Old 01-15-2008, 05:33 PM #1 (permalink)
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Red face new

:Hi All..I'm new to this..but here goes..My husband Gary has ALS, was diagnosed Jan of 06..We both retired about 6 years ago and we moved out of our townhouse into a motorhome and traveled full time all over the US and little in Canada. Last Feb we had to move out of the motorhome and into a house because he couldnt get up the stairs and the mh wasnt big enough to put the scooter in for him to get around. He is now in a power chair, can only stand for about 3 seconds and sometimes not that..Anyway we are very thankful we had the time and fun that we've had...it doesnt make things any easier, thats for sure..With God's help..I now dont look at the whole picture , I was totally freaking out and cant imagine how Gary felt..instead I just vision small "snipets"of whats happening and that is how I handle it so I can give Gary my all..He's not as bad off yet as alot of you are talking about your loved ones..but he is definatley getting worse..it's unbelievable that he cant roll over or move his feet, or scratch the top of his head, etc..i see it every day..and still cant believe this is happening.. anyway..thats our story in a nutshell and i'm so glad i found this site to visit...
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Old 01-16-2008, 12:05 AM #2 (permalink)
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Default Welcome Jeanie

I am sorry for the reason you found this site but I am sure you will find it informative, and comforting. We are all at different stages. We all have different ways of coping. I think it is wonderful that you and your husband got time to travel. I hope that in 5 yrs. when my hubby retires I will still be able to travel like you two did. My family has been very supportive but in different ways. The oldest is and has always been " If I don't think about it it will go away." Which has been the most difficult to deal with. I want her to know how I feel and why I do and will do somethings. The youngest who was the terrible teen is my go to girl now at 22 yrs. We cry and laugh and she helps out a great deal. My second grandchild is due in June. The oldest (girl) already has one that is almost 6, now she will have this one in June. When the first g'baby came I had just divorced after 22yrs. This g'baby is coming after 07 DX. I hope your family is supportive and your husband has some positive things going on around him to keep both your spirits up. I truly feel for our CALS (caregivers). It is difficult and sometimes frustrating I know. Do not worry how you handle it, just handle it with LOVE. God sends ANGELS in disguise. They might be spouses, grandchildren or strangers on a web site. You and your husband are in my prayers for more good days than bad, and for all your questions and trials to be answers. Welcome to the family I know from experience you will find caring persons here. Sherry
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Old 01-16-2008, 04:02 PM #3 (permalink)
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Default Thanks Sherry

Hi Sherry...thank you for your response and your words of support and prayers! We do have a wonderful support group of family and friends. It also helps that Gary has a great head on his shoulders, he never complains or gets ugly and seems only to be thinking of ways to make things easier for me. I'm always wondering..what can i do to make him more comfortable or can i do more..anyway...we take it one day at a time..some days are alot better than others..but that makes us appreciate the good ones! I hope you can go traveling, its a wonderful thing..so many beautiful places and things to see and do.. jeanie
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Old 01-16-2008, 08:13 PM #4 (permalink)
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Default

Hi Jeanie. Glad you decided to join us. Sounds like you two made the best of things while you could. Keep up the great attitude! Cindy
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