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blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
188
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Hello Everyone!
My name is Cathy and am new here and trying posting for only the second time. Not so certain about how the rules and regulations work and feeling a bit apprehensive. What do I say to all of you?

I am 53 years old and live in Ohio with my husband. We recently became empty nested - our son is at college most of the year and our daughter is a recent college grad living on her own. I am a fourth-grade elementary school teacher looking to retire in one more year. (Not sure what this next year will bring). Many of the things I would use to describe me are becoming impossible or very difficult to do anymore-I used to be highly active with the community, school, and church activities as well as an avid walker and gardener.

I have read many threads and will continue to gain information about my disease from the experts here. We have so much to learn!

I have been on Radicava since March following my diagnosis in January. We found a second doctor who confirmed the diagnosis but offered us a much greater sense of compassion. His office is almost 2 hours away but we feel it is worth it. My infusion takes place at home with my husband or daughter as the daily "nurses". I feel blessed to be in the situation of not having to travel for this to take place. This has allowed me the ability to continue working.

So many questions swirling through my head that I don't know where to begin...Where do we begin? Help us out....

I had about 2 months of OT/PT to start me on adaptive behaviors and exercise routines for home. I now have a toilet seat in one bathroom at home to help with this difficulty. I have had handrails installed in our garage to help with the 3 steps into the house.

I have not started any legal preparations....what do we do here? I have not applied for retirement yet but will do so this fall...do I set up normal retirement insurance?

So gracious for all the replies I anticipate will be forthcoming!

Cathy :)
 

MarieLaure

Forum Supporter
Distinguished member
Joined
May 16, 2018
Messages
210
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
Hello Cathy
So many recent changes. Do your children live far away in their colleges ? How about your husband ? The two of you are sailing through this. It’s a good thing you found this forum. Here you can find practical advice, information, people sharing their experience and also you can find support.
You are not alone
ML
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,405
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
Cathy, welcome to the forum. I am sorry you have a reason to be here, but I am glad you have found us. A more knowledgeable, supportive and lively bunch of people will not find elsewhere. Glad to meet you, despite why you are here.

~Fiona
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,636
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Welcome Cathy. I am sorry you have to join us but look forward to getting to knowyou.

It sounds as if you are doing well as can be handling this

We do have stickies AKA important posts at the top of the general subforum you may want to start reading but in manageable amounts not one great gulp!

For retirement- you should talk to your HR about your specific program. As a teacher you probably have some kind of long term disability and should find out how that works. You also are probably eligible for social security? If you are once you stop working with an ALS diagnosis you should be automatically approved and SSDI and Medicare kick in after 5 months.

I see you plan to work another year. If that makes you happy and you feel up to it that is great. Be aware that some of us find our energy very limited and some of us have found pushing oneself seems to accelerate progression or at least make one less functional. Do what makes you feel well and happy

Please feel free to post often and ask any questions
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,399
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Hi Cathy,

I was also a teacher and part of the State of Florida retirement system through the college where I taught.

I'm not sure how Ohio works but I ended up taking my pension in a lump sum transferred directly into an IRA. I was then able to collect the long-term disability with only the Social Security disability offset. Had I taken my pension monthly I wouldn't get the larger amount for the LTD plus I thought I would be better off with the lump sum. I don't have family so my future needs will play out different than yours.

I'd advise you to make an appointment with HR and discuss your options. I would discuss sick leave, LTD, and life insurance. I was not eligible to continue my life insurance but I stopped working and the college kept me on the payroll until my sick leave ran out. That took me to a month past when my Social Security and Medicare kicked in so it worked out.

I was very high energy but the amount of time and stress it took me to settle things with the college drained me. I probably could have worked another year but I needed to move, sell my other place, and remodel to accommodate future needs. I had to fight to get my LTD because I was eligible for a monthly pension but I converted it before I left so it all worked out.

I would suggest to anyone with ALS: if you can afford it, quit now. Life is just too short and accommodating progression takes time and energy.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
720
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
Hi, I'm one of the lively bunch but headed straight for bed right now. ;) The only advise I can think of off the top of my head is to get good sleep.

Sorry to welcome you. It's very good of you to write a little about yourself and your family. Not much you could do wrong around here anyway, as you're a fine churchgoing kinda gal. Just post away, chime in where you feel like it and come for information and company.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,399
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Also, Greg has a very good manual for ALS. He put forth a lot of effort and time to gather all the great info. Greg is one of our moderators and also a PALS.

It's attached.
 

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whereswaldo

Active member
Joined
Mar 3, 2018
Messages
83
Reason
PALS
Diagnosis
06/2013
Country
US
State
Ca
Cathy

Welcome and I am sorry that you have a reason to be here. First thing to remember, we are all different in how we progress and how we deal with everything that comes along.

My wife and I dug into the school retirement system, even though we are a little different from your situation. I am the one who is diagnosed and she is a Special Ed teacher. But what we did find out is that the way her district is set up, as well as many others, at least in Calif., they do not pay into the social security system and hence she does not qualify herself or from mine due to how their retirement plan is set up. My suggestion is to talk to HR and find what you options are, since they could be different from most peoples.

Come back often and learn and maybe throw some insight our way also. Remember we all deal with this disease differently, find your own comfort and follow that.

Bob
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,452
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Cathy, sorry to have to welcome you here. I second the above recommendations of others. The stickies are invaluable.

Social security/ disability + Medicare are guaranteed for those of us with a documented ALS diagnosis. However, these take effect only after you stop working. As long as you are still working, they don’t consider you disabled. That said, work as long as you can provided that you love your job.

Remember, though, that ALS has a sneaky way of becoming it’s own full time job. If working becomes exhausting, it’s time to quit. You’ll want to do what you can to conserve your energy because it will keep you upright and breathing longer.
 
Joined
Feb 28, 2018
Messages
15
Reason
PALS
Diagnosis
12/2017
Country
CA
State
Maritimes
Hello Cathy,

A quick welcome, I don’t post often but read this forum daily and enjoy the advice and humour here.

I was diagnosed December 2017 at age 54 more than a year after I noticed symptoms in my right leg. I was employed full time but 2 months prior to diagnosis had reduced my hours of work to due fatigue/exhaustion. Just couldn’t make it through a full work day.

I stopped working after my diagnosis. I just didn’t have the energy. Neurologist also suggested I give up driving. I am in contact with work friends but I do miss the purpose my work gave me. As a Canadian I have no advice re: retirement benefits but I do hope you can continue working for as long as you are able if that is what you wish.

I too am an avid gardener. Well mostly an avid supervisor (dictator?) now. My arms are weakening but still work in my flower beds in a sitting position for about 30 minutes a day – it gives me so much joy. Gardening is my daily meditation.

I also have two children, a daughter 24 getting married in a few days and a son 21 who just graduated from university and has set out on his own.

Again, welcome.
 
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