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Gotty

Active member
Joined
Nov 24, 2015
Messages
33
Reason
PALS
Diagnosis
11/2015
Country
CA
State
ON - Ontario
City
Toronto
Hello everyone,

About 6 months ago I came upon this site and was blown away by the outpouring of warmth, friendliness, support and wealth of information. You are all wonderful, sharing your stories and experiences for scared 'kids' like me! Thanks to the founders and contributors for this great space!

I thought someday I might be back and here I am. Newly and finally diagnosed today. It took a bit over 3 years, starting with spasticity in my left leg. I am still mobile, using a 'walker', and glad to have the balance after a wobbly use of a cane and many falls for the last year.

Anyway, here I am and wondering so many things...

Top of mind is how my family will cope. Luckly (or sadly) I don't have children, though my dogs are a close second. I have a partner and a few sibs all of whom are close. While I have been planting seeds to this direction, my sibs are non accepting and keep 'googling' to find and offer-up other things I may have. My partner doesn't think anything needs to change and won't think of short/long term realities. Any ideas on how to make my sibs stop and my partner wakeup?

My second top of mind is my job. I am the primary earner and we have debt. Quite affraid and ignorant on how to manage this one. I am still working but with a 2-hour daily commute in stop-and-go traffic, I am finding it quite exhausting. Especially using a clutch! Does anyone actually disclose ALS to their employer, or do you just keep going until you can't anymore. (Just thinking you should have a limit to characters, as it seems I am going on and on...)

Anyway, it's nice to meet you all and thanks for listening.
Gotty
 
Welcome, Gotty. No character limit--post as you please. I know everybody here is looking forward to reading your story, sharing their own, and answering your questions. Here's my humble input.

We had our doctor write a letter of diagnosis which we used to ensure there could be no doubters. It would be best if your partner and sibs came on board the reality train ASAP. Could it be as simple as sending each one a copy of your diagnosis?

Personally I don't recommend informing your employer. My personal feeling is that your employment might end sooner than you like if your employer finds you have a terminal illness.

If you haven't already, you will want to set up your legal papers such as an Advanced Directive.
 
Sorry to hear you have joined us.
Re employment, there are a number of variables.
Does your employer value you? Is there productive work you could do closer to or at home?
Do you have either a short or long-term disability policy?
Is there unpaid family leave in Canada as here? If so, are you eligible given whatever the size/nature of your company? (Here, small ones are exempt.)

Agree w/ letter and all legal paperwork, but don't make your health care proxy someone who doesn't believe in ALS yet. If you had a crisis tomorrow, that would not turn out well. Find someone who will believe, whom you trust, and be frank.
 
Hi Gotty, Sorry to meet you here. I had a long trip to get here too. I was fairly open with my employer as far as keeping them informed as to how things were going. EI will cover you for 16 weeks of disability leave. From there long term disability takes over if you have it. If not ODSP pays better than CPP and has drug benefits that CPP doesn't provide. ALS drugs are expensive as is any of the equipment you will need. I can't say enough about the ALS Society and the help they provide. The clinic at Sunnybrook is another good resource. As far as your family and partner go, everyone copes in their own way, on their own schedule. Nothing you can do about it other than keeping communication as open as possible. Finally with work, DO NOT go from work to a wheelchair. I left work when the fatigue made it so I could stay awake at work and slept from getting home till the next morning. Didn't leave much time for me or my family, you don't want to be on your death bed saying I could have spent more time at the office.
Vincent
 
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Hey Gotty
Sorry that you find yourself here, we welcome you with open arms however.

Have you enough strength to bash your siblings heads together? That was a joke...but seriously?
I guess I'm fortunate that my brothers were with me from the start, as was my husband, although he prefers not to discuss nitty gritty with me. I have PLS.
Anyway I think you should give it to them straight. They are family. Being close to you it will be easier to deal with down the track if they are on the 'reality train' now. Oh good lord, no pun intended!

All the best with it. Keep us informed with progress there, so many of these gorgeous people here will have awesome advice on how to deal with that issue.

