If I could re-do the first 6 months after my diagnosis, I would....?

[Kirk]

I am fairly new to the forum being diagnosed 8/12/2010. I would love to hear some words of wisdom from those of you "ahead" of me on this ALS trip. What would you do different or perhaps keep the same after you were diagnosed (ex trips, conversations, purchases, etc). I am trying to maximize my time each day...before getting "locked in". Thank you in advance for your input!

 

[joelc]

If there are things you have always wanted to do then make them a priority. We went on several cruises and were very glad we did.

It could be years before you find you are not able so don't panic.

 

[Cathy1252]

A dear coworker has just been diagnosed with ALS after months of being treated for a spinal nerve problem(including surgery). What can we do to show our love and support for her?

 

[Ellamay]

Kirk, there are so many things that we wished we could have done .... My husband lost his voice and it would be so nice if I could hear his voice again.... we laugh sometimes his Mom and I because if we were to hear the Dynavox "voice" we would think Tony is talking to us.... So record some video of yourself and do tons of fun stuff ! Travel .... we were able to take only one trip just prior to his diagnosis and we so enjoy those memories. ... Disneyland all the way ! lol! Arrange all your legal stuff.... will, advance directives, paperwork etc.... I am so glad that my husband took care of all those things so I didn't have too...... Enjoy all that you have and want to do .. ...

 

[Tokahfang]

The biggest thing I would have done differently is to jump feetfirst into assistive devices sooner. I wasted a long time hobbling on canes and crutches when a wheelchair would have (and did when I caved in!) opened my life up. Use whatever makes your day work the best, your hobbies and goals the easiest to attain, and don't worry about looking crippled. A hobbling walkie looks a lot less fly than I ever have since.. instead it's all compliments like "nice wheels!"

That said, progression happens, so develop some more cerebral hobbies as well.

 

[pops66now]

Kirk, like Joel said, go on a cruise take a vacation. If you have family take them. If you like to swim, fishing, play ball you better
do it now. I sure wish I had done more with my adult children when I found out what I had.
Wayne

 

[Katie C]

we took a family vacation... I wish we'd gone sooner and more often!

 

[abbas child]

Kirk, I wish we'd begun remodeling the house asap, widening some doorways and making that house work for the new world of wheelchair living. I progressed slowly enough that we could have stayed there.

However, your progression is far different from my own, and I had no bulbar issues. So, for you, I'd think recording your voice soon, so that your wife and children can still hear you would be great. And yes, do the legal planning now, teach your wife how to do those things you've always done, and then just spend time together as a family. Make sure you share your thoughts with your wife...

 

[Lavender Lady]

Hi Kirk, You and i were diagnosed a day apart. We are planning a trip to Hawaii with our kids in January for 2 weeks. I am so excited! I won't be able to snorkel but I am o.k. with that. I am a quilter and have a few projects i am determined to get done while i still have use of my right hand and some on my left. Nearly everyday i either have someone over to visit or I go to them while I can. I love to cook and i am making some wonderful meals for our family and friends to share together, even though my husband is having to help me more in the kitchen which he does not mind at all. I plan to make pear bread to share with others through the holidays. I am spending a weekend away with all 4 of my sisters just to be together. I have started going through some of my personal things while I can and have started giving a few things to people that I wanted them to have. Spending each day with my kids and husband. I feel very blessed and am grateful for the opportunity to get the chance to do all of this.

 

[KC2U2]

Thanks for this posts and the responses, I will definitely follow the suggestions.

 

[tomby]

Hi Kirk,
I've been diagnosed about a year now. One of the first things we did was plan a big family vacation, we almost waited too long, but I was able to scuba dive with my older kids, climb a mayan pyramid, jungle zip lines. it was great. Since then we have taken a number of smaler trips - reconnecting with old friends. Other things- I recorded my voice into Modeltalker, which was free.
The other thing I did was to get by myself with a video camera and record a personal video for each of my kids and my wife, put them on individual memory sticks and lock them away.

 

[Kirk]

Wow! Thank you so much for the input so far! Great suggestions! Please keep 'em coming

 

[Lavender Lady]

tomby, great ideas!

 

[Alyoop]

I have pls rather ALS but it can change at any time. I am at present sitting with my dear husband in an apartment in Barcelona. We have just had a wonderful day visiting the architecture of Gaudi and looking at the weird paintings of Picasso. We are doing this trip (Hopefully the first of many)because we don't know what's around the corner.

Next week it's Seville then Morrocco! Do what you dream of. You may never get the chance again. If you do, do it again.

 

[rcharlton]

travel as much as you can afford

Voice banking if you always want to be able to speak with your own voice - search modeltalker

Don't waste time and money with expensive supplements or alternative therapies

Take some deep breaths and try to relax - you will adapt