Diagnosed with ALS/MND May 2017

[Calisteros]

Hi my name is Rob.

i'm a 34 year old that was diagnosed with ALS or MND as it is called here in Australia in May.

i have had balance and drop foot issues for the past 12-18 months

i also have issues with my left side, including wasting in my left arm and fingers that i can't straighten in that hand.

i've had two major falls including one that opened up my forehead to the skull which was the precursor to the testing that confirmed my diagnosis.

As a younger person my diagnosis was a total shock and unlike many others on this forum i do not have a partner. this worries me immensely as how can i consciously start a relationship with the thoughts that i don't know how much good time i will actually get and who will fall in love with someone like this. i also wanted kids but think that will not happen now. Are there other single people with this disease who can give some ideas of how to deal with these thoughts

I do have parental support but obviously as an independent man it scares me that i will lose that an will have to go back to the childhood home.

I am a very positive person but i have my moments where I think what did i do to deserve this cruel disease.

Here's to the long haul.
Love Rob

 

[soonerwife]

Welcome Rob! Sorry to hear about your dx. You have found great place for information and support. There are some PALS without a partner. I am sure they will chime in.

 

[Nikki J]

Hi Rob

Sorry you have to join us but welcome.

No matter when ALS strikes it takes away hopes and dreams- especialky if you are young and single. You will find your way even if you need to adjust those dreams. Some single PALS have found relationships. And other single PALS have lived independent of family with support services- by choice and by necessity.

Think about supports that you have and discuss with social services options available. Make a plan b too.

Hoping you have a slow progression. Look forward to getting to know you

 

[lgelb]

Hi Rob,

Depending on your resources and community, you may not have to move back home. But even if you do, there could be benefits for all of you. The person you've become is surely not the one who left.

Some here have indeed begun new relationships with ALS, or taken existing ones to a new level. What your life will or can be isn't written. If you remain open to meeting people (as you should, because that's part of living), and you find someone special, the two of you can take it from there for however long the path unwinds, however's right for you both.

You will definitely have "why me" and "how this" moments. As with any feelings that you'd rather not have, it's how you respond that's under your control.

Welcome.

Best,
Laurie

 

[KimT]

Hi Rob,

When I was dx in 2015, I lived alone. I quit my job as a college professor and spent the next year getting all my financial affairs in order and separating from the college.

I really wasn't sure what I would do next. I have no children. None of my extended family offered to help and they started visiting much less. I had worked for the same college for over 25 years, was highly productive, and had many friends there. Most of them stopped all contact once I left my job.

A long-time friend and I decided to buy a large condo together across the street from the best beach in the area. We both sold our houses, had estate and garage sales, and moved. I had a small toy fox terrier and my friend loves him and helps care for him.

My housemate really isn't my CALS but it helps to have someone in the place who can help me, if needed. We also share expenses and this has been a great help. I have a new life here and am starting to meet people. Life is not over for me. This morning I swam in the 87-degree pool and tonight I met up with 8 other ladies and we played cards.

You can meet someone and you have more living to do. Things can and do change so don't lose hope. Focus on the things that make you happy.