Old 01-10-2019, 09:58 AM #1 (permalink)
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Default Girlfriend diagnosed yesterday...

I've known in my heart that this was als.
1 year ago she and I were snowmobiling. Symptoms first started around June. She needs help getting into my truck now, has slurred speech. And can not swallow a pill, but she can't open the pill bottle anyhow.

We are referred to mass general.

I have so many questions... Is this the correct forum?
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Old 01-10-2019, 10:00 AM #2 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

This is fine. Ask away! We do have some sticky ( important posts) at the top of the general subforum that you may wish to glance through too and there was a recent thread on mgh and the clinic
preparing for first clinic
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Old 01-10-2019, 10:28 AM #3 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Dennis, we’re here with you and your girlfriend. I’m so sorry about the diagnosis. It’s the hardest thing ever, but we’re here to support you as best we can.

At this point, deep breaths, lots of hugs, crying, it’s all ok.

Then, start working on financial affairs.

Medical equipment— work on getting that wheelchair chair for her safety and energy conservation. And probably a feeding tube very soon given her weight loss and difficulty swallowing. She’s probably dehydrated and will feel so much better once she gets proper hydration and nutrition.

It’s all about safety, energy conservation, and comfort, and many of those things can be improved upon.
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Old 01-10-2019, 12:49 PM #4 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Thanks everyone... Nikki thanks for the PM...it's gone now I can't see it. I'm sure as I post more i will be able to privately message. We don't have the Doctors name yet at MGH....I just know it's a very long name....

How do we deal with this terrible news? Do I seek counseling for her and I? I know she will have to go through the grieving stages... I just want to be able to make it all better for her...and I can't. Feel helpless.

What do we do when she can't get around any longer? She is still working with the exception of her falling on the ice and breaking her ankle... she is out of work until Feb 21st. Will she ever return to work? I kind of get the feeling she won't.

She can still eat and drink fine... it's just pills that get her... I got a pill crusher so that will help... What meds are commonly prescribed for this? I get that when she has difficulty swallowing she will need to have a feeding tube. And a wheelchair.

Are there any medication trials going on? I'm sure MGH will direct us here.

Who is going to take care of her when she can't walk any longer? I am a firefighter and a paramedic and a Respiratory Therapist but I'm in a financial pinch and have to work 72 hrs/week (3 24 hr shifts) to pay my bills and live. I can't use sick time because I have to have surgery on my hand in the next few months and will need to use it. Do you think her insurance will pay for home care? Do people with ALS go into nursing homes? I can't imagine her being placed in a nursing home.

I am pretty sure she has long term disability she can go on....not sure how long that lasts.... she has a lot of credit cards and such...

How long will she live? She has gone down hill badly in 7 months.

Do most people require CPAP and such? Do most get Trach's and home vents? motorized wheel chairs? I think if it were me, I would want to die in peace without all of this but I don't know how she feels. This is all so new to us.

I'm sure I will have more questions in the near future....so thankful for these forums.

Dennis
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Old 01-10-2019, 12:52 PM #5 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Dennis, there is still hope. As I read your post she has not yet received a confirmed
diagnosis of ALS.

Has she gone through the EMG/NCS series yet?

If not... there is still hope.
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Old 01-10-2019, 12:55 PM #6 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Al she had an EMG yesterday. They wrote “ MND” and referred her to Mass General. It is on the other thread
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Old 01-10-2019, 01:04 PM #7 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Ooops. Well with that "MND" referral... there is still hope of one of the other MNDs.

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Old 01-10-2019, 01:14 PM #8 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

I sent another pm but you can usually retrieve message by opening user cp which is on the top left side and looking down the list.

Meds- riluzole and since has bulbar issues nuedexta. They will likely discuss radicava.

Feeding tube if it desired early is best. People do use it just for meds sonetimes. You want it while breathing is good. And maintaining weight is critical. If eating is tiring she may need to supplement with a tube.

Lots of people do bipap ( not cpap ) for ALS some vent. Personal decision.

