ko17
Member
- Joined
- Aug 23, 2010
- Messages
- 13
- Reason
- CALS
- Diagnosis
- 01/2009
- Country
- US
- State
- OH
- City
- Cincinnati
Hello, this is my first post on here, I have been looking through some past threads and already feel better knowing there is so much support and info out there. Everyone here is so supportive and you can really feel the love coming from people who have been through or are going through this themselves.
My dad was diagnosed Jan 09, it started in his hands, moved through his arms, into his neck and shoulder muscles and has slowly moved elsewhere.
He has no movement in his arms or hands at all, can still talk some although it is changing and becoming slurred, and can walk a short distance to the rest room, but is extremely out of breathe when he sits back in his chair. The smallest tasks make him so out of breathe that he has terrible anxiety. I cannot imagine what it would feel like to be constantly short of breathe, and being scared all the time that he eventually will not be able to "catch it". His breathing is is becoming much more difficult and we have the bi pap machine but he cannot wear the mask comfortably because he says it makes him feel claustorphobic and gives him more anxiety.
This anxiety is fairly new, started around June of 10, and is making his quality of life decrease tremendously. It is so hard to watch my dad go through this, and is hard to deal with the overwhelming amounts of thoughts that race through my mind every minute of every day.
He recently had the PEG tube put in place and has responded well (stomach accepts it through use of Boulis system) to the almost six cans of ensure he recieves each day.
I am trying to finish up school, I have one quarter of school away from home left, and am having some anxiety myself about leaving again this fall. I go to school 2 1/2 hours away and cannot stop thinking about how I will be able to be away from my dad. I have been such an integral part of his everyday, and he relies on me to help " calm and comfort him" when my mom becomes frustrated and needs "time away".
I would like to have some sort of timeline, but from what I have gathered on these boards is that each person is different, and it is hard to give predictions. Even still, I would like to hear some sort of ball park, or at least know some of the tell tale signs, so that when/ if I have to decide to leave school and my job there, my family and I will know what to look for, and decide when its time.
He is suffering from terrible itching, I read some of the itching threads and plan on discussing neurontin with my mom tonight. We constantly are brushing his hair, scratching his back, legs, arms, etc. and it becomes very taxing on both my mom and I (almost equally taxing is the guilt felt by wanting to refuse to scratch him).
We have a home health care person who helps in the mornings while my mom and I work, and have great "social" support from church members, and friends of his, but the burden of all things non social related falls on my mom, sister and I.
Hospice is going to start coming shortly, though I am not 100% sure what they will be doing at our house. Does this mean the end is in sight? The thought of him not being here within the next couple of months seems way too soon, but he also seems ready, as he is miserable most of the days. This stuff is so scary, and im certain it will get worse than it already is.
I know this is long, and I am a newbie, but I wanted to share my experiences and seek some advice/support, or a semi timeline if anyone has experienced similar things with ALS. Thank you
-Kyle
My dad was diagnosed Jan 09, it started in his hands, moved through his arms, into his neck and shoulder muscles and has slowly moved elsewhere.
He has no movement in his arms or hands at all, can still talk some although it is changing and becoming slurred, and can walk a short distance to the rest room, but is extremely out of breathe when he sits back in his chair. The smallest tasks make him so out of breathe that he has terrible anxiety. I cannot imagine what it would feel like to be constantly short of breathe, and being scared all the time that he eventually will not be able to "catch it". His breathing is is becoming much more difficult and we have the bi pap machine but he cannot wear the mask comfortably because he says it makes him feel claustorphobic and gives him more anxiety.
This anxiety is fairly new, started around June of 10, and is making his quality of life decrease tremendously. It is so hard to watch my dad go through this, and is hard to deal with the overwhelming amounts of thoughts that race through my mind every minute of every day.
He recently had the PEG tube put in place and has responded well (stomach accepts it through use of Boulis system) to the almost six cans of ensure he recieves each day.
I am trying to finish up school, I have one quarter of school away from home left, and am having some anxiety myself about leaving again this fall. I go to school 2 1/2 hours away and cannot stop thinking about how I will be able to be away from my dad. I have been such an integral part of his everyday, and he relies on me to help " calm and comfort him" when my mom becomes frustrated and needs "time away".
I would like to have some sort of timeline, but from what I have gathered on these boards is that each person is different, and it is hard to give predictions. Even still, I would like to hear some sort of ball park, or at least know some of the tell tale signs, so that when/ if I have to decide to leave school and my job there, my family and I will know what to look for, and decide when its time.
He is suffering from terrible itching, I read some of the itching threads and plan on discussing neurontin with my mom tonight. We constantly are brushing his hair, scratching his back, legs, arms, etc. and it becomes very taxing on both my mom and I (almost equally taxing is the guilt felt by wanting to refuse to scratch him).
We have a home health care person who helps in the mornings while my mom and I work, and have great "social" support from church members, and friends of his, but the burden of all things non social related falls on my mom, sister and I.
Hospice is going to start coming shortly, though I am not 100% sure what they will be doing at our house. Does this mean the end is in sight? The thought of him not being here within the next couple of months seems way too soon, but he also seems ready, as he is miserable most of the days. This stuff is so scary, and im certain it will get worse than it already is.
I know this is long, and I am a newbie, but I wanted to share my experiences and seek some advice/support, or a semi timeline if anyone has experienced similar things with ALS. Thank you
-Kyle