Newly diagnosed on 5/10/2022

[NekoiStar]

Hello,

I was previously posting in the "Could this be ALS?" thread, but now I have been officially diagnosed with Bulbar ALS on 5/10/2022 so I decided to open a new one here.

I am grateful that the doctors had moved quite fast, I have worked with 3 different Neurologists here in Montana and have had all kinds of bloodwork done, CT, MRIs, and EMGs done. During my last appointment yesterday, the EMG showed heavy nerve recruitment/damage in my neck, shoulders, back, arms, and hands, with some mild signs in my legs (the doctor thinks that is just diabetic neuropathy at this time). The bloodwork for all other potential ailments came back normal/negative for any other condition that could cause it.

Since my symptoms started about 6-8 months ago with speech and swallowing and then have since progressed downwards they are calling it Bulbar ALS. I am still mostly functional, but I have bad arm weakness that is getting worse and I've been told that I will have (Estimated) about 3-6 months of limb motility until they are pretty much useless. I'm looking into eye gaze technology options so I can continue to communicate and hopefully be an advocate for this insidious disease.

I've already applied for SSDI, and my work does have a Short-Term disability plan that I pay for so that will help me for a while and I need to talk to my HR team at work to see how exactly the Long-Term disability works and if I can keep my insurance or if I will have to go on Medicare/Medicaid eventually. I'm also making arrangements to go and live with my father and hopefully get hospice/care workers eventually when I cannot function on my own anymore.

I have a road to travel down now, and I'm so scared of it... I know I have family and friends that are supporting me and I'm sure that most of what I need will be provided. I'm just scared of how fast it will progress and if I can find the will to live every day, not being able to talk, eat, or move like I used to. I'm so scared of myself right now and the potential burden I will be on my family. I'm so scared of being stuck in a body that is wracked with pain, sorrow, and frustration, I know that ALS is typically painless... but I've had a LOT of pain since this started and I fear for it coming.

I don't know what this community's rules are on fundraisers... but I do have one for helping me see my beloved in the United Kingdom before I progress too far to do so. If I can share it here, I would be appreciative, if not that is fine as well, you have all been a wonderful support in the past month and a half and I will always be grateful. I hope to be able to contribute more to this group's overall messages of hope someday and give peace back to those who are frightened and anxious as well.

Thank you so much for all you have done.

- Joanna

 

[Nikki J]

I am sorry it was confirmed.

being proactive with plans and equipment is good. You should research your health insurance options carefully. Medicare comes with ssdi but you need a supplement and a prescription plan too or if there is a medicare advantage plan that works that is an option. Access to supplements may be an issue as you are under 65. This varies by state. Unless your company pays your insurance premium medicare may be a better choice. Every state has ship counselors. Find out from hr if keeping your plan is a choice and then make an appointment so you find the best answer for you.

I am sorry fundraising of all kinds is strictly forbidden this includes even links to nonprofits that just have a donate button on an otherwise informational page. You will understand that everyone here has been impacted by the costs of ALS and if we allowed fundraising it would overwhelm the site. I hope you get to the UK or they get to the US

 

[lgelb]

I'm very sorry, Joanna. We will support you however we can.

It looks like Medigap (Medicare supplement) availability in Montana for those <65 is not required, so to make an apples-to-apples comparison if you are able to keep your coverage, I would look at Medicare Advantage (Part C) plans at medicare.gov for your zip code. However, if you go on long-term disability, I'd imagine your Medicare eligibility will make it at least the primary plan, and probably keep you from continuing corporate coverage. Your HR department as Nikki says can clarify your options before you talk to SHIP or go on line.

Best,
Laurie

 

[wishmobbing]

So sorry you have reason to switch to this subforum. I hope that you will find knowledge and support by this amazing group of people here whenever you need it. Thank you for telling your story here and updating us. It's really scary and there's just never enough time. It's good to talk openly about what scares you and how you feel about things. The better the communication is between you and your family, friends and health professionals, the more they'll be on board with the way you want to live and eventually die with this.

