AKjo
Distinguished member
- Joined
- Nov 3, 2010
- Messages
- 390
- Reason
- Lost a loved one
- Diagnosis
- 09/2010
- Country
- US
- State
- AK
- City
- Anchorage
Hello and thank you to all the forum members - some of you make me laugh and sometimes I cry when I get on here, but I appreciate all the valuable information I have gotten from this site. I read it daily for a couple of months before I joined, and have posted a few times, but here it is two months later and have never actually written an introduction.
My hero, my husband Gary, has a different story than many of you who waited months and even years anticipating an ASL diagnosis. He broke his back 5 years ago that required fusing vertebrae and months of recovery. The injury left him with some sensory changes in his left leg, mostly tingling and numbness in the thigh and some intermittent pain, but he was finally able to go back to work full time. He retired 3 years ago, but really enjoyed his work and could work part time up to 50 hours a month without losing his pension, so continued to do that to get away from me a little, I think. Anyway, when he started feeling a lack of balance and unsteadiness, he attributed it to the previous back injury. He went to his GP August 2009, and was sent for an MRI of the brain and back, which showed nothing. When the symptoms didn't go away, he returned in April 2010 to ask about a referral to a neurologist. He was seen in May, and subsequently had EMG/NCV tests and a ton of lab work. At the time, he was told, "I don't see anything I can treat." To us, that meant there wasn't anything going on with his back that she could fix. But she did offer to refer him to Dr. Michael Weiss at the University of Washington Medical Center for a second opinion. Since we have a daughter and son-in-law who live in the area, we are always happy for an excuse to go visit, so made the arrangements for a September 1, 2010 appointment at UWMC. She also gave him an AFO prescription for his foot drop and for PT. We NEVER imagined that the problem could be anything but his back causing these symptoms. (In retrospect, I am glad the first neurologist did not tell us of her suspicions, as it gave us a few months of blissful ignorance. We now know that when the first tests were done he only showed UMN/LMN degeneration in 2 regions.)
Fast forward to September: After a repeat on the EMG and NCV studies, and a break for Dr. Weiss to review the test results, he delivered a definitive ALS diagnosis. Talk about being floored! We thought he was going to tell us about some miracle surgery he could do to "fix" that old back; instead we walked out of there dumbstruck with this new diagnosis. You all know the rest of the story of trying to soak it all in and wondering what comes next.
Four months later finds Gary with weakness in his left leg that causes a significant limp, and some weakness also in the right leg. He often uses a cane when he leaves the house. He was seen at the local ALS clinic in December, and takes Rilutek. He has always been a pretty active guy with fixer upper projects and such, but cannot carry much by himself any longer due to his imbalance. He falls several times a week. As far as he can tell, his upper body is not affected by weakness yet, but fasciculation in his hands and arms can be seen. He has yet to tell his 3 brothers or dad (who all live in other states) about this horrible disease, but did share with our three adult children (one local, two in college elsewhere) right away.
I guess I have rambled on long enough - I should offer a prize to anyone who actually reads this whole thing! We are striving to discover delight and beauty in every day rather than allow ALS to consume our lives. Some days are better than others...
My hero, my husband Gary, has a different story than many of you who waited months and even years anticipating an ASL diagnosis. He broke his back 5 years ago that required fusing vertebrae and months of recovery. The injury left him with some sensory changes in his left leg, mostly tingling and numbness in the thigh and some intermittent pain, but he was finally able to go back to work full time. He retired 3 years ago, but really enjoyed his work and could work part time up to 50 hours a month without losing his pension, so continued to do that to get away from me a little, I think. Anyway, when he started feeling a lack of balance and unsteadiness, he attributed it to the previous back injury. He went to his GP August 2009, and was sent for an MRI of the brain and back, which showed nothing. When the symptoms didn't go away, he returned in April 2010 to ask about a referral to a neurologist. He was seen in May, and subsequently had EMG/NCV tests and a ton of lab work. At the time, he was told, "I don't see anything I can treat." To us, that meant there wasn't anything going on with his back that she could fix. But she did offer to refer him to Dr. Michael Weiss at the University of Washington Medical Center for a second opinion. Since we have a daughter and son-in-law who live in the area, we are always happy for an excuse to go visit, so made the arrangements for a September 1, 2010 appointment at UWMC. She also gave him an AFO prescription for his foot drop and for PT. We NEVER imagined that the problem could be anything but his back causing these symptoms. (In retrospect, I am glad the first neurologist did not tell us of her suspicions, as it gave us a few months of blissful ignorance. We now know that when the first tests were done he only showed UMN/LMN degeneration in 2 regions.)
Fast forward to September: After a repeat on the EMG and NCV studies, and a break for Dr. Weiss to review the test results, he delivered a definitive ALS diagnosis. Talk about being floored! We thought he was going to tell us about some miracle surgery he could do to "fix" that old back; instead we walked out of there dumbstruck with this new diagnosis. You all know the rest of the story of trying to soak it all in and wondering what comes next.
Four months later finds Gary with weakness in his left leg that causes a significant limp, and some weakness also in the right leg. He often uses a cane when he leaves the house. He was seen at the local ALS clinic in December, and takes Rilutek. He has always been a pretty active guy with fixer upper projects and such, but cannot carry much by himself any longer due to his imbalance. He falls several times a week. As far as he can tell, his upper body is not affected by weakness yet, but fasciculation in his hands and arms can be seen. He has yet to tell his 3 brothers or dad (who all live in other states) about this horrible disease, but did share with our three adult children (one local, two in college elsewhere) right away.
I guess I have rambled on long enough - I should offer a prize to anyone who actually reads this whole thing! We are striving to discover delight and beauty in every day rather than allow ALS to consume our lives. Some days are better than others...
