Preparing for first Clinic visit

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scaredwifetx

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Joined
Jul 25, 2015
Messages
1,606
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Hello to everyone. We have our first clinic tomorrow also. Suggestions on what to ask, what to expect, and what to bring. Steve is having issues with his arms, legs and balance and is now down to under 140 pounds although he has always been slim. Do they help you to get the electric wheel chair going, the lift and tell you what other things you will need to have to prepare? Do they already know what your insurance pays and who you need to go to? Sorry so many questions but I have come to trust you all and you are all wonderful with advice. I am quite nervous and do not know what to expect. We are with Texas Neurology here in Dallas because Baylor could not get us in. Think it is private but not sure what that all means. I am hoping it is a good experience and they will help us figure out what to do.
 
Bring drinks and snacks. Some clinics provide these I am told but not all.

Bring a notebook or if you prefer your tablet. Also an envelope and collect business cards from everybody including the appointments person. Make sure you have fax numbers. Find out who is your main contact person and how best to contact him/her. In my clinic it is the nurse though I can email anyone - doctor, np, pt etc-
Yes they should help you with equipment and especially the power wheelchair. You are going to want to discuss the mobility issues with pt and ot. The weight with speech and nutrition
If you are interested in research trials ask the doctor unless you meet a research coordinator ( my clinic has several but I think it is unusual)
About insurance likely they will have a general idea of what is usually covered and what paperwork is needed but they are likely to not know specifics if Texas is like Massachusetts and has lots of different companies with multiple plans and changing rules. I try to know as much as I can about my insurance but I also call to check if something is iffy and might need prior aporoval.
It is likely to be a long day but I hope you get lots of information and support
 
Word of advice- ask questions to the right people or you will be there far longer than you want. Ie - keep dietary questions to the dietician, exercise questions to the p.t. expert, questions about equipment to the o.t. , etc.
take good notes- the amount of info is overwhelming, and you will forget! The social worker or psychologist can give you good guidance about resources for support- and if you can get a few minutes alone, you can ask some of the hard questions you don't want to ask in front of your hubby. I found that support invaluable for me because she really understood the fine line caretakers walk, and she also helped me let HIM make his choices about things like the peg tube (despite my feelings that he wasn't making the best choice! ). And listen to Nikki- those snacks are important! Get lots of rest tonight! Good luck and let us know how it went. Dona
 
I want you all to know how much I appreciate everyone and the advice you give. I wouldn't have thought of 1/2 the things you mentioned as fear tends to take over. Steve told me they told him three hours so I am hoping we are going to a decent clinic , we will get the help, info and support we need. Dona, Mike and Nikki you have been so wonderful and I really admire you all for the strength you show everyday. I can only hope to find 1/2 your strength.
 
Deb, don't expect them to know your insurance. But you could get the process started for a power wheelchair rx and meanwhile check your coverage if needed -- generally a private plan will cover DME (durable medical equipment, which also includes a hospital bed, which you might also want to consider getting underway) at the same level as most other things, e.g. 70-80% after your deductible and before your maximum out of pocket -- it is just that preauthorization is required before the order can be placed.

I remember that Steve applied for Medicare/SSDI? Depending on how great the need is, you could wait until that is approved to submit the order for approval, or get it done w/ your current plan. You may want to look at whether there is a difference in benefit level, e.g. if you have met your deductible/yearly OOP max or are close with your current plan, it may pay you to go ahead now. Same for the hospital bed. If you decide to leapfrog Medicare for those, make sure the clinic and supplier know things are time-sensitive.

The clinic should know which DME firm(s) works with your plan, unless it's an unusual one. So they will alert that firm to your need, and the firm will send someone out to do measurements, unless they do them in clinic. The DME and the clinic finalize the order, submit it to your insurance, and after it's approved, the order is placed.

I remember you were talking about renovation -- talk to the OT/PT about that as you discuss equipment.

I believe there are other TX Neuro pts on the forums. You might try searching for Texas Neurology from the Search link up top.

My best clinic advice -- they work for you two. Have conversations. Be the people you are. See if this is the place you want to be. You may not bond w/ everyone, but you should leave believing they can and want to help. You have options. And since it's 11 there, if you're reading this tonight, go to bed.
 
