My mom was just diagnosed

[JamieL]

Hi all-
My name is Jamie, and I just joined this forum and will go through and read. I've just started this process of educating (un-educating/re-educating?) myself about ALS. My mother has been struggling with all those non-descript symptoms for about a year. I urged them (my parents) to get her in for a PET scan (I think that’s the name) about 5 months ago. Since then it’s been a litany of doctor’s visits, surgery (unrelated to ALS), more testing, detection of a heart issue, possible early dementia, etc. My cousin’s wife is a neurologist and she was very concerned she’d had a stroke. Stroke was ruled out by several doctors so I begged her to ask about seeing a neuromuscular type doctor. Please forgive my ignorance- I’m learning as fast as I can. Anyway, they did all the testing with the needling pokes, took more blood, etc. He didn’t seem optimistic. Of course I used my Google 101 medical degree and, as you all discuss here, freaked myself out about it being ALS. And you know, it wasn’t so much for the general symptoms that could be ANYTHING. It was that those “weird” symptoms she has that I can’t articulate were staring up from the screen, worded perfectly. And I just knew. Yesterday she went back to go over all the latest test results and they confirmed it. She and my dad are actually handling this better than we (the kids) are. They don’t even own a computer, but I want to find them some sort of support group. Unfortunately they live in a small town so I’m not sure what’s out there. They have put her on Rilutek (spelling?) and are encouraging her to get the feeding tube thing inserted. She started off by gaging when she’d take vitamins, which then led to choking when she’d eat, then to the point where sipping water can choke her. My wonderful dad makes her calorie packed milkshakes and gets on her nerves I think following her around trying to force feed her. :-? She is maintaining her weight for now, but she is very very thin and we are sure her lack of strength and energy could be helped if she was getting enough nutrients. But she’s resistant to that tube and I don’t blame her and we aren’t pushing it. Her fine motor skills are starting to be impacted. She sort of drags her right leg a little when she walks. Her energy and overall strength are clearly lessened. I took it as a good sign last night when she told me to “call her back when I can stop crying, because she needs to go soak her whites.” I’m not sure if that’s a brave face for me, or her true demeanor. But my dad did say they agreed that they are not going to let this dictate their life. They will live their life day to day and do whatever they can to slow the progression. I understand that ALS impacts everyone differently and it moves more quickly in some than others. Her doctor said she could stay just like this for 10 years. Or, tomorrow she could start a rapid decline. And that there is just no way to predict that for any one person. The uncertainty and knowledge of how bad it CAN be in the late stages I think is what is killing me the most. Anyway, sorry for the lengthy introduction. Any words of wisdom are greatly appreciated. But I think I mostly just need to not feel so alone in this right now.

 

[momap53]

Hi Jamie. So sorry for your Mom's diagnosis. Wonderful that you're helping to get info for your parents.

Falls can be fatal for PALS. It sounds like she has foot drop. Please get her a walker and ask the Doc about AFO's (ankle foot orthotics)

There is an excellent series of 3 videos called "the ABC's of ALS". You'll find it on you tube.

Contact both the ALSA and MDA in your state to find local chapters. They can offer invaluable support

You're not alone on this journey.

 

[Barbie]

Hi Jamie and welcome. I ams so glad you are here and there for your parents.

sounds like your mom may have some bulbar issues--how is her speech? hopefully the neuro hooked her up with the ALS association--if not, call them right away and ask for some help. Also, did they get her set up with an ALS clinic? that is the most important thing for her to get into--

As much as you want to cry--you do have to be strong for her and him too (as much as you can). believe me there will be plenty of crying but there is a lot of work to get done. if she is gagging on thin liquids, she really should go for the Peg tube--sooner rather than later. some tricks that can help: tucking the chin when drinking, one sip at a time, and adding thickeners (available at drugstores or online), go slow, and don't try to talk at the same time as eat or drink.

the dragging foot is called foot drop and can cause trips and falls which are very dangerous since she probably doesn't have the balance or reflexes she use to have. many pals here have been injured by falls, sometimes seriously because they didn't realize how quickly things change. She should get a cane and/or walker ASAP.

is she on SS and medicare?
If not ALS diagnosis is fast tracked do not wait because wheelchairs and equipment are expensive.

You will see that many pals do not take ritulek because of the expense, but that is a personal decision. If she could get a computer she and your dad could join here. there is tons of good info.

Lots more I could say to you, but ran out of time for now. best of luck to you and a big hug.

