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Danijela

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PALS
Diagnosis
11/2008
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UK
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Bolton
Hi All,

I am 36 years old with a partner who is 41 and has been diagnosed with ALS (upper limb onset) two weeks ago. He noticed weakness in left hand while playing bass approx 1 year ago and after a series of tests over the oncoming months he was officially diagnosed at the specialist ALS clinic (they call them MND clinics here) in Manchester, UK. In this post I would like to ask for some practical advice with regards to continuing work post ALS diagnosis. I understand that for many people the ALS comes at the time when they are considering retirement so they may take an early retirement, go part time and so on.

My partner works with computers (data analyst) and his work is very important to him. I would be glad to hear any experiences about working following ALS diagnosis, how you coped, adjustments you had to make in the workplace, practical advice on equipment that someone with upper limb onset may require to continue working (only his left hand is affected at the moment and he can still use keyboard and mouse) so that we can inform the Occupational Therapists in his work place of what may be required in the future. I have read a few reports about the gap between the needs arising and the mechanisms of support being put in place, so we are both trying to be pro-active. We are aware that symptoms can vary and develop in the unexpected ways and that one has to play it by ear, but still it would be good to hear other people's experiences of continuing working post ALS diagnosis even in unpaid/voluntary capacity.

I found advice on hand splints very useful for example, and he will consider purchasing some, so thanks for that one forum! Danijela
 

CindyM

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Hello Danijela, and welcome to the forums. I am sorry to hear about your partner. Folks around here are very helpful and quite knowledgeable, so somebody will be answering soon. I just wanted to welcome you! Cindy
 

BethU

Extremely helpful member
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Hi, Danejila ... I retired in 2001 before my "serious" symptoms started in 2006, but was doing volunteer work for a non-profit, and free-lance work almost on a full-time basis until June, 2008. I was doing the same work I had loved as an employee, without the things I didn't like on the job! But this year, two years after my symptoms started, it became too much. I had created and planned out a large conference for June, 2008, but was so exhausted and ill from the build-up of stress that I could not even attend it, let alone lead it.

There were several other projects I had created and run for this organization, as well as editing their journal, but I decided in June that it was not healthy for me to work on deadlines under stress any more. So I "retired" again, and this time it was a relief to stop.

If your partner's work is important and gratifying to him, and it does not exhaust or stress him, I would say he should keep working as long as he feels capable and as long as his neuro agrees. Perhaps he could cut down to part-time before going cold-turkey, or perhaps he could work from home.

I say that not only because of ALS, but because there is a decompression period when you retire, especially if you love your work. It was very helpful to me to be able to continue to work at what I loved doing.

We lose so much with ALS, I believe in hanging on to the activites that matter to us and living a "normal" life as long as it is safe and healthy to do so. I am still working as an artist, and exhibiting, etc., so I still feel productive, even though I'm only working on that a couple hours a week.

I know there are forum members who continued to work after diagnosed, so hopefully they will have lots of practical tips on useful devices, etc. I'm speaking only about the psychology of retirement + ALS.

Good luck to you and your partner.
 
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Danijela

Senior member
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663
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PALS
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Bolton
Thanks Cindy for your welcome.

And many thanks Beth for you inspired thoughts, especially about the psychology of retirement and 'decompression' period. My partner is not on this forum but has read the post from my screen. Art is the best type of 'work' so I hope you keep it going. Danijela
 

kevinw

Distinguished member
Joined
Apr 15, 2008
Messages
203
Reason
DX UMND/PLS
Diagnosis
01/2008
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US
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PA
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Poconos
My Situation

I continued to work as long as I could, although my specialist is watching mine as PLS with the possiblity of ALS. Mine started with my left leg and then problems with my right leg and left hand. I firmly believe that my left hand started with problems before my right leg did, although it all started with my left leg and foot scuffing and tripping. Long story short, I was a estimator for damaged vehicles at an autobody shop and found out that I could not longer lean down or bend over looking for damage without going off balance and falling (in front of potential customers), then on cold days or if I got really nervous I noticed I couldn't walk after I stood talking for a minute (my legs felt like straight boards). Then if it was cold outside looking at a car, when I came back in to write the estimate on the computer my left hand could not keep up with my right hand in typing, the fingers were just too stiff. So, after a period of time trying to put in 42.5 hours a week and being on my feet most of the time, my legs were just too exhausted and pulled/aching by the end of the day they would shake and give me problems all night long trying to sleep.

