My Mom

[Rounder78]

Hi All

My mother was diagnosed w/ ALS yesterday. Well technically she was told ALS on 5/11/15 at UW-Madison, but we wanted a 2nd opinion and received that at the Mayo Clinic. Shocked, disbelief and devastation are a couple things that come to mind. I am the middle child and the only one who lives in another time zone. My mom's started having issues 3+ years ago. Like many, she had every test under the sun, including a back surgery. I was amazed how many doctors she saw prior to those at UW-Madison and Mayo who never said a word about ALS. I guess I got worried when her speech started to slur (about 9 months ago, almost like she had a stroke). I am really not a blogger or overly an open person, but I don't know what to do, so I am here to vent and seek advice. My brother and I both asked the doctor about where she was in the progress of the disease. He wouldn't say, other than the standard 3-5 years. OK, well is that 3-5 years from today, is that 3-5 years from when the symptom started? Any insight would be greatly appreciated, because I think we want to be rational about this and know what we are facing.

So a couple quick questions, any answers would be great.

1. My Mom is terrified. The doctor didn't give much in terms of things to do, other than support groups. Should she look for these solely online? Local? Are there groups out there that go deeper than a blog like this where folks are interact on a more personal level (do people make connections like that one here?). I am just looking for the best place for her to spend some time being proactive (vs. the doom/gloom that is ALS).

2. As noted above, my Mom's speech is pretty slurred. She can walk with a walker, but the weakness started in the legs. Her arms seem ok, she does say her swallowing has decreased. I don't know if this slow progressing or fast (relative to initial complaints). Thoughts?

3. Obviously I am terrified for my Mom, but I am also really concerned for my Dad. He has been trying to do everything. I told him today that he can't take this on all by himself. He isn't real big on the internet, but are there forums or information out there that I can provide him. I know he is devastated and I want to be there for him however I can.

4. Middle child, living far from home. I am sure some of you are/have been in my boat. What in the world do I do? My two brothers are local and I am sure will do whatever they can, but I obviously can not be there. My Mom and I facetime all the time (mostly so she can see her 19 month old granddaughter), but I feel like I have to do more. Any advice on how to handle a tough situation from afar would be great.

5. Medicare / Supplement Insurance - My Mom is currently on my Dad's insurance, but will soon be going on Medicare. What does it cover? What should we look for in a supplemental plan? Concerns/Suggestions/etc?

I still don't think reality has hit me. I am going to see my Mom next week, I am sure it will hit then. If this is the hand that is dealt, I just want to do everything/anything I can to help a terrible situation. It's my Mom, I don't know what I will do without her.

Thanks for your time all..... I thank you all in advance for any responses/suggestions.

-M

 

[gooseberry]

First, take a deep breath. You have this forum where we all help and support each other. You can ask any question, nothing is too personal or gross. Someone will have been through it and will be able to offer helpful hints for you.

These first few weeks will be an emotional rollercoaster. The best place to start for I formation is the general discussion forum. At the top are a bunch of "stickies". They each work through a specific topic and will help you a great deal.

Next I would contact the local mda chapter or alsa chapter where your mom lives. Alsa comes out to do a home eval to see what her needs are...does she need a ramp,wheelchairs,shower chair,commode chair, medic alert, etc. They loan you this equipment.

Next, I would breathe deep again. This is a crazy ride. We are all on it with you in one way or another. It won't be easy but in many ways is quite fulfilling.

Know you aren't alone. I know many others will be welcoming you and offering advice. Steph

 

[Nikki J]

I am sorry. It is hard I know. No one can tell you a timeline because everyone is different and we also have both times of plateau and of more rapid progression. It is rarely linear. The three things that generally kill us are respiratory failure ( many of us use bipap or othe non invasive ventilation some try for dps ( diaphragmatic pacer) some chose an invasive vent) swallowing issues ( malnutrition choking or pneumonia from aspiration) for that a feeding tube is an option. If she is going to have one early on is safest and best, and lastky falls can be deadly so walker, orthotics wheelchair should be used sooner than later.

There are generally inperson support groups through clinic alsa or mda. Online there are a few forums plus facebook. People here have formed some close friendships that continue off line by email. Some of us have met in person. Private messages are an option after a number of posts. There are face book groups for both PALS and CALS

Your dad needs support for sure. You facetiming with your mom is going to mean more and more to her. Keep it up even when it is hard for her to talk

 

[Atsugi]

M: If indeed she's already had ALS for 3+ years, then it hasn't progressed rapidly. My wife lived 10 months from first symptom--that was rapid. No one can predict how long we will live, until the very last days when the end becomes obvious.

