CALS Roll Call Continued

[Janis J]

It's been four weeks since I last checked in here and just over two weeks since Douglas died. I'm doing remarkably well, all things considered.

Douglas and I had a good chat the day he died and told each other how much we loved each other; it's such a relief that we got to do that. I've continued to see the counselor and he's been very helpful. There were lots of family members in town for a few days, mostly staying elsewhere, and my youngest daughter, who is 31, stayed for almost two weeks which was very good for us both. Friends and neighbors are checking up on me and I'm planning to get back into some of my old activities.

I had expected to be a CALS for at least a couple more years, but now I'm finding it very hard to read the forums again and can't believe I was in the middle of all those problems so recently. My hear
t goes out to all of you wonderful people.

Janis

 

[Buckhorn]

Well, I missed Wednesday again, but am up late and early Thursday morning is close .....

Janis, I am so sorry to learn that Douglas died. I am glad that you both got to spend a good day talking with each other before he passed on. That is so important to be able to say those I love you's, and some final words. I hope that his passing was not too terribly frightening for him or you, although I really can't imagine it as anything but that! I am glad to hear you have been seeking the advice and counsel of friends and a counselor.

I have not checked in here for awhile myself. Terribly busy, extremely tired, and my PALS has had a rough couple of months. After surviving a large, "saddle" pulmonary embolism on vacaton in April, a recent repeat chest CAT scan revealed the PE is gone. Good news, but the reason we had the CAT scan done was Dave has been having trouble breathing, especially if he trys to sleep lying flat. I purchased a large wedge pillow and that helps him quite a bit, but I have to get moving on a hospital bed or some such! Anyway, we spent 5 hours in the emergency dept. at our local hospital last Friday, due to Dave's increasing SOB and the strained / stressed look on his face. After several EKG's, chest CAT, cardiac enzymes, etc., the ER left us go home with the knowledge that the saddle PE was gone and Dave was not having an MI. We were set up to see a pulmonary medicine specialist, and we saw him on Tuesday. Not surprisingly, the pulm. doctor is most certain that the SOB that Dave is experiencing is due to diaphragm weakness. He is coordinating with our neuro., and Dave has been set up for an overnight, lab supervised sleep study, full pulmonary function panel, blood gases, etc. I think all of this news hit Dave very hard. He is a very stoic guy, and despite me telling him we can talk about anything related to ALS that he wants to talk about, he rarely does. I know that he is scared. I know that hearing what the doctor had to say was what we had feared, but we were hoepful that maybe there was some other medical issue/complication involved. So sad to see the love of my life deal with this. During our 37 years together, I have NEVER seen him cry - but Tuesday I think he was close. Today was a better day. Less stress, pretty day outside, and Dave did a tiny bit of pruning and fussing with his plants. He sounded better today, and actually smiled a few times! We spent the evening with a glass of wine on the front porch and watching the fireflies......

My heart goes out to all of you CALS and PALS. I can understand your struggles, stresses and daily fears! I read many of your stories, but I'm too busy to offer much advice or to console anyone.

 

[Staying strong]

sending good thoughts janis... its still sinking in that 10 days ago my Sweet Liz passed on...After 5 years of caregiving im still not sure what to do besides Miss her horribly..Stay Strong everyone and enjoy every moment you have with your loved ones

 

[Angeljo2]

Re: PALS roll call Wednesdays ( or whenever)

Still here hubby has been in the hosp. this week getting out Friday we hope, had a little resp problem, but doing better 0

 

[Narrowminded]

Janis and Staying Strong - my condoluences to both of you. I'm so very sorry.

Sue

 

[scaredwifetx]

It's Saturday morning but just now able to check in. Long and busy week.

I just read all the posts and got caught up on everyone. Janis sorry for your loss. Same goes to you Staying Strong. Angeljo, I hope it's slowed down for you and the hubby. Soonerwfie I hope you have a great trip. I was in Tulsa only for the day for a conference but actually met a husband and Wife from Cleveland. We have to do dinner next time I am there.

For the rest of the Cals, do know how much I appreciate the support you give here.

Stve had clinic today and had losses in several areas. He lost weight, his breathing is worse, his strength in arms and legs is down. I got a report of the breathing tests but can.t make heads or tails out of it. Does anyone know what MIP is on breathing tests? It went from -97 to -27. His fvc shows 69% which is down from previous visit. Was a good clinic and everyone is so nice but it was hard to see the changes. Overall the docs were very positive.

I hope everyone has a good week ahead.

 

[affected]

Scared sorry to hear more losses.

MIP usually is done with a MEP - Maximal inspiration pressure and maximal expiration pressure. This measures how well the actual breathing muscles are performing.

The FVC is the forced vital capacity which measure the amount of air forcibly expelled from the lungs.

So the tests go together to give a more complete picture.

I will try to catch up with the other posts here soon, so much happening with everyone!

 

[Nuts]

It's been a busy week and I missed Wednesday. So many losses, I'm so sorry to read of them. It breaks my heart, but I'm so grateful that we have each other.

We had a good week, welcoming a new grandson to the family and finally acknowledging that Matt has shown improvements since starting Lunasin one month ago. I've written about that in the "started Lunasin trial" thread.

