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LinCan

Active member
Joined
Sep 25, 2012
Messages
67
Reason
PALS
Diagnosis
08/2013
Country
CA
State
Ontario
City
Sault Ste. Marie
Hi once again. Two weeks ago I had another EMG, and was given the dreaded diagnosis of "most likely ALS". Before that, I was reassured that this was PLS, so a somewhat better prognosis. I immediately went into a kind of "brain fog" of fear and depression. I'm continuing on with that, while trying to decide on a nursing home or an assisted-living facility - how fast will it progress, can I do two moves, etc., etc. I have a good friend who has helped out so far but couldn't manage the really tough stuff that lies ahead, and my only son(newly married) lives about 4 hours away. I am almost 68, so had a good 65 years of health prior to the onset and really feel for those younger, but am still really off-kilter and very anxious about what lies ahead.
Good news was that my lung function is still very strong and no bulbar symptoms yet. Balance and legs are extremely unreliable, and arms are just starting to feel stiffer and weaker.
I am just venting and I guess searching for some sober second thoughts. It is great to be able to connect with those who understand.

Linda
 
Oh Linda,

So sorry to read this. Good lungs are great news for you. You have tough decisions ahead of you; have you discussed options with your son? Since he lives 4 hours away, is he in a larger city? If you opt for an assisted living situation, would you consider moving to your son's city? He could/would likely visit you more often. ( hopefully with grandchildren in due course?)

I've become increasingly aware that even having my husband, a willing and loving partner, we still need additional help with day to day living. I'm thinking you will also need more assistance as time goes on. I would encourage you to consider assisted living especially if you're on your own. You may well be the young kid on the nursing home block, but by planning ahead and choosing a place you like, you could spend many happy years in a friendly and caring environment. In fact, you could test drive some places by way of short stays and see for yourself if and where you are most comfortable. Think of it as a holiday.
 
Thank you so much for your reply, Elaine. I haven't considered moving to my son's city (a bit bigger) yet, as I was thinking since I would only know them there to come visit, there may be more pressure on them? The assisted-living facility that may become available is not a nursing home but an apartment fitted with lifts, etc., and care provided for meals, etc., by PSWs there. There is someone on call at night as well. It would probably mean more privacy and less structure, etc., but I'm wondering if it would be as safe as the nursing home, where I might have to ultimately go, anyway. I am planning on visiting the various nursing homes in the coming weeks, as there is a bit of a wait to get in one.

I try to believe that I will end up where I need to be, but still not totally convincing myself, lol.

Linda
 
Me again. I am totally astounded. my case worker just called to say I am one point short of being able to apply for a nursing home ( six month wait after that). On e of the problems is that I have a caregiver, and he is helping me because of my extreme risk for falls. I said," So I have to take real chances of injury for a number of months first?" She replied, "Unfortunately, that's the case." I am angry, amazed, etc. etc.

Thanks for listening.
Linda
 
Lie and say you have no care-giver now?

so sorry truly that it is this way for you, so frustrating!
 
Linda,

Call your MLA office immediately. This is crazy! Consider contacting the media and your local ALS office, physician, or church to enlist their help. Trust me, Wynne's minority government does not want bad publicity right now, esoecially in view of mcGintys recent foolish and costly healthcare fiascos. There is no way that you should be hurt any further by the "system" especially since you are on your own fighting ALS. Isn't that enough- suffering from arguably the most devastating disease on the planet? Must you be fighting bureaucracy as well?

If you want to you can PM me and I'll do it for you. Ive been known to be effective in getting things done... This really really ticks me off!
 
Thank you both for your kind words and support. I've just been trying to gather my strength together and start making calls on Tuesday. Of course the caseworker waited till Friday p.m. To call me, so when I called the supervisor I got voicemail and no callback. Anyway I plan to get in touch early Tuesday and inform as to my course of action - calling everyone I know with any connection to healthcare and let her know I have started my notes to pass on to a personal injury lawyer. I figure that might get their attention. The stress certainly isn't helpful, though. (There already is enough stress with this disease, as all of you know.). I really appreciate your offer of help, Elaine, and I'll let you know what response I get.
I think they just expect me to say "Oh, we'll...." and go away.

By the way, at the same time as she was telling me I didn't qualify for care, she asked if I had " end of life" directions made out, etc. (I asked if she could see the irony in that, but I don't think she got it.)

Elaine, I don't know where your strength and wisdom comes from, but you are my hero.
Bless you.
Linda
 
Linda,

As an experienced "sh-t disturber" :shock: Isuggest you don't play all of your cards at once. Something effective would be like

" Madam, your un cooperation is exacerbating my ALS. I suppose I could seek legal advice and maybe initiate a law suit, but we both know I'd likely be dead before the court date. I'm thinking it may be more expedient if I bring this issue to the court of public opinion. What do you think? Shall I go this route, or do you want to save yourself the aggravation?"

Linda - play the ALS card if you have to. What else is it this darn thing good for?

let me know how you do! Good luck.
 
Thanks for the support and advice, Elaine. Well I have a "good news" update. I called the office, and after a long discussion with the case supervisor, I was sent another, this time a "chronic condition" case worker. Things went very smoothly then- I was put on the list and it was suggested I get regular visits from a nurse and possibly a nurse-practitioner to stay abreast of my needs. I haven't been contacted by them yet, but I got the impression that they are taking my case seriously now. I assured her that I don't really "want" to go into a nursing home, but see that as my only realistic option. She seemed helpful and supportive.

Well, onward and upward, as they say. (Sure don't want downward.)
Cheers,
Linda
 
Great news Linda.

I got a helper via the Red Cross. It's free. She's terrific: bed changed, laundry, dusting etc. And she even re-organized a couple of neglected kitchen drawers. Next week, while the clothes washes, we'll cook together. She'll chop & help me make a couple of casseroles or soup. ... Or maybe even a pie! She'll do the washing up too.

These red cross helpers do not provide "personal" care, but I'm extremely happy with their help. I applied via the the ALS clinic, but forms are available on line and can be signed by nurse or physician. Then the Red Cross RN comes for a visit and discusses care options. ( there may be a wait for service)

Hope you have this invaluable service in the Soo too!
 
congrats on your success, Linda! Elaine you really are a shining light!

Max
 
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