Keep in mind a couple of things: First, your parents are full-fledged adults and will make their own way through this disease on their own terms. Don't try to push your parents to do anything. The hallmark of this disease is that it takes away a person's choices--they can't choose to do much, and their choices become ever more limited, until they can't even choose to breathe. You might disagree with your parents, but it is their choice.

Second, don't focus on the disease (woe is me). People with ALS soon learn (we hope) to live day-to-day, enjoying each little moment they can, without dwelling on tomorrow (which may not come). Take your cues from your mom and simply help her with whatever she chooses to do day by day. When my wife had ALS, we simply gave her every little wish she wanted.

If your mother had work history, she has Social Security benefits. In that case, Medicare A (free of cost) will cover 80% of hospital-related matters and Medicare B (about $100 monthly) will cover 80% of non-hospital matters like doctor's visits. A Medicare supplemental policy is a good idea to cover the remaining costs not covered by Medicare A or B.

I hope this helps a little.

--Mike

 

[GregK]

Hi there M,

You should point both your dad and mom to this forum (it's not a blog, btw, but some members have blogs within the forum). Both PALS (Person/persons with ALS) and CALS (Caregiver to PALS) are active here and can give advise and support.

ALS Untangeled at ALSUntangled.com - Home researches various alternate treatments.

ALS TDI (therapy development institute) at ALS Research Organization | ALS Therapy Development Institute has a forum and provides services.

There is also a handy site at http://www.patientslikeme.com/
This site will allow you to track your progression and to research how various treatments have worked for other PALS.

Finally Diane H, A former nurse specialist in Neuroscience and an ALS patient diagnosed ** 29 ** years ago has a website, ALS From Both Sides, detailing both her learnings as a PALS and her experience as a nurse at ALS From Both Sides

There are also multiple Facebook groups:

• Living with ALS ~ for PALS only
• The Lighter Side of ALS
• ALS we are in it together
• ... And more

 

[Nuts]

M, you've already recieved some great advice here. Please know that you are welcome, that this is one of, if not the, best groups for sharing information and support that you will find. I would encourage your folks to join us, but know that some people cannot handle the detail that you will find here. Some of us have to leave periodically because it overwhelms, but then we come back to open arms when we are ready.

Acceptance and living the life that's available are two things that will help with the emotinal aspects of this journey. There is no escape, so comfort and safety are key. The stickys describe steps to take and equipment that your folks will need. As you can see, that Medicare supplement will be very important.

I know it must be aweful to be so far away. It sounds like your trust your brothers to step up, and that's wonderful (no everyone is so fortunate). You will find your place, your role, the things you can do to help. Research, like you are doing, is one. As Nikki said, however, it is there journey, and you may find that they aren't always ready for the deluge of information that you have to offer. Some things must be digested in small bites. You won't be able to address everything at once, so read the stickies and see if you can encourage your family to work on the most urgent needs.

Most of all, stay on FT. Our children used to joke that dad could never pass the phone off to me fast enough when they called, and he was always too busy with projects when they visited to slow down and visit. Not so now. He relishes his time with them: in person, on the phone, on Factime or Skype. The time you give your mom on FT will be far more valuable than you might imagine.

My heart goes out to you. This is a ride no one should have to take, but we will be here for you.

oh, you asked about the lighter side vrs the doom and gloom of ALS. This is a great place for that. There is more detailed info here than I've found anywhere, and you can search for topics as every thread is archived. On the other hand, this is also a wonderful social outlet, where conversations cover many topics other than ALS. I've on some FB groups that are also full of wonderful people (some of them are also here), but this one has the broadest range of interaction that I've found)

 

[Rounder78]

Thanks all for your replies. It's been a tough trying to wrap my head around this (for me and my family).

So here is an update and additional information/suggestions would be great.

We met w/ local ALS Chapter. She came out to house and I was able to FaceTime the meeting. Seems like they are there to help/guide the whole way. The most beneficial part was they have a presence at the treatment center (ALS certified) so if we don't understand something the doctor's say, they know our status and can talk to us about it (proactive).

My mom just went for her consultation at the local center and had meetings w/ all the disciplines. They did a very complete review of her history and our family history. To our knowledge, this is the first ALS case in our family. The doctor said there is no rhyme or reason to this disease and the chances of her children (us) having it are slim to none. I was surprised he would even go down that road, but I guess people must ask. It is just that rare of a disease.

She had a swallow test, pulmunary function test, met with a diet expert as well as occupational and physical therapist. I guess the most shocking and concerning thing was her pulmunary test came back at 51%. I think she had a test like 3-4 months ago and she was around 80%. Then came the disclaimer if they want to put a feeding tube in, it needs to happen now before she gets below 50%.