 

[here4her]

Well JamieL, and all the rest of the "newbys",

Welcome to the club. I'm not "the" spokesman, everyone here is "a" spokesman. I'm just sitting here reading the latest stuff and saw your post. All of us can relate to you, far too well. We all understand and sympathize with you, and offer you our support and as much comfort as we can. It sounds like I'm speaking for everyone. I can't really do that, but from everything I've read in this forum, I think what I am saying is pretty much the truth.

And here, you can voice all of your fears, anxieties, questions....and later, your hopes, revelations, and then finally your support and understanding for others.

As you have probably seen by now, if you've been reading the other posts and blogs, there are some very knowledgeable people here who are very much willing and able to help you learn as much as is known about this disease. Some are nurses, scientists, even a Dr. I believe......(Mr. Wright), someone correct me if I'm wrong about that. But you can find him in the members list and ask any question, he "is here to help". So are the rest of the gang.

You can also see that there is a "thread" for almost every category you can think of, and if not, you can make one. Just look around a bit, you'll find what you need. In the meantime,

Hang tough,

Steve

 

[vickim]

You are not alone here. The people are great, loaded with lots of info, love and understanding. It is a sad situation you had to come here but a big welcome. Sending hugs and peace.

 

[cubcake]

Welcome, Jaime. I'm so glad that you found us. My husband has Bulbar ALS and started the same way. Heed Barbie's words and suggestions as they are wise ones. Please let me know if there is anything I can help you with.

Also, when I just want to cry my eyes out and sob at my husband's feet, I remember this......His job is not to console me in my grief. He's got enough on his plate without that. My job is to make his as easy as it can be.

I wish you peace and strength. You sound like a wonderful daughter!

 

[JamieL]

It's just ironic, horribly ironic, that when we'd play that morbid game of "what's the worst disease you can imagine?" she has always, always said ALS. How awful it is that your mind is still fine but you can't communicate or move or breath. People always think cancer is the worst thing. And I know it isn't a game of who has it worse... and I don't mean we literally played a game about naming diseases. :-/ But she has said, more than once in my 36 years, how terrible "Lou Gehrig's Disease" would be. So yeah, all I could think was "not this... anything but this."

Anyway, I was sort of numb, but I do recall my dad saying something about a place they were referring her to. I've searched online and don't see any ALS clinics in or near us (I'm in Dallas, they are about 2 hours away in southern Oklahoma). There is a North Texas chapter of ALS Association though. I need to circle back and ask what, exactly, he's told them to do. And isn't getting a second opinion a good idea?

Her speech became slurred and her face appeared twitchy and droopy kind of a long time ago. Like 3 or 4 YEARS ago. Then she gradually lost energy. She slept in late which is NOT like her. Took a nap in the middle of the day which I've never seen her do in my 36 years. Then she sort of shuffled her feet when she walked, which turned into a full on drag of her leg. I don't think my dad noticed as much because he lives with her. And if you don't know her you might think she's just a frail 70 year old woman. That was my frustration when she had surgery in November. Thankfully in all this testing, an enlarged duct from her pancreas to her spleen was detected. That doctor didn't think it was a big deal, but referred her to a specialist who said no, we need to flush it out. Which turned into taking her spleen and 3/4 of her pancreas. However, none of that had anything to do with her symptoms. It just means we lucked into finding what most likely would have turned into pancreatic cancer within a year or two. But it seems like anything I'd try to discuss with the doctor would result in comments like "well when we get to a certain age...." I was livid, finally. And I said "With all due respect, you see a 70 year old woman you don't know so I can see why you are dismissive of this. But I am telling you, THAT woman in there is not MY mother and SOMETHING is wrong." At that point he agreed to urge my parents to see a neurologist. Because daughter begging = not much response bu Doctor suggesting it = we go immediately. Such is life though. Anyway, in addition to slurred speech, she can't project her voice and I can tell she just gets exhausted trying to talk to us. You can understand her just fine, she just speaks slowly and very low and it seems like it takes all her energy to get out a phrase or two.

She did go to a speech therapist prior to diagnosis and she told her the same thing- look down when she drinks and take it slow. At that point is when I started to get really frustrated and asked the doctor if he agreed that isn't' NORMAL and there must be a REASON she has to duck her head down in order to not choke on a flipping drink of water! It is strange though because sometimes it's bad, and others it isn't. Dad said last night she ate about 1/4 of a chicken breast, maybe 1/2 a cup of mashed potatoes, then some ice cream. And SHE made dinner for the first time in ages. She also managed to drink an entire Ensure that he churches up with protein powder and a banana (blender). That was Sunday, before her official diagnosis. That evening she ate a full serving of pasta and didn't gag/choke. But she has good days and bad. Reading up today on this site, I'm torn. It seems like I can agree with her desire to not get the tube if she's able to eat like that. But it seems if you wait until you CAN'T eat, the overall condition of the person has deteriorated so much that they can't bounce back from the surgery. She did GREAT with her surgery in November. Healed fine, all was great. What kept her in the hospital was their inability to keep her heartbeat regulated (she has atrial fibrillation too, now being treated with beta blockers). So with that said, it seems like maybe she should consider getting the tube in and recover from the surgery NOW, even if she just uses it for drinking water for the time being.