Matt's best friend is visiting from Colorado and that has really perked him up. Darryl is installing the pool lift on the dock, and if Matt has the strength today we may just get him onto the boat and/or into the lake once again today.

The only thing that dims my joy today is the pain that so many of my loved ones here are feeling. I wish us all a reprieve...

 

[Aussiemndcarer]

Before the week is finished, I'm just touching base. You have all been on my mind. Jains, I'm hoping that the days get better for you. I hope all the joy the living can bring returns. Becky, I'm continuing to have hoist problems. Does my head in trying to get my pals into a hospital bed, so I've given up for now. Going to get a couple of nurses to come out and try to transfer my pals . We have no problems in our bedroom as we have been using a hoist for ages now, but every new stage brings with it anxiety, until we master things!
Buckhorn, sad to hear that your pals is experiencing more diaphragm weakness. My pals presented with very early breathing weakness,so We have learnt to live with machines,face masks and back up batteries for over a year now. I send strength your way and to anyone else watching their loved ones struggle to breathe. We manage ,and I allow my Pals to take control of when he needs his mask.
He uses his whole upper torso to get air and at times I wonder where he gets the strength from,but he knows when to connect with his machines. The clinic doesn't even test his lung capacity anymore. (Annoys me a bit) we have had tremendous assistance from a respiratory clinic early. So, we've had machines ready as my pals declines. One on his wheel chair, one portable one for the car ( back up ) ,and one by our bed. We also have a cough assist machine. Lithium batteries and a generator!
By the way, have a better week everyone, thinking of you all.

 

[affected]

Aussie we had an OT that taught me how to use all pieces of equipment. Did you get your hoist through MND WA? You would have used an OT to put the order in?

I found it invaluable to have an OT visit when changes would happen as she could really demonstrate well and problem solve to work around each change.

I hope you get it sorted, being able to hoist and get our PALS comfortable into bed is one of the biggies for both parties!

 

[Aussiemndcarer]

Tilli,
We have had great help from a OT, but my Pals is just so anxious when I try and place him on the bed. He cannot turn once he is down on his side,and doesn't like the feel of the mattress ( it is an alternating pressure type) he cannot go on his back,he has to be connected to his air at all times of transferring, he literally panics ,so I have to hoist him up again. He wants to turn a couple of times each evening, so in our bed I help him, but with a lot of wiggling. We have silk insert sheet,silk type clothing and even so , it is challenging.our double bed has so much more room,so I think that we will stick to that for now. If at first we don't succeed,try again......some other time I guess. We don't have too much energy left on most days.

 

[affected]

Aussie, sleep is so important isn't it!

Glad you have an OT, but I can see that shifting like this at night is very difficult.

By the time my Chris was in a hospital bed (with alternating mattress) he stayed in one position all night as he didn't have a bipap (his choice) and could only sleep semi-upright on his back. Even slightly on his side caused too much shoulder pain.

If your own bed is working for now, we go with what works! I hope you both get some sleep tonight xx

 

[Gembead]

I'm still here but very busy trying to get the last minute things done at the new house before we move on the weekend. Our wheel chair car has been in at the mechanics for the last two weeks, trying to work out a fuel flooding issue on the starting up of engine, so poor BJ hadn't been any where this past two weeks and it dosnt look like it will be fixed before the weekend so we will have to get BJ into our normal car and take his power chair over in the removal truck. We also have a leak some where in the water supply at the new house as we have our own water supply and the pressure pump keeps coming on. I have to pack the house this next two days, so feeling very pulled in all directions. Looking forward to things slowing down and having some quality time with BJ. Love to you all.
Gem Xxxx

 

[Michellesews]

Heels everyone...here it is Thursday and I missed call again. I don't know why I don't seem to make it. Al has been going down steadily. He can no longer stand at all, both hands useless and he is on his Trilogy 95% of the time. Transferring him from recliner to bed via the Hoyer has become difficult because he cries out for the Trilogy in the middle of it all.
I had the lift removed from the Pilot because I can no longer transfer him into the car, he fell two Sunday's in a row in the driveway and it was a nightmare. He has been stuck in the living room now for 6 weeks.
I am working on getting a van through the VA and PVA in which he can drive his power chair right into the passenger side. I'm hoping to have it next week. We have both missed going to church and church functions.
With this monster, ALS, I just can't get a step ahead. Seems like as soon as I figure out a solution to one problem, another larger problem presents itself. I feel like I'm crawling up a gravel hill and when I finally make it to the top, ALS kicks me in the teeth and down I go.
I was not able to get hospice because of the Trilogy. They will accept him with it, but they won't pay for it and Medicare stops paying then. We are trying to see if the VA will pick up the cost. Until then, we just keep crawling up that gravel hill!

 

[Narrowminded]

Hi All,

Started a new thread with my current issue. Otherwise things are going well as can be expected. Still sleeping and I definitely give credit to the computer helping with communication.

Michelle - I'm so sorry to hear of your PALS decline. I remember those days all to well. Unfortunatley the gravel hill doesn't even seem to level out. May a little here and there. Hugs.

Gem - sounds like you will have your hands full these next few days. Praying the move all goes well and that the van can be fixed in short order now.

sue