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carriexray

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So gang, my sister's dear friend and our "adopted sister" was diagnosed with ALS yesturday, seems a neurologist finally had to guts to tell her. She has been going back and forth for over a year and finally got the diagnosis.
Do I sit back and wait, do I provide her with as much info as I can?
I am a healthcare professional and the family tends to ask me what's up.
So I guess I just want to know how to be the best support to my sister and our friend.
 

Al

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Hi Carrie. Sorry about your friend. It does sometimes take more than a year for a diagnosis mostly because there is no actual *test* for ALS. The first thing you should do for her is tell her to call the ALS Society of Ontario and register with them. They have a very good free manual called A Manual for People Living with ALS. In it you will find answers to most of the questions she will have.
For the others she could get a referral to the Clinic at Sunnybrook. They are very helpful there.
Just letting them know that you care for and love them is about the most you can do for support. Let them know that you are there to talk to. A lot of friends won't want to talk about it.
And there is always the forum here. We have a good gang of people with a lot of heart. Tell her to feel free to jump in anytime for advice or to just vent. Someone will be able to help or know where to send her . Take care
 

carriexray

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Thankyou so much, she is going to the clinic at Sunnybrook, they said it may take till July to get in. As an xray tech I know that isn't really that long, but it sure seems like it when you are dealing with someone you love.
I will tell her to get in touch with the als chapter in ontario, thanks. And listening is a skill I possess so thanks. : :arrow: :roll:
 

Granny

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Hi Carrie,
I have been reading the posts on the forum for some months now but never resgistered or replied. Today when I read your post, I decided I needed to answer. By the time I did, Al had already answered you with most of what I would say. The ALS society and an ALS clinic are a great help. And, as Al says, just be there for her with lots of love (and hugs). I was diagnosed in April, 2004 and I found that I could not take all the information in at once. I had known several people with ALS, so it was not completely new to me, but I did not want to hear some things until later on. It is a gradual getting used to the situation, but we learn to cope with the help of God, family, friends and a good medical team.
Since it is my first post, I should say that I have bulbar type ALS and still have full use of my arms and legs. I have a feeding tube which I use for about half my nutrition, and eat the rest, mostly pureed.
This forum is great. I have enjoyed Al and the Mikes and been touched by Carol and her courage and continued support. Thanks for being there.
 

Carol Deboer

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Hi Carrie and Granny,

Welcome, welcome, welcome ! Sorry to hear about your friend Carrie. She is lucky to have someone like you to help answer all her questions and concerns. Your support now is what she needs. I know that bombarding her with all the details of this als thing right away will seem overwhelming, so take baby steps with her. You will find out many things as you go. We did. The als society of Ontario is a great support as well as your local CCAC . They will be of tremendous help. Granny, sorry to hear about your diagnosed. It really is a blow to all concerned. Your family and friends hopefully will surround you with much love and understanding. There is life with als. Again, you will find humour and laughs, and tears in all the modiifcations to come, but you will all do okay. There are many scary moments to come, but remember you are not alone. Some of us have lived it and we are here to help. Please let us know if there is anything we can do, or if there are any specific questions that you would like answered. Sometimes coming from one who has been there done that is comforting. Yes, your lives will be chanaged forever, but, you have to remember you are not alone. I promise you that we all will be here for both of you. Please join us often for laughs, tears, hugs, love, support, and caring. Remember, Stay Strong......

Love, Carol
 

TBear

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Hi Carrie... and Granny:

Like Carol, I am the surviving spouse of an ALS victim... and a member of the lunatic fringe of this form. The diagnosis is a big thing to swallow at once... I found that a lot of wine helped out in the early stages... and the later stages too!
There is a link to the ALS Society of Canada on this page that will take you to the "manuals" section. From there you can have access to the People Living with ALS manual as well as the caregivers manual on line. I think that Dr. Strong from London has recently updated these manuals.
I hope that your other sister gets to Sunnybrooke soon Carrie... they are a great bunch there! Maybe we'll see you at the "Walk" in Toronto in June

Cheers

T.
 

Al

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Joined
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Messages
7,960
Reason
PALS
Diagnosis
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Country
CA
State
On
City
NW of Toronto
Hey TBear. Are you coming to the Peel Walk June 11 at Erindale Park Registration 9am Walk 10am. Prizes Hot dogs and other freebies?
Shameless free advertising I know.
 

carriexray

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May 18, 2005
Messages
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Thankyou all for your support, my sister Janny went over and shared a bottle fo wine with Jillybean. Hugs and tears but ok. She went upstairs in her condo cause a neighbor has ALS and had a nice chat. This woman has a slow progressing kind and is only in need of a walker, so I think that boosted Jill. What a great community.
I was teasing my sister that if Jill got a scooter she could take out people on the sidewalks :twisted:
All her "adopted" sisters have stepped up to the plate and I guess we have realized that we are in her life for a reason.
And of course I laughed at Janny when she said I guess now she will quite smoking, I said she'll do whatever the heck she wants as she always has. Don't expect some epiphinal moment. :D
 

me

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Still kinda catching up here....Welcome Carrie and Granny. New people are always welcome here and we hope you'll stick around if you need the support or have some to offer. Granny, it's good to hear from one of our silent readers. Hopefully you will be an encouragement to others to post. Melissa
 

Timshelper

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Nov 11, 2003
Messages
154
Carol,
I went over to Tims today and asked him if he had requested his wheelchair and of course he forgot so while the home care worker was their I asked her . She seemed a little dumfounded and asked me what was wrong with the one that he had and I said it was from the hospital and it was too small and he needs a custom fit. When I say custom fit what exactly am I asking for I know that may sound dumb but she was of no help. She did get on the phone and talked to her supervisor but if he just gets another regualr wheelchair but bigger is this what we are talking about. She also showed me how to feed the feeding tube today and Tim seems very satisified with it.He is definitly getting weaker but feels fuller and is still smiling but gets agitated very easy. Should I be talking to the ALS society here in Regina about the cost of the chair if it needs special requirements? I am so green about this and so are the people here they just dont know what they are dealing with because they dont have to deal with ALS patients.It sounded like Henry's chair was quite the vehicle. Oh and by the way I got my interview with the pharmacey for Tuesday at 9:30 am thanks to you and Melissa for your magic now the rest is up to me. Love ya!
Kim
ALs About Loving Someone
 

me

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Messages
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Congratulations Kim! Good luck with the chair. Melissa
 

TBear

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Messages
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Country
CA
State
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Uxpatch
Hi Kim:
The local ALS clinic should be helping to get a proper wheelchair. We got ours through insurance and the OT set it up. If Tim doesn't have supplementary insurance, then the ALS Society should have access to one that isn't being used. I donated the one that we had back to ALS Ontario for just that reason.
Good Luck

T.
 
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