First Clinic Appointment Qs

[JamieL]

Let me preface by saying I am beyond frusturated. My mom was diagnosed (finally) on 2/18/13. I was in shock and didn't really get all the info my dad was giving. So I called them yesterday. I knew the neuro had referred them somewhere... I assumed it would be the ALS clinic here in Dallas (neuro also in Dallas). But no. He referred them back to their FAMILY PRACTICE doc in their small town! I started telling my dad stuff I'd found on this forum, how she needs to be seen in clinic, the info on Rilutek, etc. I can tell he was just overwhelmed and said "I don't have any idea what you're talking about. He didn't tell us any of that. I don't even know who to call or what to do." :sad: He did figure out that due to the Medicare donut hole nonsense that this drug will be pricey. He has found some company that will supply it at 1/5 of their household income. Does that sound legit? I know I read about some prescription program you all were discussing on here but I can't find it again for the life of me. I am just beyond stunned that my dad mentioned to this doctor that "she still gets up and down our stairs ok" and he said NOTHING about it being dangerous or to maybe not let her go up and down stairs unassisted since things can turn on a dime. Ugh.

So I am giving my dad the number to the ALS clinic at Texas Neurology. He just seems so grateful for my help and I feel like he's viewing me as a life preserver, just clinging to me. Which is FINE, but caught me off guard because I more expected a "I've got this, you can back off" attitude. I don't know why. So he can call and get her an appointment, and I want to go.

1, It seems you all go about every 3 months. Is that right?

2. And what should we expect at her first visit and subsequent visits? Do they repeat the EMG each time or what?

3. Is there some sort of patient advocate or something there that helps seniors navigate their Medicare? Would they have the same info on the prescription drug programs I read about here?

4. What kinds of questions should we ask? Is there a particular test or "value" I should pay attention to? I've scoured the forums and used the search feature and have started compiling notes and now I need help making sense of all this. I'm getting overwhelmed and feel that I need to be the one who is sorta in charge. I think my folks are both just exhausted by all this.

5. What about supplements? Is there anything you all take for fatigue, cramping, etc. that seems to help?

6. What should I expect and what would be a red flag as it being "bad?" I can't seem to find many stories on here about anyone having a bad experience with their clinic. The next closest one here is in Houston so I'm hoping this is a great one! Have any of you heard anything about the one here in Dallas? It's and MDA sponsored clinic at Texas Neurology. But I've just read tons about the one in Houston and not heard word one about this Dallas clinic.

That you all so much for your time. I realize most of you are PALS or CALS and that getting online to read/answer posts takes away your precious time and energy. I sincerely hope to be a helpful member once I am no longer a newbie.

Thanks,

Jamie

 

[momap53]

Jamie, your parents are overwhelmed. I know that you feel that waY too. Kudos to you for researching and making recommendations.

Research is showing that attending a Clinic provides for greater longevity. Some do find individual providers in the various disciplines who are knowledgeable about the needs of PALS or are willing to learn.

I go every 3 months. Some have longer intervals between visits, depending on what their needs are.

My Neuro performed a complete exam and an EMG on my first visit and I returned the next month for the actual Clinic. He also reviewed all of the tests I had had done and looked at the discs from the MRIs and all the other doc notes. I collected copies and hand carried all of these. That will probably be the last EMG.

At Clinic she will see someone from each discipline. Speech Language Pathologist, dietician, respiratory, PT, OT, Social Worker, and MDA rep.

Take a binder with sections for each discipline and a list of questions for each.

For Respiratory FVC is the BIG # to track (there are others as well)
Weight will be monitored.
Strength tests will be done too as part of the exam
FRS. Functional Rating Scale

Mestinon or provigil for fatigue, Baclofen or gabapentin for cramps. Meds may vary by doc.

Some others will chime in soon.

Oh! Ask your MDA to send out their Caregivers Guide.

 

[JamieL]

Thank you Deb! That is SO helpful!

She was at the neurologist for about 6 hours on 2/7/13. That's when they did the EMG and the extensive clinical exam. She's been down a long road already (I've discussed in other posts) so she had a PET scan, MRIs, CT scans, tons of bloodwork, EKG, etc. etc. etc. The neuro had reviewed all that first, looked at her MRI and ruled out stroke (the 4th person to do so) and then flat out said he suspected ALS. They (my folks) didn't tell us that b/c he'd told them not to tell anyone until he got the results back. But he was pretty sure that's what it was. On 2/18/13 they went back to him and got the final official results of all the testing, and her diagnosis. He did talk to them about the PEG, but that's it. It seems that overall he started off good! I mean I'd expect him to keep seeing her rather than see a family doc. However, as an update, I talked to my mom after sending this post. She said my dad is off a little- her family doc REQUESTED to be involved and wanted her to come see him and be part of her "team." And she DOES have a follow up appointment with this neuro in June. So it's not quite as messed up as it seemed at first. My poor dad. He has a binder already. I'll tell him to add sections like you mentioned. He has copies of all her records and makes a point of requesting them at the end of each appointment with whatever doctor they are seeing. He has her MRIs on a DVD (?) and has a plastic pocket in the binder for those. I mean he keeps all of it! He is also tracking what she eats/drinks all day, how she feels, energy level, mood, etc. and weighs her every night.