My other concern is that they have a 2 story house. When they had it built, they were retired. They had a master suite put upstairs AND downstairs "just in case" and she's always called it the geriatric ward. Dad says she still manages the stairs ok though. All that is upstairs is their bedroom. I told him I'd rather he not wait for a fall down the stairs to indicate it's time to move their bedroom downstairs. She can go from "fine" to "topple down the stairs" without warning, I'm sure. We actually walked around the block on Sunday and she did fine. I used it as my warm-up and then went on my run. I came back around and saw her still walking. In the time I ran 3 miles she made another round by herself. I think it's a good idea to get a walker and wheel chair ready, but I'm not sure how ready she is for that. She does have Medicare, but she is fortunate in that her company that she retired from offered retirees continuation of their insurance at the same employee rates and she took them up on it. So she has double coverage. I think that's why they are doing that medication, which the doctor did tell my dad is expensive and many ALS patients opt out b/c they aren't sure the cost-benefit analysis makes it worth while. They were told (or at least my dad heard) that it's that or nothing because there are no other current drugs available for treatment. Is that accurate?

Thanks for the support and information.

 

[momap53]

So sorry to say that Rilutek is the only FDA approved med for ALS.

Do you know what you Mom's FVC is? Many advise getting a PEG before this breathing measurement falls below 50 because of issues that can develop with anesthesia once breathing is compromised. Yes ,you're right that recovery will be easier while she's more healthy.

Both the ALSA and MDA sponsor Clinics, so check with both in their area. Many of us prefer the "one stop shopping" that a certified ALS multidiciplinary Clinic provides. It makes for a long day, but we see everybody on that one visit. Research is showing some evidence that PALS who are seen in Clinic tend to have greater longevity. Many medical personnel are not at all familiar with ALS and may make mistakes in caring for PALS.

The type of wheelchair that will be needed long term by a PALS can run between $27,000 and 50,000. It will need to be fitted by someone who is well versed in what their future needs will be. To save energy and provide safety you might purchase a transport chair for outings in the meantime or check with the ALSA and MDA loan closets. Some are better stocked than others.

Many, many PALS are honestly surprised when they seem to fall "for no apparent reason". The nerve signals are just not getting through to the muscles so we can't compensate as usual in maintaining our balance. I was amazEd to find out that there was enough suction on the fridge door to throw me off balance! It's quite possible to trip over the grout lines in a tile floor! AND It can be extremely EASY to fall WITH a walker! (Even when you think that you are being very careful)
This can be a very dangerous time.

I would continue to encourage them to move downstairs before it becomes essential. That way your Mom may have more energy to take part in the process.

 

[Barbie]

wow, sounds like you and your family has been through a lot. I can feel the frustration in your words. I think you are doing everything you can to help the situation, but it will take time for the reality to sink in for them.

It never hurts to get a second opinion, but it would be worth the time and drive to get it at an ALS specialist. my husband was diagnosised by a regular neuro and he really knew nothing about the diseasse or much of what helps the patient. he did not refer us anywhere. my husband and i were in major denial for a year and did nothing. he was already on a scooter before Ifinally made an appt at an ALS clinic at Mayo for a second opinion. that was where were able to get all of our help, info and equipment set up. I would not recommend waiting for that second opinion however.

at an als clinic, they will not dismiss your mom because she is 70--treating als is about making her life easier and more comfortable. your dad is right, there are no drugs or treatments available. there are drug trials going on all the time however, and a clinic can help hook her up with those. we all hope someday one will be the cure!


BTW, some think that surgery can actual start ALS--as in it is already there doing it's damage but the stress of the surgery can trigger it. no proof, and not everyone with als had surgery prior to the start of symptoms but it is a theory.

maybe you have to give them a little time to digest the diagnosis and let them take things at their own pace. it is not easy, but if you can step back and just try to enjoy your mom and be there for her. as things progress, she will need you more and more.

