Reluctance to go to clinic

vltsra

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I'm posting this thread here as I thought I could get some input from both CALS and PALS. My PALS is in a power chair now, and I need to look for a handicap van (things have progressed in the past few months) to be able to take him places, including the ALS clinic. We have an ALS clinic appointment in February so I need to find some way to transport him there. Now he is expressing reluctance to go to the appointment. He says they are only going to look at him and see his progression and write notes on it.

Wondering whether anyone else feels this way or whether other CALS and PALS think there is a lot of benefit from going to our next appointment. He went about 7 months ago, but I wasn't able to keep his October appointment because we were working on modifications to get him out of the house. His condition has progressed from our previous visit, but he is still eating, speaking, and doing standing transfers. Any thoughts are appreciated.

V
 

Nikki J

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I think it is not uncommon to feel like that. If you have no equipment or other management needs there isn’t always a clear benefit. Does your clinic have televisits?

i attended a presentation by Dr James Berry of MGH last year. He said that, especially with home monitoring tests becoming more available that clinic visits were not always so necessary. As he said, once the diagnosis is made it is really helping problem solve. he also said if you tell me you can’t turn a door key it doesn’t matter what my hand exam shows what matters is helping you solve the problem.

i love my neurologist and the clinic staff but I have started to think there isn’t much point either
 

KevinM

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I’d like to echo the sentiment re: questioning the point of regular clinic visits. I get that it is very therapeutic for some, but I don’t share that feeling. I have a very good and willing PCP here in town, and have established a relationship with a local pulmonologist. Any time I want to see my local neurologist I can, though there is really no point right now. I can find all I want about clinical trials, therapies, etc. right here. All my prescriptions are handled through my PCP.

I am still early in the disease, and do not need wheelchair or BiPap prescriptions, PT, or other items in which a clinic visit might help. I know my body and it’s progression, and I don’t need a neurologist to tell me my tricep muscle or shoulder muscles have weakened since the last visit.

I might reconsider a visit as I progress, but I’ve already cancelled two clinics at UF Health here in Florida because I don’t need anything it can offer at this point. And to your point, V, even when I get to the point of your PALS, an all day trip just so the neurologist can make notes on progression is probably not in the cards. Kevin
 

swalker

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I have never been to a clinic. I do see a neurologist and a pulmonologist on a pretty regular basis.

Early on, I visited the doctors on a schedule they recommended. Pretty soon, I realized I was spending too much time and energy visiting doctors, with no benefit to me. Now, we schedule the appointments for a frequency that suits my needs, as we see those needs coming up.

Typically, I see the neurologist about once every year. I typically see the pulmonologist once every 6 months, though I am currently having more frequent visits as we get me comfortable with the ventilator.

All of my medical providers are available via online portals, so I can communicate with them using something like email whenever I need to. I don't often need to be physically examined. What is the neurologist going to say? You have progressed? Yep, I already know that:).

I do think more frequent visits to the pulmonologist are important for me. My breathing sucks!

In the US, private insurance, medicare, and social security require me to visit a doctor periodically. I think it is once a year, but am not sure. I have no problem fulfilling this requirement.

Steve
 

mytmouz

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I have had one clinic, and got a lot of info that I had not had. I have my second scheduled for the end of the month. I plan on going, because I see the need for eye gaze rapidly approaching and I want some help with that. Once I feel I have everything I need, I doubt I will keep going, as there most likely will be no benefit. My neurologist told me to schedule an appointment every 6 weeks, and just cancel if I didn't need to see them, so I am using that as my guide...
 

pittsburghgal

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V, we also do not have a vehicle capable of transporting my PALS and when we were going to ALS clinic appointments we were provided with transportation through the ALS Assoc. so you might want to check with your local chapter.

We kept multiple ALS clinic visits throughout the years but eventually it became too exhausting for Frank and I felt we really were not getting much more useful information and there was not much that they could do for him. The last time we went to Frank's pulmonologist in Dec. 2018 we waited in a waiting room for an hour with many people coughing. Two days later, Frank developed pneumonia so we decided that was the end of going to the ALS clinic or any other doctor visits.

Sharon
 

Kristina1

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I find clinic very useful when I have a new need arise, but I have had other visits where I didn't really need anything from them and it just felt like a huge energy drain. I also tend to feel depressed and anxious in the week following clinic. I think the reminder/reaality check of my disease gets to me.
 

Dee Dee 0617

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I love my Neuro team , but it's been three years now, and I've said call me if you want to try something. I drop portal emails to let them know I'm still thinking about them. Sent a Christmas card.
 

affected

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We stopped going when there wasn't anything they were going to be able to do in a practical sense and built a good team around us for the needs we had. I say go when there this a need or benefit, but don't just go because an appointment is made.
 

KarenNWendyn

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My clinic is every three months and I see the neurologist, clinic nurse (she runs the show), PT, OT, SLP, RT (they do PFTs), dietician, social worker.

The nurse is the most helpful and I usually get something out of seeing most of the others. A couple of them might end up being a waste of time. Yes it’s tiring but it’s nice to get it over with and have it all in one place. I also see a pulmonologist separately and I think I’m going to stop seeing her for various reasons.

As long as I’m physically capable of getting into the van and going to the clinic, I’ll continue to do so.

V — in terms of whether or not to get a van, if it’s just to go to the clinic, I would look into public transportation. Our public bus service also has a shuttle service for wheelchair users. There are also taxi and limo services that might cater to power wheelchair users. We use our van for many other outings, so it’s worth it to us to have it. If you have one and rarely use it, that may be too expensive to justify keeping it, and you would need to use a trickle charger to keep the battery from running down.
 

KevinM

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I also think there is a lot of variation in clinics, and the associated experience. Kevin
 

KimT

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I don't go to clinics and try to avoid most doctors. Every three months I go to my neurologist/pain management doctor and a psychiatrist, both for Rx refills. I have a local primary care who will write anything I need or want. My pain management doctor is willing to write Rx for pain meds and he has a medical cannabis partner I see a couple times a year.

I own all my respiratory testing equipment and my RT calls me each month. He is willing to come any week I want but he only is required to come once a year, for insurance purposes. I'll see him at the end of February and he comes to the condo. He's very nice and has even helped Fred with his CPap.

I have a lady who will do massages and a PT clinic I can go to locally, if I want.
 

Narrowminded

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Until Brian really could not get out of bed, we went to our clinic visits, every 3 months like Karen and with all the same check-ins Brian didn’t really agree with going, but my theory was at some point we are going to need them when we can’t get there, and the more they know us, the willing they will be to help. In our case that proved very true. I can’t praise his neuro enough. He bent over backwards to try to get us help and anything else I needed for Brian after we could not get there.

while going to clinic he got to know me as well and we built a great relationship. If I texted him (yes he gave me his number) with an issue he trusted what I told him. I only did that when something was really needed. He als ended up asking me to speak with someone for an article too and I gladly helped him out as well.

Every case is different, but that worked for us..
 

lgelb

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It is like anything else, you can judge the value of the experience based on your history with the people involved.

For the vast majority of needs, an ALS clinic-connected rx is not needed, the wheelchair being an obvious exception since you really want to get the order right and complete the first time and the best chance of that is usually with an ALS or SCI clinic. That and rx to get some reimbursement for the hospital bed and PT at home is all we took from clinic.

We stopped going a year and a half before Larry died. Apart from having seen some doc, like a PCP, in the last year so you can get rx that are needed, it is a judgement call.
 

Nikki J

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I do agree with Sue there is value in developing a relationship with your clinic people if you may need their support at a future time. How many / how frequent the visits to get there really depends on the people involved
 
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