So I'm not sure who she'll need to see at this point. She has total mobility and "limb function." Her grip is fine, she walks and climbs stairs fine, etc. She's just slow and sorta shuffles her feet and she she's tired she really drags one leg. But I suppose that isn't "drop foot" since it corrects itself after she's rested. In the morning you'd not know anything was wrong! Her gait is fine, she still does housework and cooks dinner and grocery shops. No cane or wheelchair or anything. It just seems to be general fatigue and loss of muscle mass. She looks like she's withering away. She's never been a skinny gal so to see my mom, at 5'6 weighing in at 112 pounds is a bit horrifying. But she doesn't want the PEG since she can still eat. That makes me think the dietitian should be top on the list? She is textbook bulbar onset what with the droopy face, soft, slow speech, swallowing issues, etc. So while she hugged me tight and squeezed my arm with her normal strength, she can no longer pick up my kids. While she can walk unassisted, doing so wears her OUT. While she wakes up with some pep and jazz like normal, she doesn't get out of bed until 10am (used to be more like 6:30). I can talk to her at noon and understand her just fine. I talk to her at 8pm and it sounds like she just woke up from a deep sleep. Anyway, not sure what all that rambling is about except to say at this point we want to work on her weight/discuss PEG option and do something about her energy level.

Again, thank you for your time. It is genuinely appreciated. I realize there is a search feature, and I used it a lot, but having this all in one spot is SO helpful!

 

[JamieL]

Forgive my question if it's dumb, but is what I'm describing about my mom "bulbar palsy?" I thought that was a different disease. But then I just read it is a "form of" ALS. So is there a difference between ALS with bulbar onset and "bulbar palsy?"

 

[momap53]

It's wonderful that her family doc wants to be on her team! She'll still need to followed by him for all the other things that crop up. Her Neuro can forward info and recommendations after each visit.

A PEG is essential to maintain weight, nutrition and energy.better to get it before it's critical and just use it for fluids and supplements. She can still eat whatever she wants with the PEG in place as long as it's safe for her to do so. The stronger she is the easier the recovery will be. Some docs don't like to do it once the FVC drops below 50 because of problems with anesthesia. Please encourage her to get it ASAP! How much weight has she lost? Sounds like she might need the PEG well before her next appointment in June. Is her Neuro a neuromuscular specialist and part of a certified Clinic?

Our friend Rose has some good info about PEG's on her profile and blog. Send her a friend request. Photos too!

Sounds like your Dad is really on the ball.

Your Mom needs to be evaluated for some sort of communication device as well so she can learn to use it before her speech is completely gone.

Good luck.

 

[momap53]

Sorry, off to moderation. Look for it later.

 

[jellis86]

Hi JamieL,
I was just diagnosed with Bulbar onset ALS on 2/14/2013.
The main difference is that Bulbar onset ALS involves both upper and lower motor neurons. Progressive Bulbar Palsy only effects lower motor neurons.
You can do searches on here and the web and find lots of explanations, symptoms, etc. for each type.

 

[frankb]

Wow, a lot of stuff going on here. Have you, your dad, and your mom been to their local ALS chapter? It is highly recommended in order to get a good overlook of what information is available, the support/help that is available now, and what the family is facing in the future. The chapter usually provides invaluable reference material which explains the disease in fairly much detail which brings everyone to the same page in the "playbook." Also, have you had a second opinion? Many of us received a second opinion from the Neurologist who one would also see at the ALS clinic. I asked my neurologist providing my diagnosis to make the referral. That being said, I still had to work with the clinic to insure they had all the necessary information from the referring neurologist (without my followup the clinic probably would still be waiting for the documentation.) Usually the second opinion comes before the ALS clinic. Perhaps other forum members can provide additional insights. God bless.

 

[JamieL]

Yes, the neuro she saw is a neuromuscular specialist, but he is NOT part of the ALS clinic. He didn't even mention that there WAS a clinc and did not talk to them about getting info from the ALS chapter. They live in a small town so I'd bet the North Texas chapter will be the closest. I'll go even if they can't/don't want to.

I did some reading this afternoon and it seems that pure lower motor neuron involvement that NEVER escalates into upper motor neuron involvment is quite rare. Typically people with bulbar symptoms do develop the standard ALS limb issues as well, even if it isn't for a few years. It's adding to my questions to ask at her appointment. Even if they don't do the clinic, which I'm sure they will since my dad was so interested and asked me to get the number, I WILL go to her appointment in June. I am just really surprised that he didn't offer the clinic as an option OR bring up getting a second opinion. That's what I asked in another post I think- should she do that pre-clinic? Perhaps I'll just have my dad tell them at the time he makes her appointment to ask if they think it's necessary. Perhaps knowing that her neuro is a neuromuscular specialist and the fact that she has, literally, had every medical test known to mankind, makes it unnecessary?