You are already onto things like your living situation and eye-gaze communication, perfect.
You might consider getting a PEG tube early on to have it ready in place the second drinking/eating/taking meds is too exhausting or dangerous. Ask yourself: "Could I still drink enough and swallow meds on a day when I'm sick with a cold?" If that sounds dicey it's a good plan B to have the PEG shortcut on a bad day.

I hope the pain will get better or can be treated well. It's unfair and annoying that ALS doesn't at least cancel pre-existing medical conditions.
In the end what it boils down to is quality of life.
All the best for finding funds for an overseas trip to see your love.
Just a month after his diagnosis my PALS and me rushed into a roadtrip vacation along the west coast. This was something we'd loosely planned to do in a couple of years, suddenly it was now or never. It was an amazing trip, we made some great memories and we met wonderful hosts and strangers. It was a good mixture of just living and having fun and at the same time having deep talks with the friends we had and made there that helped to come to terms with what's the new normal.

 

[KimT]

Hi, so sorry you were diagnosed.

Insurance can be tricky. You need it. I got approved for SSDI within a couple of weeks and chose to get Supplement G which pays for the 20% of part B that isn't covered. It's important to have coverage that will cover durable medical equipment. You will also need a drug plan which is Plan D. Your long-term disability will probably be reduced by the amount of your SSDI and any accrued pension payouts. Sometimes HR doesn't have all the answers so make sure you get everything in writing.

Be extremely careful about medicare advantage plans. The work differently in some states and are really private insurance that takes the place of Medicare. It all depends on your state. I crunched the numbers and was much better off getting a supplement for my Medicare, Part B along with a drug plan.

Best wishes on your trip. If you're on Facebook, you can start a go fund me account. There are also small grants through various organizations so make sure you contact your local ALSA chapter.

If your arms are weakening, I'd suggest a bidet toilet seat. I got a grant for one through my local chapter and another grant for widening doors through ALS Guardian Angels. Do a google on grants for people with ALS. The Gleason foundation works with PALS who are losing their ability to speak.

 

[lgelb]

By definition, Medicare Advantage is a private all-in-one-plan that does take the place of traditional Medicare + Part D + any Medigap supplement. There's nothing sinister about that in itself -- my husband had an MA plan -- but the important thing is to find a good plan if you go that way; you can find star ratings for each Medicare Advantage plan on the Medicare site, along with ratings elsewhere.

My point was, being under 65 in Montana, you may not have the choice to go the supplement route, and if you only had traditional Medicare, you would be out a lot of money every year since Medicare has no annual out of pocket maximum, whereas Medicare Advantage plans do.

 

[NekoiStar]

Hello again,

Thank you for all of your amazing advice.

I'm just trying to get as many things lined up as I can, my employer does pay for a 2nd opinion through 2ndMD so I figured why not get a 2nd pair of eyes to look at all of the results and work done to date and see what they think?

I'm not living under the hope that this isn't ALS though, and I'm crying so hard every day in hopeless sobs. I feel so bad that I am unsure of how I will live with this despite me working 8-12 hours a day making phone calls, typing, and trying to prepare myself with the knowledge and tools that will be needed. I have learned that my employer gives me 24 weeks of short-term disability and long-term for longer than that, but I will only keep my insurance for up to 24 months which they will terminate me (if not done beforehand).

My biggest fear though is that I am losing my voice and hands/arms first and that is a major form of communication. Thankfully my voice isn't too terrible yet, I just need a lot of water to keep it active, but my left hand is getting pretty bad, it's good enough to type still, thankfully, but there is very little strength in it for much else. I have another ALS clinic next month in early June and I've asked about starting the medication Riluzole today.

I'm just so scared, I feel like I'm already falling apart and my time to get work done is so limited... how does one enjoy life like this? Everyone keeps telling me to live each day, but when there's so little time to get the planning done... how?

