I first would like to say that everyone here is very kind and caring and I am thankful there is a place like this to come to and try and understand what we are living in. Sadly though I am not to happy with what my wife and I have found so far since being diagnosed with als.
We went to the doctor and we were given the diagnosis of als. We will be there for you he said, there is all kinds of help and support available. Well I have to say we feel like we are out on a clothesline and there seems to be no one around for that support. The support person that did call depressed my wife so much she had her in tears. My wife could not handle that so we thanked her for calling but said we did not wish to speak with her again at this time. I needed help with some equipment and over the christmas holidays, the society were very kind and they would arrange for me to have a scooter so I could get around easier and not be so fatigued. Well the scooter came and it was filthy, it stopped working inthe street several times. It was a mess. We called were it came from and sent it back. My wife then said we will purchase one, I will not put you through that again. It also was to small for me, but I understood that was a possibility and was truly appreciative of the help but it did not go well.
There does not seem to be on going support with the doctor only when he can fit you in. Basically I was told there was one clinic a month and the sickest patient is seen which is understandable. I will have to wait till I get sicker to be seen. My wife said to him what about support, like how are you today or a friendly hello of encouragement. Does not seem to be there.
We feel alone until coming here I have found this place a place where you do not feel so alone.
It is truly very sad though that they do not seem to make you feel hopeful in anyway. It is like go home and see you when you are sicker. To me this is not right, I feel they should work with the patient and family and give hope positive feelings to help. I also would like to say I do not find this a journey, I would not call it this.
If I sound angry I am not angry I am just saddened that there is very little support for people with this illnesss. My wife and I are looking into maybe writing a book together to hopefully help others.
hope.
We went to the doctor and we were given the diagnosis of als. We will be there for you he said, there is all kinds of help and support available. Well I have to say we feel like we are out on a clothesline and there seems to be no one around for that support. The support person that did call depressed my wife so much she had her in tears. My wife could not handle that so we thanked her for calling but said we did not wish to speak with her again at this time. I needed help with some equipment and over the christmas holidays, the society were very kind and they would arrange for me to have a scooter so I could get around easier and not be so fatigued. Well the scooter came and it was filthy, it stopped working inthe street several times. It was a mess. We called were it came from and sent it back. My wife then said we will purchase one, I will not put you through that again. It also was to small for me, but I understood that was a possibility and was truly appreciative of the help but it did not go well.
There does not seem to be on going support with the doctor only when he can fit you in. Basically I was told there was one clinic a month and the sickest patient is seen which is understandable. I will have to wait till I get sicker to be seen. My wife said to him what about support, like how are you today or a friendly hello of encouragement. Does not seem to be there.
We feel alone until coming here I have found this place a place where you do not feel so alone.
It is truly very sad though that they do not seem to make you feel hopeful in anyway. It is like go home and see you when you are sicker. To me this is not right, I feel they should work with the patient and family and give hope positive feelings to help. I also would like to say I do not find this a journey, I would not call it this.
If I sound angry I am not angry I am just saddened that there is very little support for people with this illnesss. My wife and I are looking into maybe writing a book together to hopefully help others.
hope.