I don't have any good MG advice just wanted to say that I would have loved it that my daddy went to the fair with me for 3 hrs. when he didn't feel very well. I think you do alot more than you think. I always feel like dreams are a way of dumping things that are going round in our heads, well sometimes. I know your family will find a way and you will find a way to always be together even when you can't do every thing that they can. You will always be a part of each other, and just that they understand, that is huge. Wouldn't you do the same for them, to wait up a little? Your Dad, they will always wait if you need them, and in other ways you will be patient with them. Like when they are teenagers!

we learn as we go along
they learn compassion
ann

I have little to add to the eloquence above, except that a pair of hiking sticks helps with exertion and being embarrassed about what people think begins to retreat with age and exerience, so you might as well jump right in now and save some time.

Sometimes "no" is the greatest preparation for adult life that we can give a child. We all could profit by learning to be content with "enoughness." :-)

It's OK, b.

Can you take separate cars?- But 3 hours anywhere sounds like plenty to me.

You'd be surprised - how much a Rollator helps!
(a 4-wheeled walker, with hand-brakes.)

Don't be embarassed - about renting a scooter!
Your daughter can ride with you!
The 4-year-old - will love that!

And besides? You had 3 lovely hours!
(I'm proud of you! I can't do 3-hours.)

You went, knowing you felt poorly.
You lasted as long as you could!
And look at what your wife said!
Your family knows - your family understands.

Vent away - it's healthy. I would vent, if I were you too.
Decades & decades, in remission.
And now this bastardly disease - has come back.
You're a darn strong man - and one fine husband & father to boot!
(I cannot apologize for the strong word.)

When's the next fair?

I dont know what to say that can help too much.

I understand this completely and have felt this so much myself lately.

I've been trying to encourage my family and friends to go so what they want and the things I cant do or would slow tham down for I just dont go and meet up with them later for icecream or coffee.

This is what Im doing to try and not feel so quilty.

Ok. A little background. I'm 41 and finishing up a career in the military that includes active and reserve time. I will retire from the Reserve. As far as everyone that knew me was aware I was "healthy" just a couple of years ago. They had no idea how hard I was pushing. I believe that all of that pushing through definitely made my physical situation worse.

Now, the hard charging Marine and Sailor, the one others came to for help, can't keep up. And that can be worse than tripping, stumbling, dropping and choking combined. It eats at me. Pour a little salt in the wound with "but you look fine".

I am quickly learning that preparation helps considerably. And though an electric cart may hurt my pride it would have been more beneficial on one of my recent trips. I will suck it up next time and get one. Along with resting prior to a trip or whatever.

It sucks. We are not disabled. But then again we are. We are temporarily unable to do some things. I do ask of you to consider something though. Would you rather your kids and others see you in a cart or go home early? Or would you rather them see you in the hospital or heaven forbid you not be there at all for them? I know it sounds extreme. But some folks here have found out that going down hill can be a quick and slippery slope if you don't take care.

This very thing with travel, house work and everything else has been and still is a jagged little pill for me to swallow.

If it were your wife or one of your kids what would you suggest they do? If you think of that I am sure you will have your answer of what they would want you to do.

Kimber

o.k. Now you guys have me crying at work. Thanks for all the kind words. You guys all seem to know the right things to say.

Thirteen- Those were very beautiful words. Thank you. I needed that.

Ann- I thought I had it all figured out because I went through it as a kid. I'm learning that its a different world with a family of my own. My wife and kids have been very supportive and compassionate. At time it can make me feel kinda worthless though.

bweeds- I need to get over it. I didnt bring my cane because I dont like the way people look at me. I saw a couple of people with the hiking sticks and got kinda jealous. :)

Sarah- We almost did take 2 cars. My wife wanted to go together. I think it bothered me more than the rest of the family that we had to leave. I wanted to stay longer too!

Ross- I wish I had half the positive energy you have! My neuro talked to me about one of those rollators. He told me that even the lightest canes can become heavy to us. I even went and looked at them at Wallgreens. I just could not bring myself to buy it. I really need to work on this stupid pride of mine. Its not doing me any favors! It kind of feels like if I use the cane I'm giving up. I know its dumb. But thats how it feels.

