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craghill

New member
Joined
Dec 26, 2013
Messages
4
Reason
PALS
Diagnosis
11/2013
Country
US
State
WY
City
Powell
Really wish I didn't need to join this group, but was diagnosed with ALS end of November. First thing I did was to take two weeks off work and take my three year old grandson to Disneyland and then up the coast to visit my brother.

Now it's time for me to research what I can do, and these forums have been so helpful.

Thanks! Debbie in Wyoming
 
Hi Debbie,
Welcome to the forum but so sorry for your need to be here. One of the things my dad uses to help provide him with nutrients is to drink Boost. It might be something you could try or even Ensure. You might discuss with your doctor about getting into a clinical trial too. My dad is 79 and has ALS but I am not his caregiver so I don't know as much as the rest of the group on here. Feel free to ask them any questions that come up . They love to help out when they can and give support. Kim
 
Thanks Kim. Any suggestions are appreciated. The closest ALS clinic to me is near Denver (I am in northern Wyoming) and my daughter and I have an appointment there next week. Looking forward to learning what I can.

deb
 
Sorry you had to join our club, but welcome.
Hollister
 
Welcome to the club no one wants to join, but you will find it is the best place to be anyway.

I am sorry to hear of your diagnosis. I must say I love your attitude of just dropping everything and taking time for fun with your granddaughter!

There is a gold mine of information here and a wonderful support network to become part of.
 
Thank you for the welcome! deb
 
Welcome! Nobody wants to be here but people are great and supportive. The clinic will be most helpful.
 
Welcome Debbie; I hope you find this forum as helpful as I have. I used it as a reference when we built our house so that my husband would be comfortable, as his disease progresses. Our favorite thing is the bidet seat on the toilet that assists with BM's and hygiene. We also had ceiling lifts installed in the bedroom and bathroom, and open areas where transferring would happen. I had drawers and shelves installed in closet so that dressers in the bedroom were not needed, giving him more room to maneuver his motorized wheel chair in.
 
Really good ideas - love the idea of a bidet!
 
Welcome, this forum has helped me through a lot of bad times sine June, just knowing that there are others out there with the same issues helps a lot.
 
welcome Debbie! Life does go on :).
 
Hi Debbie. So sorry you are here with us but this forum is the best place to be. You will find so many caring, compassionate and understanding PALS and CALS on this site. You are not alone - we are all here for one another.
 
Welcome to the club no one wants to join, but you will find it is the best place to be anyway.

Tillie

Wow... What a perfect quote.... I am very early in the disease and very slow in progression , I feel blessed by these facts and am already finding that while I am joining the club that nobody wants to join it is exactly where I need to be. For the last 15 years I have been in the military with an extremely high "OPTEMPO" in other words, I have been extremely busy doing a virtual plethora of various tasks in order to take care of each and every Soldier and family member while accomplishing the mission that I have failed to take care of my own health. I have lived on coffee and snacks while cramming for the next meeting or operation, worked 12-16 hour days, deployed, breathed smoke from burn pits when I should have stayed inside or put on a gas mask and done hundreds of other things for others instead of taking care of myself. Now for all of that, I get dealt a bad hand and have to fold. But it is all in God's plan, all for the greater good. I can now be in this club, finally leave work and start beginning to know my own children better than I already know each of my Soldiers.

This is exactly where I need to be... Getting back to what is truly important and while ALS sucks and is fatal... Life itself is fatal too.
 
Welcome to the club no one wants to join, but you will find it is the best place to be anyway.

Tillie

Wow... What a perfect quote.... I am very early in the disease and very slow in progression , I feel blessed by these facts and am already finding that while I am joining the club that nobody wants to join it is exactly where I need to be. For the last 15 years I have been in the military with an extremely high "OPTEMPO" in other words, I have been extremely busy doing a virtual plethora of various tasks in order to take care of each and every Soldier and family member while accomplishing the mission that I have failed to take care of my own health. I have lived on coffee and snacks while cramming for the next meeting or operation, worked 12-18 hour days for months on end, deployed to Iraq for a year, breathed smoke from burn pits when I should have stayed inside or put on a gas mask and done hundreds of other things for others instead of taking care of myself. Now for all of that, I get dealt a bad hand and have to fold. 8 am happy to fold... It is someone's else's turn to do all of the set hinges, while I turn my gaze back to what is important.... My children. I thin it is all in God's plan, all for the greater good. I can now be in this club, finally leave work and start beginning to know my own children better than I already know each of my Soldiers.

This is exactly where I need to be... Getting back to what is truly important and while ALS sucks and is fatal... Life itself is fatal too. Some die miserable of old age and millionaires, I would rather die of ALS, broke, and surrounded by family that loves me.
 
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