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KatieNBoyd

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So since the diagnosis we have just sorta stumbled one month to the next in sort of a haze. My PAL is now down to 130 pounds (in June he was 155 still against the PEG idea) even after eating a lot the last few days with holiday food. Currently we just scheduled doctor appointments (his naturalopathic Dr) and two weeks ago went on a little weekend holiday (the drive there took 3 hours the drive home was 5 hours due to weather and bad roads). We are going to go to South Carolina for his mother's 90th birthday in three weeks. So we have been planning little things just one month to the next. We have a 14 year old and she and I signed up for a trip to Boston, Philadelphia, DC and NY for a week the first part of June of 2016 And it has already been paid for. It was scheduled back before this ALS beast was diagnosed. What do you do about long term stuff? We have a college graduation in May 2016. This weekend he has slept most of each day, today I think he was up only a total of three hours. We had a very low key Christmas. His sleep study is January 11, and we don't meet with the ALS clinic again until late February early March. The cute/funny thing that did happen was when we were all sitting around the table on Christmas eve. He was helping assemble little paper train pieces for a game. We were all talking (he wass listening) and there was something funny said, a few minutes after that he giggled (like time delay) it happened again a little bit later when we were talking about a bad driver around here. A beautiful smile came with the giggle and I saw a glimpse of his beautiful eyes and he was there for a second and then the ALS face took over.
 

lgelb

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Katie,
So you see he's still there.

Re planning, the short answer is, don't make plans that can't be undone, esp. if a financial penalty is involved. Savor the moment, try for the big scores but don't depend on them for your family happiness.

Best,
Laurie
 

scaredwifetx

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Katie,
My Steve was diagnosed in late July and I know exactly what you are talking about. I kept so busy the first couple of months that one month just slipped into two months. I also think that planning things for the future is important to both of you as his believing that you can still have some semblance of a normal life. Laurie is right about not making plans that can't be undone. This decease takes it's own course and planning to far into the future without making sure the plans can be cancelled is not advised. Steve gained weight after our first visit by eating a lot but has lost it all again and is stating that eating so much is starting to be a chore.

Take the short trips and remember that our Pals do get tired a lot easier and have days of ups and downs. We will also have those days. It is hard at times and some days I find myself in denial even now. At first I was so in shock that I was having a lot of bad moments but I am doing better nd Steve feels better when I am not obsessing about the future.
 

Deety

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Hi Katie,
That's what I have found so frustrating--we just can't plan anything. When we got the diagnosis, we planned out four three to five day weekend trips. We managed the first one, then our big holiday was a disaster, and the short third holiday without me was even worse. Now we're cancelling the rest of the trips. Even family get-togethers can't be counted on as the chaos of lots of kids gets upsetting or there are more than the usual problems eating. A lot of it, too, has to do with friends' and family members' lack of understanding. They care so much and then are shocked when they see us and don't know what to say or how to behave. Then somebody starts crying. It's a whole new way of being in the world and it takes some getting used to (at least for me).
 

Nuts

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Katie, this is a(nother) tough issue. You certainly have to be flexible, and it's better to under plan than over plan for activities and interactions. It's tough to be too flexible when you are traveling, since you need to reserve accommodations and wrangle equipment, but even hotel rooms are now refundable if you pay just a little more. Fatigue is a tough one. We tell people up front, whether they are here or we are traveling, that we will have limited time during the day and they need to be prepared to enjoy themselves without us once we retire. No one really understands until they experience you not emerging with your pals until hours after they start looking, and boy do eyes open wide when we head for bed at 6pm. I just explain that we're up a lot during the night and we try to make up for it be starting early.

For important events like graduations you need a plan B and maybe even a plan C. If your PALS is traveling with you, who is going to help? What are your plans if he is exausted and can't get out of bed on the big day? Who stays behind? What if he can't travel? Is there someone who can stay home with him? If not, you need to let people know that you might have to cancel at the last moment. Perhaps someone could Factime or Skype the event for you.

Eventually you may start to see a pattern with what I call the catch up days that he spends sleeping. If you can see how much exhertion brings one on, perhaps you can encourage him to conserve his strength going into those big events.

I amazed at how we've changed what constitutes a full day. One event/outing/event/task is a good plan. If you get more, consider it a bonus.

Hugs,
Becky
 

affected

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Totally tough because we can't predict progression. Progression has two aspects - the body part and the speed. We just can't say when weakness will begin in a new area of the body let alone how fast any parts will weaken at.

My Chris was so rapid we never really got to do anything together. He visited his sister twice, once just after diagnosis and then a few months later. In that short time he went from being able to drive there (16 hour drive) to having to fly. When he returned he knew he would never go again.