Jeannie- There have been a few times where I stayed behind. I feel like I'm letting my kids down when I dont go. My kids went to a pool party last week and i stayed behind because I wasnt feeling well. I should have gone and just sat by the pool. I honestly didnt feel like answering all the questions from everybody about whats wrong with me and how I'm feeling. That can be exhusting too!

Wow Kimber. Those last couple of lines really struck a chord with me. If it were my wife or one of my daughters, I wouldnt take no for an answer. I would insist she get the cart and take it easy. Thanks.

...and thank you for your sevice!

I swallowed my pride last dec. and got my rollator from walgreens. I have used it several times to go to museums, the zoo, festivals etc. with family. Yeah i got a lot of looks, but had a great time with family!

They let me go first in crowds as people tend to make way for walker and me, a parting of the sea..sort of. We also get front row seats, first in line etc. We joke alot about it, even has a nickname "my firetruck", cause it is red.

Seriously though having stability and a seat with me at all times has been a lifesaver. I can sit and rest while they do an acivity, or while waiting in line etc., saving my energy to do more with them.
I also find staying hydrated and well fed helps too. (along with a little extra mestinon).

An odd thing we have made temporary friends at events with other people using walkers, scooters and wheelchairs..sharing stories and such., sometimes even eat together...more fun.

Taking that first plunge is hard, but ohh the rewards you will reap!!!!!

The fact you have raised the question means you are already on the path to find the right solution for you and your family.

So many good ideas have already have been suggested..my 2 cents. Whenever I go out I always take my ipad. My family knows that on occasions I may need to take a break and find a cool place I can sit and read or blog away on DS MG. I normally always recover enough to join the family fun later on. If I dont, I had rather made the effort than to be left behind.

We all need to get out and do activities with our family and friends. Just find the right accommodations that will allow you those precious moments with your family.

Wishing you and your family the best.

Bruce

First off big hugs!!
Dealing with small kids with this stupid disease is just horrible. There have been just a few days since diagnosis that I have felt sorry for myself - but a ton that I have felt bad for my kids. It's really just not fair that mommy can't do everything we used to do.

This morning, I told my 4yo to get off my lap because mommy wanted to get herself breakfast...I then paused and said..."oh wait...I have to..." and stopped speaking. (I try not to talk about the disease etc in front of them). My daughter added in....what mommy, do you have to get your medicine? Made me cry because it is such an unfair burden and clearly something they think about.

I try to do what I can. We take 2 cars a lot. My kids take swimming lessons at the local Y. I used to take them. Now I let my husband go - and I go for the last 5-10 minutes.They get excited that I was there and I don't have to sit in the overheated area - which I just can't do. Unfortunately, I use the fact that they don't really have a concept of time to my advantage.

I never want to miss opportunities to be with them, but I do all too often. I try to choose one thing that I can save up my strength for and really be there for them. I have used things like groupon and living social to find deals on kid places that are indoor and I don't have to do a lot of walking but can share the experience. On example is those inflatable places...not a lot of walking for us - and air conditioned.

Restructuring activities takes a great deal of time and I very much hope you can find some things you can all enjoy!!!
Honestly there are no great words and my heart goes out to you!!!
Nicole

Great discussion. I too got alot out of this. My ten year old is having a hard time with me not " feeling good". Mon. we went to Kohls dept. store and he got mad about something. I just walked off as he sat down on the ground by a rack. I walked clear to the front of the store and just ignored him.

I paid for my things and still no Nicholas. I sent my daughter back, (she can jog) and she came back empty handed. I started to worry, by this time it had been quite a few minutes. Long story short people in the store joined in as well as the workers to find him.


Paige, his sister found him squatted outside the store behind a cement piller. It's easy for me to see that he is punishing me for not being the same person. He doesn't understand this, but I am sure that is why he is being so naughty lately.

I explained to him that instead of me being able to spend time with him, I had just used every nickle that I had and had only enough to drive him home to his room, to stay and think. Then since then I have tried to spend time with him, still kind of naughty, but he'll get it. lol

Last summer I prayed"please Lord let me be able to babysit my grandchildren" That was all I wanted. Today I am. My outlook on life is so much better. I am so grateful to be alive.
Ann

just want to add, on the rolllator, you can remove the back rest bar and sit facing forward. Then someone can push you around, it wheels wonderfully,good for a break from walking and yet still be with family. There is of course no back rest and i place my hands under my legs, guess you could use a towel or something to hold feet off ground as there is no foot rest either.