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MyNexus2U

Member
Joined
Mar 9, 2016
Messages
19
Reason
PALS
Diagnosis
05/2016
Country
US
State
Oklahoma
City
Tulsa
It is probably my fault. Like the rest of you know if you get behind it can be a struggle to catch up. We are struggling with bathing, and getting me up if I fall. It is a lot harder than it should be but we are still getting by. I can still make transfers and walk short distances, but when my legs become fatigued I better have a place to land. I rely on a manual wheel chair most of the time because of this. I have to avoid chairs without arms rests as I need them to get back up.

First of all, I do not have the diagnosis of ALS, just suspected. I try to live each and every day to the fullest, focusing mainly on living as much a normal life as possible at this stage. When the day is over I search for available resources or benefits that may be available to us now as well as what may be pertinent in the future. I am trying to be proactive not reactive, especially while I am able.

In the past three years I have been struggling with severe depression and even had to be hospitalized for a short time. Medication works ok but the bulk of the recovery has been therapy. I have learned acceptance and coping strategies as well as ways to slow situations down in order to convert what I am feeling in the moment to positive actions or decisions. I have been blessed with two of the best therapists at the top of their game.

I have not been able to drive since December. I get all of my care at this point through the VA. I have complained some about this. It is not that they do not provide care, it is that they are overwhelmed and a great deal of your care hangs on you. What I mean by this is that if you do not know exactly what you need and when, your help will be slow in coming. They have been doing a good job up to this point just slow. Mainly just because we did not know how the systems works. That being said we try to make the most of each trip getting as much done as my wife has to take off work for some appointments.

My son has been helping get me around but he has two daughters that are ages 4 and 3. The three year old is special needs, just what is going on with her we are not sure and are dealing with that as well. He lost his job in December and him and his wife have had to move back home with us. We have plenty of room so this has helped everyone so far. His wife works but does not have a drivers license yet so he has to take her back and forth to work. Tonight his car broke down, it is going to be a costly repair.

I have a second diagnosis by MND specialist at a ALS clinic in the works probably sometime this month. We have been compiling records, notes, and data (MRI Images, breathing tests, EMG) in preparation. All we need now is the appointment. We have our first support group meeting coming up in a few weeks as well. A lot going on to say the least. My wife is overwhelmed and not getting enough sleep.

My son does what he can but he is busy taking care of his daughters. He is a stay at home dad at this point. He takes very good care of his girls, unlike his wife who is no help to anybody. They are having problems but I think she is so focused on her self she is oblivious. I have placed a shortcut to alsforums on the desktop as well as other sites for my wife to visit for information as well. I asked her last Saturday if she had had the time to look at anything. My daughter was in town and sitting next to her and she ripped my head off and told me she did not have time. We had an appointment scheduled for today so she scheduled the day off.

We had to move the appointment up to last Wednesday for availability purposes. We had a near miss by a tornado Wednesday evening (1/4 mile from house) that caused her to lose more sleep. So today she went ahead and took the day off to rest which I encouraged. She pretty much did her own thing for most of the day mostly playing games on her IPad. I am ok with that, what ever it takes to unwind and relax.

Late this after noon I asked if it would be possible for her to get me the car and house insurance information in a day or so I could get a quote from USAA as I am a vet and compare it to what we have. Nothing like a tornado or earthquake to make you think you should check on your coverage. If the rates turn out to be cheaper or better insurance for the same amount this could help our children as well for their own coverage as they could become members through me. MISTAKE! BOOM! Broadside. I guess I interrupted her while she was getting drunk (she did).

We do not normally drink and this kind of scares me. It concerned my son as well. We do drink occasionally and have alcohol in the house. I have been trying to be mindful of her space but she said I was forcing this down her throat. Throat could be the keyword here as the past two weeks I have what I think to be issues with swallowing. I have been getting cramps in my throat sometimes after drinking fluids mostly but sometime food. No choking as of yet. Wednesday after a lot of talking I became very hoarse.

We have really been dealing with this for a year now. I have had symptoms longer but they did not really impact our lives. Is the reality of this disease just now starting to hit her? I love her so much. There is nothing this ****** disease can do to me that I cannot handle, but I am not sure I can watch her self destruct. I just changed my advance directive to allow a PEG and VENT when needed. The PEG I will keep no matter what as I have learned that it will help my CALS. Did I make a mistake about the VENT? She really has no friends that I know of. She says that she has some at work. For me I never had a friend at work just acquaintances. My biggest concern that when it really hits the fan she will not have the support that she needs to get through this.

very worried,
Bryan
 
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Bryan,
Assuming you get an "upgraded" dx this month, I trust you'll leverage the PVA, file with the VA and start getting more benefits? You are still eligible to file with PLS but I guess that may not matter at this point.

Your wife sounds depressed and as you say, she may lack support. I'm sure some VA CALS here will suggest some options, and I would certainly discuss w/ the VA social worker/counselor/whatever they are called. And since your own therapists are good, surely they can make some suggestions as well.

Let your wife know that you are concerned, above all. She may deny everything but it will take root and facilitate her talking with you as time goes on. Let her know that you are ready to listen, any time.

A vent decision is down the road, though I would certainly discuss BiPAP at the clinic, and updated PFTs may tell you more about where things stand.

Best,
Laurie
 
Bryan, it sounds like your wife is struggling. I can't imagine going through this without a definite diagnosis and appropriate support. Once you have your diagnosis, support from the VA should change significantly. Please read the sticky on VA benefits for PALS and then share it with your wife. It may take some of the pressure off of her to know what help she can expect (and it is extensive). There is a huge adjustment to make when one becomes the caregiver for someone with the kinds of needs this disease creates; is it possible that she has not accepted what you expect to learn at this next appointment?

I can't answer your question about the vent--no one can, but it is a bit early to worry about it. Right now, your wife needs help. There is a VA caregiver support program that should provide support and advice to her. I was never one for support groups--before ALS. Now I don't know where I'd be without them. Mine are all online, but if there was one close enough to attend, I would. If nothing else, your wife needs to be able to talk to other CALS.

I will confess that at least three times during the first year my husband expressed his concerns that I'd be able to handle this when things get hard (because of meltdowns I had). I think he is confident in my ability now, but he must have been very concerned.Don't panic yet--get her some help. I see that you have a support group meeting coming up, but be sure also find out about seperate meetings where you can each vent and ask questions away from each other.

As for the kids, they need to be more help than work if they are going to stay with you. They can raise their two daughters AND take care of your house for you (as they would have to their own). They also need to step up and help with your needs and take some pressure off of your wife. If you have ALS, your needs are much greater than theirs, and they need to step up.

Becky
 
Sorry, Bryan, for your trials and tribulations. Really hope that you can get some home support. Our ALS chapter provided great information for my wife and I and we able to start out on an even keel. Really hope it gets better on the home front for you.
 
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