We never got to do any trips or anything. We planned one weekend away, but both times had to cancel it as he had falls that preceding week with injuries.

So all you can do is try to plan with lots of room for changes/cancellations and not too far ahead. If you can completely change something then yes plan to do it. The shorter range planning you can do the better as you have an idea what level of needs there are in 2 weeks time (even that can change we know) when you may not have a clue what they will be in 2 months time.

I love the way he shone through that smile, hold on to that xx
 

swalker

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I will share what we have done.

After diagnosis, it took about 2 months to stabilize our emotions and make essential arrangements (disability, medical, etc.).

After that period, we decided to put in place plans for an aggressive amount of travel to some of my favorite places.

We were aware that time was of the essence and that doing these things early would increase the value of the experiences, as we could tell my mobility was waning.

We planned many trips, two with durations of three weeks. All of the trips could be rearranged or cancelled with costs we deemed acceptable.

We took all the trips, which was more than a little surprising. I enjoyed them all and am so glad we embarked on the adventures. All of the trips had challenges. I had to sleep an amazing amount. We could not drive as far in a day as we used to. We had to choose hotels carefully.

Most importantly, we had to be mellow and not get excited about things that went wrong and could interfere with the trip. We were there for the experience, and tried not to get upset with the many things that went wrong.

There were many obstacles and we worked together to overcome each. We never gave up, but were ready to cancel each trip at a moments notice if necessary. We came really, really close to cancelling a couple of trips.

One of the most important decisions we made was to ignore the advice of the doctors regarding moving. The doctors want us to move to a substantially lower elevation. I love living at higher elevation. In particular, I love living where we do.

Rather than spending the last year selling our house, buying another, moving, and getting settled into a new community, we decided to spend it visiting family and travelling to my favorite places. So far, this has been a very wise decision.

I am sure we will eventually have to move and I regret the burden it will place on my wife, family, and friends when the time comes and I am essentially unable to help (though, I will certainly be able to supervise;)). But, they all know that it is worth it.

Everyone's situation is different. The plans you make will surely differ from ours. I think the key point is to acknowledge the reality of the disease, make plans that provide value to you, and have the flexibility to alter those plans as necessary to achieve your objective.

Steve
 

KatieNBoyd

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Thank you everyone for your wonderful thoughtful advice I so appreciate it. I will try to continue to dial it down as we are doing now. Just taking it a day at a time. He is very excited about the trip to South Carolina to see his family. That gives him something positive to look forward to.
Katie
 

pdcraig

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Hi Katie, I don't know your situation but in addition to the lower energy levels, my PALS has pretty major depression and anxiety issues. We've cancelled/ cut short more plans because of those than any thing else. I let everyone know it might be a good day or it might be a bad day and try and roll with it. So far that seems to be the best way to plan things. His default answer to everything is No, but I can normally coax him along. At least for a bit.
 

affected

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The variability of every PALS always makes answering questions of what will happen so difficult and the various replies here really show that. And that's the power of a forum like this - we can have the benefit of so many of the variations.

I think that a PALS who has retained good mental/emotional health is in a far better position to plan things with because you can plan realistically, make contingencies, recognise when contingencies or cancellations are going to be needed and do all of this together and with enjoyment. It makes all the difference in the world!
 

SLAUGHTER1555

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Hi Katie
My PALS was diagnosed May 2015 and it was a shocker for us as well bout time we found out it was ALS he was already bulbar onset and his walking was affected. We usually travel every summer but this summer it was not possible because he progressed so fast. We went from a rollator walker to the wheelchair fast and surprisingly he was the one always wanting to go. We had to stop traveling due to financial reason as i had to stop working and his income paid the main bills, now he does not walk at all and we have a powerchair but no vehicle for it. So we still go out though, Walmart and Kroger is our outings now lol and when we go in he cant stay long as he gets tired just riding in the electric scooter. The one thing i would say with dialing back on the traveling in my experience is it wares you out as the one doing the transporting. I had to tell my PALS that i need a break its hard for me to get him in and out of the car with no help, he does not like that as he wants to go all the time but I have to preserve me. You may not have the financial issues i have so it might be a lil different but I had to pace myself or he was going to ware me down. I usually let him decide most times what are where we go even if its to the mail box just to get him out the house. The last thing i learned well he had to learn about always wanting to go is his immune system is not the same and going out in the bad weather was not good as my PALS have a cold now that i am fighting and so do i so its lots of things to consider ultimately you will get a program and what works for you and your PALS. God Bless
 
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