appoints keep rolling in

[jessielf]

Ever since my mom's last Dr appoint and found out she is getting worse all of the sudden she is bombarded w appoints! Which is good but my dad is using all his vacation time to take her. I wish they could combine them some how. But they tested my mom's oxygen levels and her lungs and they are good! She has another appoint next week for something then the following week a consolidation for different devices for her to use to communicate. I told her she needs this and I would take her myself if my dad couldn't. Then the week after that is the big appoint w the specialist and the week after that is her neurologist appoint. And sometime she will have to do a sleep thing for a bi pap. So far everyone is handling everything good. But I don't think my dad knows just how progressive this disease is. He thinks its just a step at a time thing and she won't keep progressing until a dr brings it up and he is faced w it. My dad is even starting to weigh my mom because she lost 20 since last Jul/Aug. He doesn't think she is eating. She is but she is saying that her appetite is changing and everything is tasting different. All of spirits have been staying up but I dread hearing about the big appoint in a couple of weeks. I'm hoping that maybe there will be new meds for her to try or something. But I am trusting in God and I know he has a purpose for all of this. Just hope and pray we can just hold on to that. Hoping for the best!:razz:

 

[notgivnup]

jessielf, I am so sorry about your mom. I will be praying as we speak for Peace and Comfort for all of you. Also for the strength and courage needed at this difficult time. {{HUGS}}

 

[Okie2]

Are you involved in an ALS clinic? It could be possible to get most testing done at one place maybe in a day or two.

 

[jessielf]

The closest als clinic is over 2 hrs and has only been to it once and will be going in a few weeks because she has gotten worse. Other wise her neurologist is the seeing her every couple of months and she's the one who has her going to all the appoints which aren't in her building so she has been seeing various specialists/drs this month. I'm glad they are taking what is happening w her as a top priority though instead of waiting months and have been getting her in.

 

[CoachMeg]

As overwhelming as it all is, i am glad that your Mom is being treated well. I was using all of my time too to take care of my husband, but I wouldn't have it any other way. I was able to get sick leave donations from my coworkers so that I can continue to take time off as needed. It has been a godsend, especially now that we are on hospice. Is it possible for your Dad's coworkers to donate time to him?
Wishing you all the best
Meg

 

[jessielf]

Meg- That's really nice of your work! Unfortunately I don't think his coworkers will or can donate. They are all young w families w young kids so they use them on themselves. I don't exactly know the policy of my dad's work regarding sick days. But his boss and coworkers are very nice about having him leave work for my mom.

 

[Jellycat]

Our service wasn't a co-ordinated one either and that does bring more hospital visits. On the other hand our only experience of a one stop shop, though good, was also challenging on the time front but for different reasons:travel followed by 6 hour wait followed by consultations followed by travel with no arrangements in place for hoist assisted toileting. Though it isn't easy to get the time off work I am glad your mom has their attention. I wonder if it would be possible to ask one area if they could bank an appointment on the same day as another you already have? Sometimes it's worth asking.

 

[jessielf]

I think they are getting her in and I don't quit know if all these appoints are at the same place or not. But hopefully after these appoints this month she shouldn't have that many just her neurologist appoints. I think everyone tried to squeeze her in asap and I forgot to mention that some of the appoints that are popping up are from previous appoints already this month.

 

[Chase_Corin]

I can only imagine how many appointments that would turn into.

I live in Rural Canada and the hospitals have been smart about how they treat ALS patients. My dad goes to what they call an "ALS Clinic" once every 3 months at which he sees the Nurologist, Physio Therapist, speach therapist, breathing specialist and all the added people that they need to see. You might ask your primary care doctor if there is anything like that accessable to you.

We of course have extra appointments to take dad to like Physio and doctors apointments but having all things for ALS together makes things so much easier to mannage especially since we drive almost 2 hours to get the the ALS clinic and where his Neurologist is.

 

[joni51]

Makes it so much simpler to have all the appointments where you see all at the same time...

 

[Katie C]

Another thing to remember... during the diagnostic phase and the time immediately post diagnosis, there are a LOT of appointments and they can be very close together. After the initial phase it will likely settle into more of a quarterly routine, so even if you aren't seeing everyone at once you can probably work it so that it's a week of appointments every 3 months. That part does calm down unless there is a change or emergency.

 

[jessielf]

I know she has another appoint for her oxygen and to make sure her lungs are staying clear next month cause they are worried about her and wants to keep an eye on her. They are afraid she will get phenomena. I know she will have to a sleep study but don't know when. At first my parents were sort of against the consultation for communication devices but its free so they are going to that, I am just worried that she won't want a device to communicate w in the future. I think she won't have a swallowing/speech appoint for awhile and I don't know if my mom would even want another one of those appoints. The Dr at the ALS clinic says she can just see her neurologist and just sees them yearly. My parents also are worrying on how much all this will cost and whats covered or not like any of the devices for communications. Besides my dad's insurance the help my mom could get is up to 2800.00 a year for things that she needs don't know what that help is called but I think its from the state. If my parents have to pay anything for expensive things they won't get them.

 

[Katie C]

I'm going to jump in and say if your mom has bulbar onset I'd get that speech/swallow study done. Glen's speech therapist was our best source of information on thickeners, safe eating habits, etc.

 

[jessielf]

She already had her appoint for speech and swallowing and they discussed it then and probably will discuss it more w her neurologist and the ALS specialist in the upcoming weeks. She got a sheet of paper too about how to eat and drink.