So I am confused. Since the DX, we have met w/ everyone to try to get things in order (financial, housing, in home care options, my dad's retirement, etc). But along the way, no one has told us, "this is where you mom is at" or "this is what to expect" or anything that gives us insight as to timelines. I find this strange, because we know we can't wait to do things but at the same time, the unknown of time is terrible. As I think I previously mentioned, her initial symptoms of drop foot and continued progressive weakness in her lower limbs starts some 3+ years ago. She can get around w/ a walker, but that is getting tougher. Now speech is slurred a bit and clearly she is having some swallowing/breathing issues.

I am just at a lost on what to tell my Dad to do because no one can tell us what to expect or where she is in the progress. I got home 2 weeks ago and am going back in 3 weeks, but is that quick enough? Do things snowball from here with a 51% reading? I guess that number shocked us/me and I think things are worse than they appeared (currently). I know I am over the place here, but any insight into anything would greatly appreciated.

 

[gooseberry]

If she wants a peg tube , she should go ahead and get one. The sooner the better because she will heal more easily, in general. There will be talk of a bipap/ventilator for nighttime and/or daytime use. This helps her breathing muscles not overwork and helps stabilize them, however, its no guarantee. It does give comfort because pals aren't air hungry.

Next thing I would ask about is Riluzole. This med for some slows progression. Sometimes they hit a plateau for a while or progress more slowly. Some pals can't tolerate it for a variety of reasons.

You want to read and understand what you can about the disease because staying ahead of it is important as far as supplies and comfort items.

 

[Rounder78]

Yep, they are on the equipment trail and the tube is scheduled to be put in (2 weeks), while she is able. Also received the RX for the meds.

I just wish we knew more. Every decision we go back and forth. Their house is not going to work, do we have time to build? Nothing is clear and that is so frustrating.

 

[gooseberry]

If you are not a vet, your mom that is, a contractor should be able to do a fair amount in a 6wk time frame. We are having a bathroom totally redone-new shower,commode,bidet,sinks,roll u der vanity, tile, etc. Several doors are being widened, windows are being replaced, the sliding doors,, all the flooring.new sidewalk with 2 landing areas. About $74k.

I have put hardware on the kitchen cabinets and installed roll out drawers. There is a certification for aging in place builders in florida. Your moms state may have something similar. They would have ideas. You could look at a stove and dishwasher with controls in front and a refrigerator with pullout shelves.

Outside of the house remodel, you will want a manual and at some point a power wheelchair. Alsa loans these. A vehicle that can transport them. Shower and commode chairs are also available thru alsa. A good blender for smoothies...just some things off the top of my head

 

[Nikki J]

Build from the ground up? No one can tell you for sure but if their house is not going to work you likely will need something faster by what you have said.
Progression is not linear for most so you won't be able to predict decline accurately. The bipap seems to stabilize or at least slow respiratory decline for some. In general plan on needing things earlier than you expect. Things can take time to get and when you need something it can become desperate quickly. Is she getting a power wheelchair? That sounds like it might be needed soon and they take a while.
Try to read the stickies. There is a lot to take in but they are written by people who have lived this
Did you or your sibling get a chance to ask privately for a prognosis? I know one of our members was able to get a more direct answer by asking away from his PALS and emphasizing I think need to plan.

 

[Nuts]

One of the many difficulties of this disease is that no two PALS are alike, so no one can predict progression. If the house is not going to work, your folks need to work on getting moved now. While they might have time, they might not, and the one thing you can be sure of is that your mom will never again be as strong as she is today. Time to build---that's a great question and one that I wish someone could answer. What are their other options? Can the current one be modified? I've seen some very creative things on this forum. First floor rooms can be turned into bedrooms. Portable showers can be used. Ramps and lifts might be less expensive than moving. Some of these things might also fill the gap while building a new home. There are no certainties; ultimately your folks just need to make a choice and then move on it. Do they love where they are? Emotional attachment can often be an important factor.

It sounds like your folks are doing the right things. Keep reading here--I can't stress how important the information I've gotten from this group has been. Read through old and new threads. I'm sure that you've devoured the stickies by now, but some of the general conversations and questions are also very revealing. Knowing what kinds of things to expect keeps me from over reacting when they do.

Good luck on the PEG surgery. I'm sorry it's come about so quickly, but I think it makes great sense.

 

[MaxEidswick]

>One of the many difficulties of this disease is that no two PALS are alike, so no one can predict progression.

just like pretty little snowflakes