Reluctance to go to clinic

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vltsra

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Thanks to all of you for your input. We actually got the Rx for the power chair from his PCP because we would have had to wait until the elevator was complete and the clinic could see us in February.

My caregiver suggested that if he really doesn't want to go to clinic I could keep the appointment and discuss some of the issues with them on my own. That way we maintain the relationship and I can perhaps ask questions on his behalf. My caregiver has worked for patients with ALS so has experience with different situations, unlike me who is sometimes in uncharted waters. I think our ALS clinic is great but they are often busy and booked. His PCP is really responsive; I can ask her for anything he needs and she helps.

I told him he doesn't have to make the decision for another few weeks. The appointment is February 11. If I don't have a van by then we can arrange transport. I do still want to get a van because I think it will do him good at this stage to get out. I'd like to just take him down to the beach.

V
 

lgelb

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In a city like SD, I would imagine you could rent an accessible van for the day for a beach trip or whatever as you can here. They will also drop it off.
 

Kristina1

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Me, explaining to someone on FB why clinic days are hard:

Even though I'm very disabled already, i shield myself from my reality somewhat...my best analogy is being careful not to look at the sun. It's huge and hot and bright, but if you don't look at it, it hurts less. But when I go to Clinic the whole point is to examine the sun as closely as possible. ...I guess I'm a vampire in this analogy?
 

Nikki J

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I think that is a really good way to explain it. We talked about being cranky for a couple of weeks before here once. I think it is because you start thinking about it and preparing so you don’t miss telling them / asking them things when normally you try not to focus on it
 

ARCG

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My pals stopped going to the clinic two years ago. We were there quite a bit early on, as in addition to the regular visits, participated in a clinical trial. As time wore on, however, the exhaustion of all day sessions was too much for him, especially as we would wait in small treatment rooms for an hour plus before seeing the next specialist. Certainly understandable why they try to fit all the appointments in one day, but, as the disease progresses, becomes untenable for the pals, sometimes. My pals is less stressed now. We have not purchased a van, as there are options to rent a van or arrange for transportation in our area if necessary.
 

Doglady

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V-
I agree- it is depressing/frustrating to go to clinic and have to recite all your new problems. At home I just plod along but at clinic it really makes you realize how bad you’ve gotten. I usually end up in tears and everyone thinks I’m depressed. I think I’m tired and irritated.
I’ve often wished I didn’t have to go but this last time I made a point of not going into too much detail- just what I considered the big things. And this time I didn’t have to talk to everyone but just the specialists who could answer my current questions.
I do feel there have been benefits to my visits for a variety of reasons including referrals for home health care visits and timing the requests for free loaner equipment through the local ALS association loan program so I have what will be needed a little in advance. The doctor and other staff help me to stay a step ahead of the progression. The clinic staff is very knowledgeable and my quality of life is better with their help. If I didn’t like my doctor and clinic as much as I do I’d ask to switch to the other one in my area or take a longer drive to find better care. I don’t know if you would have other options. As time goes by I’m sure I would prefer virtual appointments.
I also think the exam rooms in an A L S clinic should be designed to accommodate our specialized needs. In my clinic the standard exam rooms do not provide a comfortable environment for someone in a PWC with a CALS and multiple medical professionals - Especially for such long visits. Too small, dark and institutional!
Regarding vehicles- we were very slow to get our own handicapped van and used the public handicapped bus services for quite awhile. Even though I don’t go out that much anymore it is better for my peace of mind that we are now independent. Some people really seem to enjoy the public services we are lucky to have here - called “Metro Mobility”. It’s safe, cheap and quite reliable but you have to plan well ahead to schedule your pickups, and trips can be long and tiring due to multiple passengers. I’m very glad we got our own vehicle (actually a Pilot). You will have to weigh your options and decide what is best for you!
Good luck. I hope some of this helps you a little.
 

nona

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I can't stand going to clinic. I only go when I have something new to discuss that can't be handled by email or my pcp.
 

Trippy

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I dread going, even at twice a year. It’s an excruciatingly long and exhausting visit and I always feel depressed afterwards. I would like to go just for needs that arise but it’s a long wait for appointments.
 
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