where my PALS is for an onsite visit. You're both in good hands.

Let me know if you need anything, even if it's a shoulder to cry on. I'll help if I can.

Take care
Paul