Handmaiden
Member
- Joined
- Dec 9, 2010
- Messages
- 19
- Reason
- Loved one DX
- Diagnosis
- 01/2011
- Country
- Uni
- State
- TX
- City
- Dallas Fort Worth
Hi friends,
I know it has been awhile since posting. So much has happened since my brother first received his diagnosis. We went for a second opinion - same diagnosis was given. The second doctor actually told my brother.....What you are dealing with is very serious - if there is anything you want to do, anywhere you want to go - you should do those things now. We have also gone to have a pulmonary function test done - respiration was normal - but doctor ordered a sleep study in order to get him on a CPAP. Then, my brother wanted to attend the ALS Support Group meeting, which is held the first Thursday of each month.
The lady who facilitates it I found to be rather annoying. To say this was a "support group" and have the facilitator as well as others - say to my brother - your going to need a wheelchair, things just get worse from here on out - etc, etc. was shocking to me. This was his first visit for crying out loud! It felt like all the "so called support facilitators" were more like angels of death come to tell him how bad his life was going to get! Geeez - seriously! Baby steps please.
The facilitator also said she wanted to do a home visit - to walk my brother through everything. He agreed he did not want her in his home at all. She kept referring to the members as "her patients" yet she is not a doctor - yet likes to view herself as one.
Right now - I am so disappointed with the ALS Support Group forum that we are not sure what to do - he needs support but NOT what we experienced.
Is there anywhere else to turn? I have also noticed he is coughing a lot more and has cramping in his neck and hands, facsiculations, and drooling. He is also experiencing depression - but is putting on a brave face for all of us.
Need some real support, or real hope.
I know it has been awhile since posting. So much has happened since my brother first received his diagnosis. We went for a second opinion - same diagnosis was given. The second doctor actually told my brother.....What you are dealing with is very serious - if there is anything you want to do, anywhere you want to go - you should do those things now. We have also gone to have a pulmonary function test done - respiration was normal - but doctor ordered a sleep study in order to get him on a CPAP. Then, my brother wanted to attend the ALS Support Group meeting, which is held the first Thursday of each month.
The lady who facilitates it I found to be rather annoying. To say this was a "support group" and have the facilitator as well as others - say to my brother - your going to need a wheelchair, things just get worse from here on out - etc, etc. was shocking to me. This was his first visit for crying out loud! It felt like all the "so called support facilitators" were more like angels of death come to tell him how bad his life was going to get! Geeez - seriously! Baby steps please.
The facilitator also said she wanted to do a home visit - to walk my brother through everything. He agreed he did not want her in his home at all. She kept referring to the members as "her patients" yet she is not a doctor - yet likes to view herself as one.
Right now - I am so disappointed with the ALS Support Group forum that we are not sure what to do - he needs support but NOT what we experienced.
Is there anywhere else to turn? I have also noticed he is coughing a lot more and has cramping in his neck and hands, facsiculations, and drooling. He is also experiencing depression - but is putting on a brave face for all of us.
Need some real support, or real hope.