Finding Faith and the road ahead...

[Lily]

I am reluctantly a new member here. My dear mother, age 57, was diagnosed with ALS a few weeks ago and I was shocked at how casually the doctor mentioned it without any type of emotional preparation. Since then, we took a family vacation to Cuba and are waiting for our second specialist appointment at Sunnybrook.

It is very overwhelming to be online. There is so much information and much of it is contradictory.

My mother's neurologist said she had "mild als"...what does that mean?

So here are some of the things I would appreciate some advice on:
1. How credible is "Eric is Winning?" My mother has drawn a considerable amount of hope from reading his writings and is about to embark on getting hair analysis and cleaning her colon. She is drinking alkaline water (which she says has increased her energy) and started eating organic vegetables. Have any of you taken this route?
2. She has had symptoms of weakness in her right waist and right leg which challenge her in walking, especially stair climbing. However, she has not regressed significantly for the past year. Should we be in a rush to start the Rilutek or wait to see if things start to worsen?
3. What type of physical therapies will help her maintain her mobility (she is currently using a cane).
4. How does one balance optimism for a cure and preparing for an unknown reality?
5. I have watched my mom choke with horror twice and don't know how to help her when she is wheezing. What should bystanders do in this situation?
6. Are there any alternative doctors in the Toronto area familiar with dealing with ALS?

From what I gather, each person must personally design their own cocktail of western, spiritual and alternative healing practices to walk this journey of faith.

I do believe that love makes a huge difference and the bonding and praying my family has done together has certainly strengthened us a great deal during this time.

I see there is a lot of love and faith in this forum and I am so grateful for all of the courage and encouragement I have found amidst its pages.

Thank you,
Lily

 

[wewillbeatthis]

Lily,

I am so sorry that you too have had to hear this news about a loved one. I also have had to hear the news that my dad has this terrible disease. I can tell you that two weeks ago I had no clue how I was going to do this... Never mind me how my dad was going to get through this... My situation is a bit different cause my parents are divorced. Dad lives alone and this scares me cause I don't get to see him everyday. Although I do speak with him at least five times a day Dad does not use the computer so he will ask me to ask things and I just ask what is on my mind and give him the feed back. It has made such a difference in his out look to know that others have this. Actually it seems that the worse so this has been others reactions when they find out what he has. To him it is another day and he is going to be fine

I can tell you that it is best to get a second and even a third opinion due to how diff. it is to diag. this diease.

As for Rilutek it has sife effects just as any other form of medication does. Several people take it and have no side effects from it. It will not hurt your mom in the from of ALS nor will it make it go faster. However, there is also no guarntee that it will help her either. I have read and the doctors have told us certain vitamins are good to take and these are things you will find people taking on this board of course run it by the doc. first.

PT is something that your mom should do it will help keep her muscles that have not been damaged strong, and as for those that have she should learn straching exercises.

The diet you are speaking of is not something I know about sorry.

I can tell you that you should ask all of your questions here as you have and feel comfortable that you will get great advise. After all the doctors may have the knowlege on the disease but these are the people living it.

I promise to write more later. I now must go..

Jen

 

[TBear]

Hi Lily:

... from Brampton? You'll have lots of support there. I suggest that you go to the ALS Society of Canada web site first (top of this page on the left side) and download the "Manual for People Living with ALS". It will be a good starting point. Many of your questions can be answered there. Your mom will also get a good start at Sunnybrook so you can ask a lot of questions of the neurologists there who work specifically with ALS patients and , since every patient progresses at differing paces, will be able to more assess what to do next. Myrna (clinic coordinator) is absolutely phenominal and a great source and can help guide you. Try to establish contact, through her family Dr., with Community Access to Care for help at home.
Jen has given you a good synopsis of the specifics you've asked about. Ask away anytime should you have other questions... there's usually somebody online who can help answer them.

CHeers

T.

 

[Al]

Hi Lily. Do you know when your mom is going to the Clinic at Sunnybrook? Tuesday is usually ALS day there. I have an appointment at 10:30 on Sept. 6.. There may be people from ALS Ont. there that day. They usually try to attend to meet the new people and make sure you are aware of the services they offer. So sorry about your mom but she will be in good hands there.

 

[Al]

Hi Lily again. If you or your mom or any other family members would like to participate in the Brampton Support Group send me a Personal Message and I'll give you our phone number. She might not be ready for it yet but we usually meet once a month in the evening mostly to chat and lend an ear and a shoulder if needed. We are an informal group as you may have gathered from some of the others from Brampton that post here.