I hated to do it, but we just couldn't figure out a way at work to avoid the things that I needed to do to perform my job without being on my feet so much. So now I'm home and trying to take it as easy as possible on my legs, and I can honestly say that I firmly believe my balance is still getting worse and I am still having problems with steps, but I can not imagine how much worse it would be if I were still attempting a full day.

I find that drawing, which as always been a hobby of mine helps keep me busy. It is also something I can do right handed that doesn't keep reminding me of the problems with my other limbs.
 

brookgolf

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PALS
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04/2008
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US
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ny
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Saratoga
Still work part time

I was diagnosed with ALS in April and continue to work part time as a computer analyst. I find work helps me keep my mind on something else other then ALS. The folks where I work have been great about accommodating me.
 

ptich

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In my case, I'll go on disability the very same day I am diagnoseded, because I am very tired, and would prefer to spend most of the day in bed if I could. My work is also important to me, but rest - both physical and mental - seems more important now.
 

brendapals

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PALS
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06/2008
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still working part time also

Hey there Danijela
I wanted to also welcome you to the forum. I'm still working 3 or 4 days per week in a physicians' office. I'm a registered nurse. The office manager has been very easy to work with, I used to start about 30 or 40 IV's every week, now I start maybe 5 or 6. I have another nurse working very closely with me, so that helps a lot.
Wishing you and your partner all the best,
You will find a lot of support and friendship on this forum, it is the greatest!
take good care,
brenda
 

Danijela

Senior member
Joined
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Messages
663
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PALS
Diagnosis
11/2008
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UK
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UK
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Bolton
I understand that different people approach the situation in different ways and that physical and psychological symptoms vary as well as that the nature of work and support available can influence your decisions. KevinW - you were doing some long hours! But great that you can still do drawing. Brookgolf and Brenda - it is inspiring to hear you are still working and that your workplaces have been accomodating. And Ptitch - sorry to hear about your fatigue. Does you response mean that you are not diagnosed but have symptoms (i.e. fatigue) ? Also, I would like to know what onset and symptoms you had, Brookgolf and Brenda - if you don't mind sharing. I am still under my 10 posts so can not see people's private profiles and receive private messages.
My partner has been complaining about fatigue for years, ever since I have met him, for about 8 years now. I always put it down to being 'a tired person', or not getting enough sleep. I now feel somewhat guilty. I have been reading a lot of articles on ALS (being new to all of this) and found in one that people often use words "fatigue" and "weakness" interchangeably when describing their symtpoms. I asked my partner if he means "weakness" when he says that he is tired but his reply was "no". All the best to you all. Danijela
 

Jennifer51

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Joined
Jul 7, 2008
Messages
441
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PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Hi Danijella...have you contacted the mnd association...they are brilliant and will advise on all sorts of things and open doors for you. Have you applied for the Disability Living Allowance..It is not means tested and you are allowed to claim from the moment you are diagnosed...mnd association will advise as to how you should fill in the form. Once you get the DLA that also opens a lot of doors for you..like getting your blue badge etc. as to working, we have a friend with limb onset and he continued to work only part time as long as he could, kept him sane. I have bulbar, was not working anyway, but use the computer all the time, it is the only time I feel ...normal...I can communicate and no one has difficulty understanding me....I did send you my email address in another post, in relation to UK things to do.
 

brendapals

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Joined
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Messages
953
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PALS
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06/2008
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US
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any
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any
hey danijela,
In a nutshell...

May 07- had an EMG/NCS done due to some numbness in my hands and feet off and on, with a final impression of some mild carpal tunnell syndrome

Dec 2007- occasional slurred speech, sounded more like a few too many drinks

Mar 2008- carotid ultrasound after slurred speech got worse, and I thought perhaps I was having a stroke!

Apr 2008- MRI of my brain, since my mother had MS, looking for something, found nothing, including a brain-according to my children!