God bless, Janelle x
 
Thank you all for taking the time to welcome me and for your advice. So very much appreciated! I especially love that throughout it all, there is a sense of humour maintained.

Vincent, Sunnybrook is where the final diagnosis came from so I am in great hands! Will look into ODSP too and though I am a workoholic, have begun to visualize life without work.
Green Queen, LOL and yes may have to resort to that one day... will let them cope on their own and try not to let it bother me.
Atsugi and Lgelb, I can't thank you enough for taking the time to answer back. Appreciate your thoughts and will think heavily about the employer situation, and do my research before I formally 'come out' (if I do).

Are their chat forums on 'timing'? My dr was quite optimistic to not believe on a span of years, yet the ALS Canada fact sheet clearly states a most probably timeline. My partner now thinks that with regular exercise, my ALS will be prolonged and gives him another reason to be 'positive' rather than dwelling on the not so positive facts.

Thanks again for being there.

All the best,
Gotty
 
There is no timeline. We are all different. That said a long time to diagnosis is generally a good sign which makes sense if you consider a quick trip to diagnosis from symptom onset is more likely to be fast moving ALS. Progression for most of us is not linear and many of us have plateaus. I personally know a man with ALS who is living 20 plus years no feeding tube or respiratory support. I know someone on FB who is at 8.5 years only affected in one leg. They are outliers but not unique. Plan for the worst but hope for the best.

Exercise- oh my! The old theory was exercise beyond range of motion is bad. Now more and more the experts are saying light to moderate exercise is probably beneficial. Do not exhaust yourself. My clinic says if it takes longer than an hour to return to baseline you did too much. In my opinion resistance work that stresses and breaks down muscle is dangerous. The muscle can not rebuild. Water exercise is good for many and worth a try if you have access I was not able to find a pool warm enough. Unless it is practically a hot tub my muscle tighten up but most people seem to make it work.
I echo the thoughts about work. If it is stressing you emotionally or physically consider leaving for quality of life and very possibly a little longevity benefit too. Stress and overexertion are bad!
 
Sorry to be welcoming you but here you will find an amazing amount of support and help.

Accepting this illness is tough. Pals struggle to accept it and they feel and live with the changes everyday. Family members, especially those that don't see you often, can live in denial for a long time. There will come a point when you physically have changed enough that they will no longer be able to deny you are sick. We are 19 months post diagnosis and some family still doesn't believe anything is wrong with my husband. They all take their own path.

About exercise....my hubby's physical therapist at clinic recommended it. I asked what is the point of this because I didn't understand . She said maintain any strength , especially in the legs if your walking, greatly helps with balance and to prevent falls. She said they believe some exercise helps keep the nerve longer but couldn't offer proof. I don't know, if she is involved in a study or something but I found that quite provacative
 
Incredibly interesting article Nikki!

I think the essence of it was very well balanced - MODERATE AEROBIC exercise.

The thing that would worry me is resistance and pushing yourself. Like when one physio told Chris she was going to have him start doing pushups (because his shoulders, arms and hands were visibly wasting and weak). He managed to push himself up once, then face planted and was smart enough to tell her what she could do with her pushups ...
 
Tillie that was my concern because the pt that spoke with steve talked about working to fatigue. I told her he is always fatigued...no work needed. She didn't seem to get that.
 
Prayers for you.
 
Thanks for the article and thoughts from all of you regarding exercise - so great to have your input as my learning curve continues to climb, rapidly! One of my big take-aways is that there is a reason i am exhausted, it can be expected if you push too hard, and I need to remember moderation based on my abilities, not others' abilities or expectations.

I really appreciate you taking the time to comment . Thanks so much!
Gotty
 
Dear Gotty,

So many very knowledgeable people have spoken here, and shared
their knowledge and first hand experience with you.

This forum IS so extremely helpful, caring, knowledgeable...and unique!
In my opinion, it is the very best place a person in our circumstances can be.

We are here for you.

Sincerely,
Laura.
 
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