Some people work longer than others but she should consider her energy and what is important to her. A diagnosis of ALS means speedy ssdi and medicare ( 5 months after stopping work)

No one can say how long she has. Some defy all statistics- others seem to go quickly. We try to take things day by day and focus on quality and comfort. I know that seems impossible now.
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Old 01-10-2019, 02:13 PM #9 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Dennis,


This comment is the one that tied me to your situation - "I just want to be able to make it all better for her...and I can't. Feel helpless." I've always believed that one of my primary purposes in the relationship, between my wife (Darcey) and me, was to be her "Champion"... able to make all things that might go wrong, right again. For the better part of 30 years, I was able to do exactly that. With ALS, "Champion" did not go away... but it did have to be redefined... and has become even more important than at any other time in our history together. No longer can I "fix" everything. For me, that was a devastating realization. But I found that though I couldn't "fix" everything, I could find ways to make things easier, better, different enough to be acceptable. My wife appreciated that and I still felt a fulfillment of purpose. I know that you, too, will find those ways.


As has been pointed out, there are "stickies" that will help with many of your early questions. I would encourage you to read them and find those that give you direction for what needs to be done, today and tomorrow... and maybe for the next week or two. At this point in time, you'll both just need to catch your breath. While you may not yet recognize "how" you're going to do all of this, at least let her know that she won't be alone. And know that you won't be alone... as we'll be here every day to give you as much help and direction as we possibly can. Know also that if you could take a snapshot of yourself, today, you'll find a much different person at the other side of this journey. I'm still traveling our own path. And difficult as it can be, I have become a better person and still "like" who I am... or who I've become. I hope you find the same.


With enough posts, you'll be able to initiate PMs (Private Messages) to other members. If I can be a help, feel free to reach out.


My best to you and yours...


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Old 01-10-2019, 04:36 PM #10 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

I am very sorry to welcome you here. As you already know, it is a great place to be if you need to be here.

There are some wonderful folks who will provide answers to just about any question you have.

Know that you are not alone.

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Old 01-10-2019, 05:00 PM #11 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Welcome to the worst club on the planet. If you have to be here, it is a good place. Here you will find a great deal of advice and support. My first piece of advice is to stop working as soon as possible. Even the workaholic person I was working for said don't go from work to a wheelchair. Allow things to sink in, you will come to realize you are the same people you were 2 months ago. Lots of bad things are coming, but they aren't all happening today. Focus on today and what you can still do and DO IT! As far as equipment goes, do not be afraid to use it. The basic principle of equipment is that it keeps your world as big as possible for as long as possible. I can still walk short distances and around the house. Any farther , like walking around the grocery store or walking my dog, I use my wheelchair. It isn't that I am physically unable to do things, it just wears me out. The chair means I have energy for other things.

Counselling is something to look into, if you feel you need it. If nothing else you will get a chance to vent.

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Old 01-11-2019, 02:52 PM #12 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Welcome to our very exclusive club. It is unlike any other, because we are, too, unlike the average person.

Everything about ALS is bad news. It's hard work for the CALS, and harder for the PALS.

I'll give you my experience. Others may have different experiences.

She might live 8 months or 8 years. There's no way to tell in advance.
Doctors will tell you the standard party line: 3-5 years. But I wanted a more nuanced opinion, so whenever my PALS had already left the Dr's office, I would excuse myself, go back to the doc, close the door, and say: "I have to make plans for the family. I'm going to build a new house to accommodate my PALS that will cost a half-million. I'm thinking of moving my kids to a different school and arranging for private daily transportation for them. Tell me, doc, what do you really think?"

The doc shook his head and quietly said, "She won't last the year." With that, I could care for her better, I could budget the money better, etc.

Life can be good. Some PALS ski. Some travel. In her wheelchair, we took my wife out to eat, we went to parties, we saw the kids' soccer games. The American Legion even presented her with a medal during the awards ceremony in the middle school gym.

Hope. PALS need hope like anyone else. Since they can't reasonably expect a cure or even a long life, I made sure my PALS could at least look forward to a happy life in her months remaining. Plus, I assured her that our kids would be happy and secure on their way to college.

I made it my mission in life, all day every day, to anticipate her needs and prevent problems, big or small. I got A LOT of advice by reading this forum.

Important: Is she a veteran of military active duty? Makes a difference.

One big, hairy decision she'll need to make is about tubes. Feeding tube and breathing tube. There are many pros and cons. One of the effects is that tubes can keep her alive longer. But that life might be paralyzed in a bed staring at the ceiling for years, unable to communicate, waiting for a family member to pull the plug.

