KissJ
Distinguished member
- Joined
- Jul 6, 2011
- Messages
- 380
- Reason
- Loved one DX
- Diagnosis
- 05/2011
- Country
- US
- State
- Pennsylvania
- City
- Greensburg
Re: introducing myself
Hi Jack,
I'll introduce myself too. Something I haven't done. Good idea! My husband was diagnosed in May then again in June through a second opinion meeting in the ALS/MD Clinic in Pittsburgh, PA.
We have been devastated!
What helped us to this point is anti-depressants!
Then, I agree with others here...Contact the ALS Association! We have a social worker that is the most amazing, compassionate person. Before getting in contact with them, I was in a total panic wondering how I was going to handle everything by myself. But, you aren't alone, they are there 100% to help you with this beast!
Take a vacation. If you can! Even a get away weekend I am sure would help. We went away for a week. The ALS Association helped to get us a transport wheelchair. My husband John is walking with a cane, but gets tired easily, looses his balance, and the cane just hurts his hand after using it a while. I asked about it, and in the blink of an eye it was there at our doorstep!
Getting away helped so much. We were busy driving, planning, exploring, eating, and turned into little kids again with our minds busy having fun!
Now we are back and it is easier to deal with somehow. Of course the anti-depressants are totally kicked in! There is somehow a sence of acceptance and knowing that we are going to fight this as much as possible, cherish each day we have, and not ruin today in worry about tomorrow!
Church was difficult at first. All I wanted to do was cry and beg God. Now, I use the time to pray, ask for strength, and look to God for guidance! I visualize and ask for a miracle in what ever form God sees for my husband! Misdiagnosis, Remission... Plateau, PLS...Not ALS!, a long First Stage, Stop in Progression, .......
I have my own set of neurlogical problems and issues that I won't get into because this is about my husband and not me! But, I have experienced miracles through my issues, and know they are possible.
I suggest reading, "Love, Medicine, and Miracles" by Dr. Bernie Siegel.
When we went to see the doc in Pittsburgh I asked him about possible causes of ALS. We discussed the connection to the military. My husband is a Vet! Then, possible theories... He mentioned that more often now he sees ALS showing up with people in the same neighborhoods. He feels it is environmental.
I don't know if it is because we are now involved with ALS, but it is amazing how many friends tell me stories about their mother, their friend, father, etc... And, one friend told me she has two cousins that have it. Wow. I agree! Rare...?
God Bless You!
Hi Jack,
I'll introduce myself too. Something I haven't done. Good idea! My husband was diagnosed in May then again in June through a second opinion meeting in the ALS/MD Clinic in Pittsburgh, PA.
We have been devastated!
What helped us to this point is anti-depressants!
Then, I agree with others here...Contact the ALS Association! We have a social worker that is the most amazing, compassionate person. Before getting in contact with them, I was in a total panic wondering how I was going to handle everything by myself. But, you aren't alone, they are there 100% to help you with this beast!
Take a vacation. If you can! Even a get away weekend I am sure would help. We went away for a week. The ALS Association helped to get us a transport wheelchair. My husband John is walking with a cane, but gets tired easily, looses his balance, and the cane just hurts his hand after using it a while. I asked about it, and in the blink of an eye it was there at our doorstep!
Getting away helped so much. We were busy driving, planning, exploring, eating, and turned into little kids again with our minds busy having fun!
Now we are back and it is easier to deal with somehow. Of course the anti-depressants are totally kicked in! There is somehow a sence of acceptance and knowing that we are going to fight this as much as possible, cherish each day we have, and not ruin today in worry about tomorrow!
Church was difficult at first. All I wanted to do was cry and beg God. Now, I use the time to pray, ask for strength, and look to God for guidance! I visualize and ask for a miracle in what ever form God sees for my husband! Misdiagnosis, Remission... Plateau, PLS...Not ALS!, a long First Stage, Stop in Progression, .......
I have my own set of neurlogical problems and issues that I won't get into because this is about my husband and not me! But, I have experienced miracles through my issues, and know they are possible.
I suggest reading, "Love, Medicine, and Miracles" by Dr. Bernie Siegel.
When we went to see the doc in Pittsburgh I asked him about possible causes of ALS. We discussed the connection to the military. My husband is a Vet! Then, possible theories... He mentioned that more often now he sees ALS showing up with people in the same neighborhoods. He feels it is environmental.
I don't know if it is because we are now involved with ALS, but it is amazing how many friends tell me stories about their mother, their friend, father, etc... And, one friend told me she has two cousins that have it. Wow. I agree! Rare...?
God Bless You!