I feel like a clock is just ticking away and every day I just bounce between feeling I can do this... and should I do something about it before I cannot?

I'm so sorry, I don't mean to be a downer... but it's just... so much...

- Joanna

 

[Nikki J]

things are overwhelming at first. It is such a shock and adjustment. It will be a relief once you have the details taken care of. 24 months of insurance is a long time. Are they giving it to you with the contribution they usually make? That is generous.
are you voice banking? I don’t see we mentioned it and if wished do it asap. The gleason foundation can help. It isn’t necessary to record as much as it used to be but still it can be tiring and so important to do early.

things do fall into place. Once you have your insurance planned your voice banked and a few other things you will feel less pressured. Each of us has a different path but remember you can ask for help - from your doctor, your local ALSA and from us. Some things are unique like your work and insurance but people here have been through a lot too so remember youcan ask. You can also search the site. And use the resources section ( in smallish bites don’t overwhelm yourself)

 

[swalker]

Shortly after I was diagnosed, I had to stop working and go on disability. That was one of the hardest things I had to do, from an emotional standpoint. I loved my work and worked with a wonderful group of people.

When I stopped work I found that I spent most of each day doing paperwork. It was amazing how many insurance phone calls and how much insurance paperwork there was. I was mixing that up with going to medical appointments, coordinating getting a wheelchair, finding a wheelchair van, figuring out if we had to move immediately, etc. It just seemed overwhelming at times.

It was good to step back and take a break periodically so that I did not lose perspective.

I was heavily supported by a variety of friends in my community and especially at my church. One in particular was a lawyer and offered to organize the disability claim for me. This was a great blessing!

My company had private disability insurance. That policy stated it would pay me until age 65, even through I stopped working at age 57. Once they deemed me disabled, it did not matter whether the company kept the policy or whether I stayed employed.

Be aware that many (probably virtually all) disability policies deduct what you get from social security disability income (SSDI). That came as a surprise to me.

Note that SSDI can be partially taxed, depending on how much income you have. The private disability insurance policy required that I apply for SSDI. If I did not apply for SSDI, they would assume that I would have qualified for SSDI and would have deducted the SSDI amount from what they paid me.

The private disability insurance company provided legal assistance for applying for SSDI. They were highly motivated to have me qualify for SSDI!

It was a bit sobering to be approved for SSDI so quickly, after I had read quite a few horror stories of seemingly disabled people being denied.

I kept health insurance for my wife and me by going on COBRA. We had to pay the full amount of our policy, which was very expensive (over $24,000 per year). I believe the rules have changed since I went through this, but I was not eligible for Medicare until some time after I went on SSDI.

I encourage you to coordinate closely with the folks at work. Seek out assistance from those around you that have specialized skills. And, be prepared for things to take a bit longer than seems reasonable!

Steve

 

[NekoiStar]

Hello again,

I'm so scared... I want to see my beloved at least once before I lose too much of my ability to do so. It's all I want, and it's all that's keeping my heart afloat.

I keep bouncing between... "I can do this, I can live with ALS" to "I just want to die before I lose everything".

Is this normal? I'm so desperate for some of my old life back before I started to lose everything.

I know that bulbar progression can be really fast, and no one can tell me how long I will actually have, but I'm so scared. Why did I have to get this thing so young? RIght after I find the love of my life and was getting things put together to be with them?

Why?!!!!

I'm sorry if I'm a downer...

- Joanna

 

[Nikki J]

I am sorry. You are right no one can tell you how long you have. I know several people with bulbar and slow progression. Being younger is a positive for longevity. So it is far from a given that you will have a quick course.

if going to the UK is a priority work on that however you can.

not knowing what you mean by getting your old life back I can’t give concrete suggestion but there is life after. Maybe you can’t do some things but I bet you can find things you can. Perhaps dedicate an hour or so each day for that?