Some PALS have told me that, although they were completely paralyzed, they still had a quality of life and wanted to continue to live. I can't imagine that for myself, but I believe them and support them.

My wife decided against tubes. No feeding. No saline drip. No trach. She would have lived longer, perhaps, if she had tubes. But she didn't want to live like that. She ordered, in writing, that if she ever couldn't breathe and needed air, we were to give her morphine instead. (The morphine would eliminate the panic one feels when you're lacking oxygen.) She lasted 9 months from first symptom to totally locked in, unable to even blink to say yes or no. She was in that condition for just one day before she passed. During that day, she was pretty highly medicated, so I don't think she felt scared about it at all.

Everybody makes their own decision.

Someone needs to wipe her bottom. Someone needs to scratch her itches. She'll need frequent leg massages to relieve the pain of immobility.

Friends and family don't know how to handle it, and feel uncomfortable. Many will just disappear. She might need a van with a ramp and someone to drive her.

It's hard, expensive, sleepless. And at the end, she's gone. My advice here is this. We know that ALS will destroy one life, all you can do is ensure it doesn't destroy two lives. So be sure to plan for a future life for the survivors, too.

My biggest advice is to help the PALS get her wishes. That's the best thing you can do for her, I think. What she wants, she gets. I never tried to talk her out of anything. Even if you know better than her, even if you think she's wrong or "just being emotional" I would smile, say yes, and do my best to follow her desires.

That's hard advice to follow. But, however, put yourself in her place. If I were dying and I wanted something or made some decision, and then someone else over-ruled me, tried to disagree or used my helplessness to counteract my decision. I would be LIVID. If I'm the one dying, then I get my way, period. That's my advice. Some will disagree.

Frankly, ALS is not your problem. It's hers. You could just leave her. It's her problem and you're not married to her. If that's your decision, I personally ask that you be honest about it with her, and help her make other arrangements for her care with her parents or others. My PALS lived her final months in our living room in a hospital bed, so that all the family would be near her all day. We positioned the bed so she could see and operate the TV and speak easily with us all. I put all the "hospital equipment" right behind her where she couldn't see it but it was ready for any emergency. I bought a generator and a window air conditioner in case the power went out. I slept next to her in a cot, touching her, whenever I could catch a nap.

We in this forum have been through this many times, and we know the solutions to many problems. Sometimes there are no solutions in ALS. Don't be afraid to ask.

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Old 01-11-2019, 03:04 PM #13 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Just to point out as you well know there is a difference among tubes. The one that could potentially end as Mike says is the trach/ vent and there are choices that can be made to avoid that. Bipap and feeding tube may give her more time but I honestly view them as comfort measures. I am FALS. I have had fa mily ( mother) choose no feeding tube. It was horrible as she choked and struggled to eat. My sister delayed almost too long but once she had one her quality of life was better. - she agreed it was. My aunt had one but when it came out she refused reinsertion and went inpatient hospice where they made her last few days comfortable

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Old 01-12-2019, 09:02 AM #14 (permalink)
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Default Re: Girlfriend diagnosed yesterday...

Hello Dennis, a lot of good help here. As someone pointed out on another thread, (I think) you'll get a lot of different opinions and experiences on the forum, and you can take what seems helpful to you, and discard what doesn't apply. No one will question your experiences of this either. What I found immensely helpful, practically and emotionally, was and is this forum. You can really let it all hang out here. People are good and kind and helpful.

The other thing is my ALS Support Group, and here in Ontario, the local regional manager shows up at bedside or in your home and gives you good hard advice, support, information. They also help to provide equipment on loan. That's a big one...this mattress didn't work out? Try another. Don't need that wheelchair anymore? Try this one. A nice man delivers the stuff, and takes it away when it's no longer useful. There's an ALS Society support group which meets once a month here which is another safe place to share what you're going through with other people who will nod and know what you're going through, and be able to give support and advice. I'm pretty sure my PALS mother and I would be suffering a lot more if we didn't have those supports in place.

I used to be more independent and always liked to do things on my own. I'm getting good at asking for support. Otherwise my head would have popped off by now. Sorry you're going through this. It certainly does stink, but it seems to me like a bit of a balance between panic, living in the moment, and planning a few steps ahead. Knowledge and experience you gain from places like this can get you prepared for the steps ahead. And those stickies are great too. Best thoughts your way!

Kathy
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