Jun 08- first visit with neuro at IU Medical Center, explained what had been going on, diagnosed with bulbar onset ALS

7/1/08- first ALS Clinic visit- my family went with me, met a lot of people, FVC measured at 98%, started taking Rilutek twice a day

7/31/08- began fundraising efforts for my first ALS Walk, to be held in Southern Indiana

9/27/08- I walked the 2 miles in the ALS Walk, along with 300 or so of my closest friends, and we met, and exceeded our fundraising goal, the goal was 10,000, we raised over 18,000. Not bad for an old KY girl, common as dirt, with a lot of good friends!

10/28/08- second ALS Clinic visit-I drove myself the 4 hr trip, saw the same people I met in July, FVC remains at 98% ( I only throw that in since I am a smoker-)

12/4/08- our ALS Walk team was recognized by the Indiana chapter as the team with the second highest fundraising amount! ( still waiting for my plaque to come)

12/13/08- I will graduate from college, finally, with my bachelor's of science in nursing.

That's a very, very brief overview, hope it helps, let me know if you have questions,
-take good care,
brenda
 
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John1

Very helpful member
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Feb 25, 2006
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10/2000
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Newfoundland
Hi Danijela,

Your partner has a job that sounds well suited to permit continued working. More power to him. I am a research geologist but most of my work involves a computer. I have been fortunate to have slow progression, an understanding employer and helpful colleagues who do field work for me and collect my data. I was diagnosed 8 years ago and still work and drive. I use a scooter for mobility and a wheelchair rampvan to commute to work but I still type OK with only somewhat reduced abilities. There are various typing aids available which by all accounts permit typing through eye movement when hand control is gone. We have some members who use them and perhaps they will chime in. Because the cold really impacts me now, I go to warmer climates for a few months in the winter with my employer's blessings. I would recommend that if circumstances permit.

One unusual "aid" I have is my dog. Although there is a ban on pets in my building, my boss went to bat for me when I started bringing him to my office in the afternoons. He is a small, hypoallergenic, very friendly and quiet (but very high spirited) dog developed as a therapy breed. I used this angle to get around the pet restriction and now he is a regular part of the department. So much so that he gets as many visitors as I do. I get a great psychological lift from him. Much better than medications. Inside, he rides on the floor of my scooter so he doesn't startle people. (Except when he jumps off in the elevator to sniff someone's leg or worse). Right now he is napping next to my desk.

Keeping actively involved in life either through work, volunteer efforts or other pursuits is, IMHO, helpful in coping with this disease.
 

Danijela

Senior member
Joined
Dec 3, 2008
Messages
663
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
Hey Brenda and John,

both very inspired accounts. After reading them I walked to the post office (a task I have been putting off for many days due to not wanting to encounter anyone) with a renewed sense of promise, feeling almost 'normal' for the very first time after my partner's diagnosis. And that dog - I can SEE him on the scooter! We both love animals. Danijela
 

KayTee

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Joined
Oct 9, 2007
Messages
8
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Friend was DX
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US
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FL
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Jacksonville
I joined this forum because of a co-worker, in his mid-50's, who was diagnosed 2 years ago. Symptoms started 3 years ago. He continues to work with the help of others. He rides to and from work with co-workers. He gets help with his daily needs at work. He will continue to work as long as he can. His speech is really getting bad, but others will communicate for him. We couldn't imagine it any other way, and we feel that his job is what keeps him going. What he doesn't realize is HE is what keeps US going. He is such a wonderful, intelligent person that we have grown to know and love and he's so valuable an employee.

He now uses a wheel chair. He can't stand without assistance. He has a hard time clearing his throat. His attitude is really good considering the circumstances, but sometimes he gets angry and frustrated because he knows what he wants to do and say, but he can't make it happen.

What's frustrating is he doesn't seek help from any organizations and I often wonder, "where do we go from here"?

Another problem he's starting is he can still eat (we feed him) and swallow okay, but he has a hard time swallowing liquids. Perhaps it's because of the consistency?

Another problem, too, is when he lays down he said it feels like he's being bitten by hundreds of fire ants. I don't know what is causing this.
 

CindyM

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I don't know about the fire ant sensation. Sounds uncomfortable! But choking on thin liquids is common for many PALS. He might try a product called "thicket" which he can buy in most drug stores. It does just what you would suspect- thicken liquids so they are easier to swallow. Tell him to try tucking his chin after he takes a mouthful of thin liquids, like water or soda or coffee. It helps the swallowing mechanism, for a while anyway.

Hope this helps...Cindy
 
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