 

[affected]

I'm really sorry too - there is no doubt this disease sucks and is a total thief. I lost my husband young, and I still feel like we were ripped off.

Can your beloved come to you? I just wonder if that would take some pressure off you as you are already dealing with the shock of diagnosis. It truly takes a month or two just to move through that shock and begin to work out how you are going to live what you have.

 

[NekoiStar]

Thank you all for your kindness and understanding.

Part of the reason why I'm going to my partner is that I already had my passport in the workings for longer and my doctors say that may be able to help me get it expedited if I can get the travel plans official. So I'm the one in the best position to get to him first before I deteriorate too much. He is working on his now of course, so hopefully, he can visit me later on once I've progressed and with me moving back to my Dad's home there is plenty of extra room for him to live with us for a while before he'd have to go back home to the UK.

I was wondering... is it even worth a 2nd opinion? I'm still pushing for it, but we've been quite thorough with the tests so far... lots of blood work, 2 EMGS, MRI of my head and neck. The primary diagnosis comes from where the nerve damage showed up, the recruitment of muscle, and the bulbar signs of my speech and swallowing (atrophy of tongue and facilitation as well).

It's just progressing so... strangely... it's like it's slowly creeping down from my head down... taking only some, but not all quite yet. I do seem to improve a bit with rest, but the EMG didn't show the signs of something like MG with the repeated shock tests, he said it was "Close" but not enough. I'm not... getting my hopes up that it's not something else, but I'm just young for this kind of ALS and want to make sure we turn all stones...

I think my other concern is that it was suspected as ALS almost a month ago during my first EMG and my doctors never once indicated they wanted to start me on Riluzole or Radacava... I know they are expensive medications, but my insurance can cover them, and even now... several days after the diagnosis they haven't even pushed the prescription to my insurance. I called on Friday to ask why we haven't and they should hopefully get back to me on Monday, but this... casts doubt on my care as if I do have bulbar I need the progression to be slowed as much as possible so I have as much functional time as possible to get all of my plans in place.

What are your thoughts on the 2nd opinion and my feelings? Am I being valid or am I just scratching at the walls hoping for an escape?

Thank you for your time and compassion, I know with you all and my support system I can make the best out of these lemons.

- Joanna

 

[Nikki J]

We always recommend a second opinion for everyone. Even if the first was given by an ALS expert. It is common for patients diagnosed at Mass General to get second opinions at UMASS and vice versa. The doctors at both are considered among the best in the country. Are the diagnoses often overturned. I don’t think so but there is value in confirmation and in hearing someone else’s approach to your care

i wouldn’t have thought riluzole hard to get. It doesn’t usually require a PA but if you are getting it from a local pharmacy they probably have to order it and it takes 2-3 days in my experience. Should you continue to get it locally you will probably have to give notice for each refill. The pharmacist should tell you. After initial prescription many of us do sendaway.

radicava even if they started the process instantly is more complicated as it virtually always needs a PA and currently it is an infusion to be arranged and different clinics handle the process differently. There may be someone who prepares the pa paperwork for the doctor’s review. In your place I would be very tempted to wait and go straight for the oral version though that will be a PA too. But it would be less burdensome

 

[KimT]

Radicava is now approved orally. That's great news for a bunch of people with ALS who are going through time-consuming infusions.

Joanna, nobody can give you a prognosis. My friend's neuro told him he was fast progression but he turned out slow. I've had this disease a long time and the one thing I know is that there is no "typical." Some have pain, some do not. Some with bulbar never lose their ability to walk for years. Some with limb onset retain strong breathing for years.

When I was first diagnosed, I was terrified. Then I started searching for people who had lived a long life with ALS. I came upon a book written by a man who lived 15 years. Yes, some go quickly.

I think everybody should get a second opinion. I got four. I just believed my presentation was too atypical.

Don't let this disease consume every minute of your day. Plan the trip.