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Favretto

Member
Joined
Dec 26, 2012
Messages
14
Reason
Loved one DX
Diagnosis
12/2012
Country
CA
State
Ontario
City
Barrie
Hi all. I've been reading here for a few weeks and I must say there is a lot that I've learned in a short period of time. Thank you all for that.
My mother in law is 63...a year ago she was having issues with her left hand. They did an EMG and she was diagnosed with carpal tunnel and had surgery. The same happened with her right hand and had yet another surgery. A period of time went by and she was fine. Both hands were OK. Early November she begins experiencing weakness in both arms and hands and in her legs. Two weeks ago she has another full body EMG as well as a plethora of blood work and MRI. Her neurologist is 90 percent certain that this is now ALS. She has an appointment end of January with a doctor Shoesmith in London Ontario. We as a family were absolutely devastated. She is having a great deal of problems with certain thing s such as putting on sweaters and walking up stairs. I think its so hard because in October none of this presented itself. She always had hand issues because of working as a nurse most of her adult life. Sorry for rambling. One thing I find bizarre about all of this is some days she tires so fast from walking and yesterday walked our steps at home with ease. This disease baffles me because there seems like no direct course...symptoms seem so random from person to person. I'm just scared. Mostly for my mother in law and father in law. Thanks for your time. And thanks for this site.
 
Favretto, I'm so sorry for your mother-in-law's diagnosis. I've read that many people who had symptoms that resemble carpal tunnel and later turns out not to be. Usually the best thing to start with is finding an ALS clinic where all the doctors she will need are one place. This includes the neurologist, pulmonary, OT and PT, and other services she will need. Fatigue is a big part of this disease.

If she's on the Internet it might help her to come here directly as well. Please feel free to ask any questions, search the forums, there were a lot of members that have passed away that still have great information on their postings. As hard as this disease is, I met some incredible people here, who have taught me how to live with this. I'm also having trouble with my hands these days, and in learning to use Dragon… And I used to type more than 80 words per minute. Good luck and keep us posted!
 
Hello from Ottawa and Welcome.

Sorry for your Mom in law's diagnosis. Indeed, it's a devastating disease, on so many levels. Thankfully, she is surrounded by people who love her; you have come to right place for reliable information, practical advice and exceptional support. I am not aware of London's facilities. Since you're in Barrie, I would have thought she'd be referred to Sunnybrook in Toronto which I understand has an excellent ALS Clinic. I also know that McMaster in Hamilton is great according to other members here. My own experience in Ottawa has been unbelievable- the people are, in a word, GREAT!

I am in same position vis a vis stairs. It's getting tougher (some days near impossible) to get around- so I mete out my trips as best I can. (we are relocating to single storey shortly). Dressing is a bit of a frustrating challenge too! (I am primarily left side affected- hand onset). I do suffer from fatigue- at times it is oppressive and other days less so. I am learning, as will your MIL, to pace myself and save my energy. Each person is very different as is the progression of the disease in every individual. You will find lots of tricks and suggestions to deal with each issue. It's best to think ahead...

You may benefit from viewing a youtube seminar "The ABC'S of ALS"- presented by the Forbes Norris ALS Research Center. My entire family and many friends watched this 3 segment presentation and, like me, found it to be really educational. The Ontario ALS Society is also awesome in terms of support. Your MIL should immediately apply for CPP disability- it takes 4 months to process and is retroactive to application date- not diagnosis date. (my delay in applying cost me 5K) Also, the Disability Federal Tax Credit is worthwhile signing up for ASAP- this credit can be split with her husband and is worth up to 10K/yr and covers a myriad of associated expenses. A handicap parking tag is also useful to have at the ready.

It's normal to be scared- we are all scared, but there is strength in numbers. And remember, there is life after diagnosis. My optimistic husband refers to my/our ALS as a "lifestyle change". And so it is.

Let me know if I can be of assistance along the way. Maybe your MIL can sign up here as well if/when she is ready.

Best of luck to your entire family.
 
My post went to moderation-please stand by.
 
I am assuming that her neurologist and other doctors/councillors will all be at this one hospital which is awesome. I am going to mention this site to her as it seems to be full of information but most of all #Love.
 
I am sorry for your Mother in law's diagnosis. Unfortunately, ALS is a progressive almost always fatal disease. Usually by 36 months from diagnosis the patient dies. I and my dear wife tried everything to stop the tide of this monster disease and nothing and I mean nothing helped. The best thing you can do is to be a loving help to her. and to comfort her in her mental anguish. This disease does not follow a pattern and is different for everyone who has it except it follow a certain pattern sooner or later. Lost of use of limbs, followed by quadraplegia followed by respiratory failure and death. Many people on this site have accused me of being unfeeling when I say this but not one is willing to deny it. Trust in God, ask for patience and understanding and the grace to comfort your mother in law. That is really ALL you can do.
 
Favretto- Please disregard the negativity posted by hangingon- cuz he's not or is barely hangingon.

Statistics schmatistics!

Many many people live long and lead productive lives. If you stay positive, so will your entire family, especially your MIL.

Is the journey easy- Nope! Am I sugar coating it? Nope.
But to focus on the negative aspects is unproductive. I have found enormous strength and new hobbies to boot! So will your MIL.
 
My friend had a cuzin that had ALS for 7 years. I'm sorry bout yer wife haningon. Favretto i hope my firend and yer mil can do some fun things while they can.
 
Yes, please excuse the comments from Hangingon. He is hurting alot and probally is angry as well. Can we really blame him? He lost the love of his life to a horrendous disease. I truly wish him peace and healing.
 
Well said Skipper! Everyone's journey is different ...
 
Hello everyone..
Let me introduce myself.. I am Favretto's wife and it is my Mother who has been diagnosed with ALS.
So far I have just been reading... everything I can get my hands on... and trying desperately to figure out how best to help and support my Mom.

Thank you in advance for all of the information and support.

~T
 
Welcome to both of you. You'll find a wealth of info in our archives and plenty of folks willing to answer questions based on their personal journey with "Lou"
 
Hello Tlee-

I know it's hard and I am sorry about your Mom's diagnosis. You will find a lot of information on this site.

Just curious- why London & not Toronto for your Mom's clinic visits? London is so much further to travel and the trip may get more difficult and tiring for her as time goes on.
 
I believe it was with recommendation from her neurologist. She goes in 10 days which was incredibly fast. We have all done a ton of reading on this disease. The ABCs have been incredibly helpful. Many thanks for that.
 
Happy you benefited from the youtube seminar.

Hope the drive to London in 10 days is smooth and that the weather cooperates. I can tell you from my own experience- our first clinic visit was SUPER tiring, both for me and my husband. It was draining really, physically and emotionally, in spite of the fact that every single person we met was unfailingly supportive and caring. Luckily, we are a 10 minute drive away.

You may want to stay overnight and make it a bit of a holiday for your MIL.




I believe it was with recommendation from her neurologist. She goes in 10 days which was incredibly fast. We have all done a ton of reading on this disease. The ABCs have been incredibly helpful. Many thanks for that.
 
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