Per my dad, he (doc) was not overly concerned about her weight and said he'd expect it to be worse as long as she's had symptoms. I was thinking back to the first time I mentioned to her that she was twitchy (looked like a little bunny twitching her nose and slightly squinting her eyes over and over). Or the first time I got annoyed with her for not speaking up and talking like she was drunk. She doesn't drink, but I seriously would say "Mom, did you drink a glass of wine before you called because you don't sound right." Or the first time I asked why she was taking her nightly vitamins and stuff with apple sauce instead of water and she told me that it was because she kept getting choked easily. And it was YEARS ago. Before my daughter was born, so at least 6 years ago. With the twitching at least. But over the past 3 years the choking has gotten much worse and people at church started asking my dad about her. Then my cousin's wife, who is a neurologist, pulled my cousin aside and asked him to talk to my parents about my mom's health saying she looked like she might have had a stroke. I was glad she spoke up, but at the same time that made them latch onto the idea of stroke and not let it go until FOUR different doctors told them it was NOT a stroke.

I did see that somewhere else about Rose's blog. I need to go find that again. I have on my list of questions to ask about the PEG now and just not using it for feedings yet if she doesn't want to. She had surgery in November (unrelated to ALS) and bounced back fine. So I think she should do it now while we know she is strong. I think tonight I might have my dad just read me what her test results are. At least her FVC to get an idea of what it's doing right now. I asked her night before last about her breathing and she said so far so good- no issues at all with breathing. But I've read those with bulbar onset tend to aspirate a lot which can lead to pnemonia and why their prognosis is normally not as good.

Whew. I need a break from this for a minute I think.

 

[ltbeauti]

So sorry Your mom and family are dealing with this.
I go every 6 months. I have a slower progressing form of ALS. It seems to be very similar to psedobulbar palsy. I had mainly speech and bulbar symptoms for about 5 years. Then my balance and walking became affected.
I have some trouble swallowing thin liquids and my tongue is now atrophied. But I do still eat and have been maintaining my weight.
Ifeel fortunate that if I have to go through all this I got the ALS diagnosis because I can get much needed help That would not be available otherwise.

Bulbar onsets have a high instance of rapid progression, but then there are folks like me.

 

[ltbeauti]

Let me say that personally I like the ALS multidisciplinary clinics. All the specialist see me at the same appointment.. Social,respiratory,OT,PT,ALS,neurology,nutritionist all get together and work the team approach.

I do not feel rushed (anxiety issues). I have been to ALS clinics in NC and VA.

 

[JamieL]

Thank you for your input. I'm sorry you are going through this as well. You kind of sound like my mom with the slowly progressing mostly bulbar symptoms. I'm glad they don't make you feel rushed at the clinic because I'm planning some GITMO style interrogation... I guess except without the water boarding type techniques.

 

[Barbie]

Hi Jamie,

All your questions will can be answered at a clinic. the reason for a clinic over a traditional neuro or your gp, is that they are real specialists in ALS. they see it all the time, where as most neuros may only see one or two cases in their life time. the ALS clinics are most up to date on drug trials, equipment and care and progression. they will know how to get your mom the most appropriate help at the appropriate time. they will suggest, not wait for you to ask. Remmber, they see ALS every day. the idea of a clinic is two fold--one is to see ALS experienced docs, and the other is to make things easy on the patient and family. at most clinics, your mom and dad will sit in an exam room, and over the period of a couple hours, a variety of docs and therapist will come to you (nice huh!). Usually this is the Neuro, pulmonologist, resp. therapist, occupational therapist, speech therapist, physical therapist, nutritionist, rep from ALSA, and sometimes a rep from an assistive device company. once the diagnosis is in, they do not do an emg or a nerve test every time, but usually will do strength test and breathing tests.

They want you to attend every 3 months, but that is up to your mom and dad. some pals stopped going because they doesnt get a lot out of clinic at some point-- some go every 3,6 12 months. there is no hard and fast rule. Is june the first clinic available to them? can they get on a waiting list for a sooner one?

Jamie, try to relax, take a deep breath and slow down. your parents are doing pretty good, they seem to have a good grip on things and a good attitude. you are doing a terrific job learning and helping them learn.

Everything will be alright, believe it or not.

 

[JamieL]

Thanks Barbie. I'm just a spaz right now. I will calm down at some point. I think I was thrown after talking to my dad. He does NOT have a good grip on the "what to do next" part and seemed very shocked at how little this neuro told them. The June appointment is back with the neuro who diagnosed her. I gave my dad the number to the clinic Tuesday night, but not sure he made the appointment yet. They only do the first Friday of each month. Once I know she is being seen there for sure, I'll feel better about things. Thanks again for your help.

 

[Barbie]

Hey Jamie,
I am not surprised about your dad--It is really overwhelming to hear that your partner is dying of a terrible diesase and not get any real help or imput from the doc. We went thru the same thing--Neuro diagnosed us had never seen ALS before --when I asked what to do-- he shrugged.

I would suggest that they go to the ALS clinic and dont bother with the regular neuro. Yes, usually there is a clinic once a month. They can always go back to their regular neuro at any time but the clinic will give them the most info and help.

hang in there!