MarthaNell
New member
- Joined
- Sep 23, 2015
- Messages
- 2
- Reason
- CALS
- Country
- US
- State
- Texas
- City
- Fort Worth
Hi all,
My husband John and I are currently laying in a hospital bed at NIH!
Our journey started 4 1/2 years ago in the spring/summer of 2011. John grew up on a ranch in West Texas and worked as a geologist in the Oil Fields. He played baseball, football, and wrestled growing up. In 2011 he noticed his feet felt heavy and uncoordinated. He began to fall. His balance was very wobbly. In the winter he had to use crutches (he wouldn't use the cane I had). He fell facedown on the street downtown crossing for work. He felt weak. He gave in and used a cane. Over the next year his legs felt weaker but he did not lose muscle. He can regain muscle and is still strong. He felt his arms being effected. We saw our therapist at first thinking it was the stress of getting married and having our daughter. It clearly wasn't. We then saw specialist at UTSW in Dallas. They weren't exactly sure either. We had blood work, MRI's, CT Scans, PET scans, everything under the sun done. John also suffers from an immune deficiency he has had since childhood. They thought the Neuro symptoms could be related. We went to Mayo. We stayed for 9 days and loved it. The neurologist Dr. Pittock wasn't 100% positive what it was. They did al the normal scans, LP's sweat tests, EMG, & nerve conduction study. Everything looked relatively normal. One doctor at Mayo thought it could be PLS but it was to early to tell. We went to NIH twice.
Things progresses over the next 4 years. John's arms and hands are effected. In the last year he has lost his voice. He can say a few words but it is very hard for strangers to understand him. During this time we had our 2nd daughter. We planned her b/c I couldn't imagine leaving the first one an only child. I feel like they will need the support of a sibling.
John has some trouble swallowing but no diet changes yet. He just chews slow and takes small bites. I reached out to Mayo and NIH a few months ago b/c I wanted to try to get seen again. Over the last 4 years we have tried chemo, IVIG, Apheresus, plasmapheresis, many other things with no luck.
We are impatient at NIH for a week. The EMG was today. She thinks PLS. My heart broke. It seems like even though you look for answers for years, you really don't want to hear them. We are thankful it is not ALS. But we are sad because we know there is no magic pill or cure. My heart breaks for my husband. He uses a walker full time now and a scooter for long distances. He has a Lingraphic speech devise that he uses. It has eye gaze if we need that in the future. He mostly types on his phone. The speech issue bothers him the most. He hated not being able to communicate fast and effective with ppl. He is on disability and does PT twice a week, speech twice, & OT once.
I'm not happy to meet you all under these circumstances but I am glad you all will understand the tough road ahead!
My husband John and I are currently laying in a hospital bed at NIH!
Our journey started 4 1/2 years ago in the spring/summer of 2011. John grew up on a ranch in West Texas and worked as a geologist in the Oil Fields. He played baseball, football, and wrestled growing up. In 2011 he noticed his feet felt heavy and uncoordinated. He began to fall. His balance was very wobbly. In the winter he had to use crutches (he wouldn't use the cane I had). He fell facedown on the street downtown crossing for work. He felt weak. He gave in and used a cane. Over the next year his legs felt weaker but he did not lose muscle. He can regain muscle and is still strong. He felt his arms being effected. We saw our therapist at first thinking it was the stress of getting married and having our daughter. It clearly wasn't. We then saw specialist at UTSW in Dallas. They weren't exactly sure either. We had blood work, MRI's, CT Scans, PET scans, everything under the sun done. John also suffers from an immune deficiency he has had since childhood. They thought the Neuro symptoms could be related. We went to Mayo. We stayed for 9 days and loved it. The neurologist Dr. Pittock wasn't 100% positive what it was. They did al the normal scans, LP's sweat tests, EMG, & nerve conduction study. Everything looked relatively normal. One doctor at Mayo thought it could be PLS but it was to early to tell. We went to NIH twice.
Things progresses over the next 4 years. John's arms and hands are effected. In the last year he has lost his voice. He can say a few words but it is very hard for strangers to understand him. During this time we had our 2nd daughter. We planned her b/c I couldn't imagine leaving the first one an only child. I feel like they will need the support of a sibling.
John has some trouble swallowing but no diet changes yet. He just chews slow and takes small bites. I reached out to Mayo and NIH a few months ago b/c I wanted to try to get seen again. Over the last 4 years we have tried chemo, IVIG, Apheresus, plasmapheresis, many other things with no luck.
We are impatient at NIH for a week. The EMG was today. She thinks PLS. My heart broke. It seems like even though you look for answers for years, you really don't want to hear them. We are thankful it is not ALS. But we are sad because we know there is no magic pill or cure. My heart breaks for my husband. He uses a walker full time now and a scooter for long distances. He has a Lingraphic speech devise that he uses. It has eye gaze if we need that in the future. He mostly types on his phone. The speech issue bothers him the most. He hated not being able to communicate fast and effective with ppl. He is on disability and does PT twice a week, speech twice, & OT once.
I'm not happy to meet you all under these circumstances but I am glad you all will understand the tough road ahead!