 

[JamieL]

Barbie, you are right. Frustration is the key emotion and has been since we started this process back in August (I think?) when she had her PET scan at Cooper Clinic. That's when they noticed the enlarged duct in her pancreas, said she had "plaque" on her brain (huh?) but that it wasn't causing any of her problems, and that's IT. Lots of blood work, an additional MRI of her brain and GI area, and that's all they came back with. She complained that she'd feel a "flutter" and touched her sternum to indicate where, and that she'd lose all energy for 30 minutes to perhaps the rest of the day. They said, and I quote, "your heart is pristine... not just for a 70 year old, but for anyone." They acted like she was the picture of health. It was almost like to placate her that they referred them to a specialist to look at that duct issue, and he is the one who said no, she needs surgery. And it was a good call. But, he's the one I call "Dr. Of a Certain Age" because he said that so many times. I'm sorry, but I'm normally very "Southern girl polite" like my mama taught me, but fear and dispair kinda brings out an angry side. :-/ She reiterated her flutter feeling problems to him and again with the "people of a certain age" nonsense. And again I pulled the poor man out in the hallway for a chat. He said "I'm not a cardiologist..." and I said "But you're a doctor, right? You went to medical school and they teach ya something about the heart, right? I'm a CPA and I know that because of basic schooling." I quite LITERALLY WebMD'd her heart symptoms and asked if it could be atrial fibrilation. They dismissed me pretty much. Then that night, the nurse woke her up out of a dead sleep saying "ARE YOU OK?!" because the heart monitor went off. Then she got moved to the cardiac wing and sure enough. Atrial Fib. My mom is so great though. The monitor went off a second time and they all freaked out and she was so calm. She goes "well... there's that fluttery no energy to follow feeling nobody cared about." So it took being on a heart monitor, which she was only on b/c of the surgery, to get an answer for that symptom.

Cut to an ALS diagnosis. The previous rantings (sorry) are illlustrative of why I am so hesitant to just put it in the hands of a doctor and trust it. I'm an accounant who diagnosed her fluttery heart problem using my iPhone in her hospital room. It isn't that I think they don't KNOW this stuff, obviously, but I think the age thing comes into play. So it makes me feel so much better to know an ASL clinic would not do that. My cousin is an OB/GYN and his wife is a neurologist. They both said the issue is most doctors are also very arrogant and don't listen, so that's the biggest problem. And I guess it's ok for me to say that since they were insulting themselves!

Anyway, there are two ALS clinics in Texas. One in San Antonio and one in Houston (that I can find online). My parents are both retired, have no pets, my dad is in excellent health (knock on wood), etc. so traveling to a clinic would not be a huge issue. I am printing off all the info I can find and organizing it for him. I printed off some of those inspirational ALS stories too to send my mom and keep her spirits up. I am a "do-er" when it comes to supporting people. I know I need to just relax, take a deep breath, and let them get their minds around this. I'm going to just give him the info for the ALS clinic and ask him to call. Then force my control freak self to back off. Ha.

Thanks again for your advice, support, and words of wisdom. I'm sorry you have it to offer. I know each of you have been, and are on, a difficult road. Mostly, thanks for taking the time to read all this and respond. It means a lot!

 

[lgelb]

Jamie,
There is also an MDA-sponsored ALS clinic in Dallas. Google "Texas Neurology."

 

[Compass Rose]

Jamie, I'm so sorry about your mom's diagnosis. I well remember the terrible shock of my brother's diagnosis last year, and really commend you for taking charge of the situation and trying to find amswers and get your mom appropriate medical care. You are obviously a thoughtful and caring daughter.

I don't have much advice to give you, since thankfully my brother's illness hasn't progressed very far, but you came to the right place. This forum is a community of wise, empathetic and exceedingly generous people willing to share their knowledge or just offer support. You are not alone.

Take care.

 

[JamieL]

Thank you Igelb- I actually found that one after I posted. I was just going off the ALS Association website and it isn't listed there. But I found it doing a general Google search.

Compass Rose- thank you for the support. I am so sorry about your brother's diagnosis. I hope at some point I am able to give support to others here as well. Yet I gotta say, ALS is not something I ever wanted to become an expert on.

 

[Arone]

Hi JamieL,
I am not really sure about quality of my advice but Depend on your ease, i guess it would be nice if you get some assisted living facilities for your mom to stay independently, or admit them to an aged care home. As they provide them all necessary and luxuries facilities, they need to live comfortably. Also provide nursing facilities according to their needs.

 

[JamieL]

Thanks Arone. They want to stay in their home as long as they can. Right now she has no limb/mobility issues other than fatigue and general muscle atrophy it seems. But I was relieved that they are clearly open to that option when and if the time comes. My mom is small and frail and my dad is pretty big (weight lifter type) and thankfully he's healthy. So he is able to easily help her maneuver and whatnot.