Puppy Chow
Member
- Joined
- Mar 31, 2010
- Messages
- 20
- Reason
- CALS
- Country
- US
- State
- Minnesota
- City
- White Bear Lake
I am new to this site but am looking for assistance.
Here is my story. My husband has been having medical issues for the past 5 years- the doctors started by telling him he just had plantar fascitis but they did 4 surgeries on his legs to fix it as they had to repair tendons, block nerves etc to stop the pain in his legs. At this time he was also tripping on everything. After that he kept having troubles so they said he had Parkinsons disease, then he had restless leg syndrome , then he had nerve issues from problems in his back while he was in the military, then they said he was diabetic then he just had sleep apnea then they told him he was an alcoholic as he has a few drinks a week ( My ex husband was a severe alcoholic so I know what this is ) Now within the past year after having every medical test imaginable and draining my savings account for medical expenses they say he has ALS then the next week he doesn't have ALS. They don't want to actually say these three letters to him as they don't want to give him that death sentence (one of his doctors actually said this).
I have watched him deteriorate very quickly over the past few months. He is 6'2" and used to weigh 280 pounds. He is now down to 218, he has no muscle tone left anywhere but can still walk (don't know how the bird legs hold him up) , he chokes on food alot and sometimes has a hard time swallowing, he has the hiccups alot, doesn't sleep well but can't wear the bipap mask as he is severely claustrophobic, his skin bubbles and it looks like he has worms crawling under it, he stutters and sometimes mumbles but he gets mad at me if I ask him to repeat things.
We are going down to the Mayo clinic per his doctor at the end of April- maybe they will tell him what he has.
Sorry for going on and on but I just am trying to see if what I have told you sounds like he has it. He hasn't been able to work in the past years but keeps trying to get jobs and then his body won't let him do them . He was recently a semi driver and a bus driver. I watched him walk down the hall this morning and by the time I got to work I can't stop crying- he wobbled all the way down and he looks so small. I try to be strong at home and help him and he keeps telling me that we all have to die sometime. I think he is already giving up. I watched my Mom die from Ovarian cancer which was a long process and I helped with her care, recently my Dad died of Lung cancer and I helped with his care.
I want the strength to be able to get him through this but am worried that I won't be able to handle it very well and He already gets frustrated with me if I see him struggling with something and I offer to help. (like opening a package of cheese)
Any help or suggestions of how I can be a good caregiver or does he even sound like he has ALS so I can really prepare my brain better would help. I have been watching this site for months but was afraid to join. Thank you for listening.
Here is my story. My husband has been having medical issues for the past 5 years- the doctors started by telling him he just had plantar fascitis but they did 4 surgeries on his legs to fix it as they had to repair tendons, block nerves etc to stop the pain in his legs. At this time he was also tripping on everything. After that he kept having troubles so they said he had Parkinsons disease, then he had restless leg syndrome , then he had nerve issues from problems in his back while he was in the military, then they said he was diabetic then he just had sleep apnea then they told him he was an alcoholic as he has a few drinks a week ( My ex husband was a severe alcoholic so I know what this is ) Now within the past year after having every medical test imaginable and draining my savings account for medical expenses they say he has ALS then the next week he doesn't have ALS. They don't want to actually say these three letters to him as they don't want to give him that death sentence (one of his doctors actually said this).
I have watched him deteriorate very quickly over the past few months. He is 6'2" and used to weigh 280 pounds. He is now down to 218, he has no muscle tone left anywhere but can still walk (don't know how the bird legs hold him up) , he chokes on food alot and sometimes has a hard time swallowing, he has the hiccups alot, doesn't sleep well but can't wear the bipap mask as he is severely claustrophobic, his skin bubbles and it looks like he has worms crawling under it, he stutters and sometimes mumbles but he gets mad at me if I ask him to repeat things.
We are going down to the Mayo clinic per his doctor at the end of April- maybe they will tell him what he has.
Sorry for going on and on but I just am trying to see if what I have told you sounds like he has it. He hasn't been able to work in the past years but keeps trying to get jobs and then his body won't let him do them . He was recently a semi driver and a bus driver. I watched him walk down the hall this morning and by the time I got to work I can't stop crying- he wobbled all the way down and he looks so small. I try to be strong at home and help him and he keeps telling me that we all have to die sometime. I think he is already giving up. I watched my Mom die from Ovarian cancer which was a long process and I helped with her care, recently my Dad died of Lung cancer and I helped with his care.
I want the strength to be able to get him through this but am worried that I won't be able to handle it very well and He already gets frustrated with me if I see him struggling with something and I offer to help. (like opening a package of cheese)
Any help or suggestions of how I can be a good caregiver or does he even sound like he has ALS so I can really prepare my brain better would help. I have been watching this site for months but was afraid to join. Thank you for listening.
I spent the past six years being mis-diagnosed. Then I went to Mayo in Rochester in September and underwent 12 days of testing to finally leave there with the diagnosed of "Nuero-muscular degenerative disease with ALS characteristics". Then they had me meet with an ALS social worker who put me in touch with an ALS doc in my hometown and an ALS clinic. So am operating under the premise I have ALS even tho Mayo didn't define it as such. (Am I in denial or just translating things too literally?)