I love you all and you have been a great source of info,support and guidance. Steve has even been listening. We are early for clinic so set and discussed things like decisions on if he wants a feeding tube. He Is torn. The big thing for him is when he loses all ability to use his hands. He isn't sure if he wants to extend things by getting the feeding tube. Hopefully we will see a counseling. We do have very good insurance through my company and no deductibles and supposed to be 100 percent. Hopefully my insurance company doesnt try to cancel him since he applied for disability. Not sure how that works but know I pay a lot to insure him and have been paying for at least 12 years. Have a great day everyone and God bless you all!
 
Hope clinic is going well for you.
Feeding tube! This will get lots of discussion I expect
My view ( often expressed here) Greg is right when he says it is life enhancing rather than life extending
My experience. My mom said no. So we spent years ( plural) with her swallowing slowly getting worse as she choked more and more on less and less food with the consistency being made more and more easy. It ended with taking an hour each meal to give her inadequate nourishment. It was exhausting and distressing. My sister went way down this road before finally getting a feeding tube. Her only regret is waiting so long. I quite honestly have some PTSD from all this The feeding tube will make life easier for both of you but probably more for you as a CALS. There is the option to remove it or stop using it. Others have different views
 
I like your advice Nikki and think that is the way will go. I am so very thankful to have my new family. You are even helping me with clinic today. I promise one day to pay it forward.
 
Hope it all goes well today! :)
 
Home from clinic and although I never take naps I think I need one. We got there at 7:30 and left at 2:30. It was long but was great. Guess it was so long because it was our first time I do have to say they were very impressed with my knowledge and preparation and that is due to everyone on this forum. I was not as overwhelmed and was ready to see different people at different stages. Everyone was great from the dietician to our case worker were very nice and made us very comfortable. Their was a lot of information and we should be getting the ball rolling with the chai, lift and bed. They really tried to let us know that Steve's care was in their hands and that we should not worry about the medical side of things. They may have him participate in a phase 3 clinical trial for a drug called Tirasemtiv. Don't know anything about it but we are willing to do it if it will help with research. will find out in a week or two. They even provided lunch. Was very impressed with Texas Neurology.
 
Great that you had such a thorough clinic day.

All I would say is they may say they will worry about the medical side of things, but ultimately all choices are Steve's and yours.

I also just wanted to say that the peg is more quality enhancing than guaranteeing a longer life. It's hard to explain as yes it may extend the life a bit, but not by years, and Steve can elect to stop nutrition through it any time. Being able to give meds directly through it became a huge bonus when I was caring for Chris.
 
Glad all went well. Hope the trial works out. It had several phase 2 trials so has been tested enough not to worry too much about safety and has shown enough promise that they are investing in a phase 3. In addition there was a srtudy showing patients in trials do better. Obviously not because they have been getting a cure. Presumably from the increased interaction with the clinic staff.
 
Yeah for a good day! Will second Tillies comment that the choices are ultimately Steve's (with gentle input from you!). Pals have so few choices with this disease, they always need to control what they can! ( I remember the aghast look on the ot's face when she learned my hubby was still using a regular razor instead of electric when his hands were so weak and unsteady. She ordered a hand strap to hold an electric razor- but he wouldn't change!)
Sounds like your confidence is increasing and you know TOGETHER you and hubby can handle this monster. Hugs. Donna
 
Hi Tillie,

I think the same thing. We need to stay educated and make our own decisions as some of the time at the clinic I felt like they were selling things or ideas and I have been in sales for over 20 years so know when it is going on. We did agree that a peg would be more about enhancing and not for a longer life. he has a goal to eat very well and try to gain at least five pounds of what he has lost back. He has always been very thin but has lost weight and now that we know how to manage it a little better maybe we can at least slow the weight loss down. His breathing test was at 90% which we think is good and no swallowing issues that are to much of a concern right now so we have a little time to think about the peg.
the main changes were in hand and leg strength. I was very adamant about getting the wheelchair orders going and the Hoyer lift ideas so they will be working on that. I need to know that he will be safe when the time comes. Now if we could just get some bids from contractors that are not sky high for the bathroom remodel. Now to sit back and try to relax tonight.
 
Thanks Tillie, Donna and Nikki. You help through this has TRULY been the reason I have done as well as I have and you are becoming a trusted family to me. It is so wonderful to know that there are people in this world like you and you can guarantee I will never forget it. Hugs!
 
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