Saddened By Lack Of Support.

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hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
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.
 

me

Distinguished member
Joined
Apr 26, 2004
Messages
216
Hope - This seems to be an ongoing problem for many people. I'm sure many from this group will have suggestions for you but in the mean time, I'm glad you found this group for support. It really does give the support you need. STay with us!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I am so sorry that you feel abandoned. Can I ask where you are from? I find it hard to believe that you have been treated so poorly. I have had the utmost help from the Society. I am presently breaking in a new Hospice case manager a new OT and Physio therapist. The people in my last town were good but these new people are great. We recently moved about 40km away from where we were. They are kind and helpful and while they have not had much experience with ALS they are willing to learn. They have asked to borrow the films and DVD's that I have relating to ALS. Problem is that I can't remember who borrowed them last. Who says the mind doesn't go with ALS? Oh Yea we are all different.
I'm not trying to make light of your situation but I do understand. Is there no support group in your area made up of ALS patients? With the help of the ALS Society we started our own. They had a town hall meeting to get a bunch together and we took it from there ourselves.
We meet usually once a month and just talk about the things we need to talk about. We are most or our Walk Committee as well and we are in the process of organizing a St. Patrick's Day Dance with the local Legion. Was your support person that called from CCAC or the Society or Hospice? The Hospice here has a mentoring program. They came and talked to me about my interests and then had a volunteer mentor call me up. The program is loosely structured and Charlie and I are free to do what ever we like. He is a new friend, someone to talk to, someone to go for coffee with and give my wife a bit of time off if she wants. There are programs out there. A few phone calls are all it might take. There must be others in your area feeling the same. Ask around and try to get them together. Start your own support group. I hope I have given you some ideas where to look for support. I know it is out there. Good Luck.
 
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