Hello from a new member. My nickname, EvelynMW

[EvelynMW]

I was diagnosed with a familial form of MND, last August. So far my symptoms are few, but sufficient to cause me to give up my part time job. I am now 66 years of age, married with one daughter, adopted as a baby from the USA.
I started taking riluzole about a month ago, (April 2021) and am now having, what i believe are, side effects. They seem less today, and i am hopeful that they will soon disappear.

[Ellie]

A warm welcome to the Forum, Evelyn.

I saw your other posts and, yes, the majority of members here are based in England, others are in different UK nations and further afield.

It's good that your ALS is slowly progressing - long may it stay that way! Sorry you inherited a familial form, do you know the gene involvedas I'm sure you would be anxious to participate in gene-specific trials, should they exist.

Love Ellie.

[EvelynMW]

I have the most common familial gene, C9orf72. Think that is all of it. Recently was turned down for research as progressing too slowly. Good in one way.....

[Ellie]

Recently was turned down for research as progressing too slowly

Blimey, you just can't win, can you... 😯

[slp]

Hi Evelyn

Welcome to the forum. Feel free to ask anything however trivial it may seem

kind regards Sarah x xx

[Gordan1111]

Hello Evelyn. Welcome our select club. x

[Barry52]

Hello and welcome from me Evelyn. Reading your other posts leads me to believe that you may have been expecting this bad news, however that doesn’t make the shock of a diagnosis any easier. I hope you can tolerate the side effects of riluzole.

Best wishes.

[Lynne K]

Welcome onboard Evelyn (same name as my mum). I’m the same age as you and I too have the C9ORF72 gene fault. My niece tested positive for it too. She’s have IVF (and some other procedure) so that they can eliminate the faulty gene in any foetus so her kids won’t carry the gene fault.

I hope that you have all of the services that you need. Love Lynne x

[denise]

Hi Evelyn
It's nice to meet you. My husband diagnosed 2 years ago. Hes having a bad time at the moment but we do our best to make things easier. Taking 1 day at a time seems to work for us.

taking the medication is something we have all discussed over and over again. Sometimes hard to tell if it's the medication or the disease. My husband has decided to take 1 pill a day. No idea if this is the right choice but it's his.

lovely people here to share everything with. We are all here to support each other as best we can.

love and hugs Denise xxx

[EvelynMW]

When my mother died, i was told there was no chance of me getting it, she died in 1979 long before they found any familial links, so i was not expecting it. My sister is having to go through several hoops to get a genetic test. She is 72 and has had severe bipolar episodes: now under control thank goodness!. She is taking the test for the sake of her daughter, who had a baby about 9 months ago. We will all be hoping she did not inherit the faulty gene, but we just have to wait and see.
Fortunately, i have never been a worrier, but my husband is, and he worries every time i go out without him. I wish i could help him, but he needs to help himself. We have not told my mother in law, or my father, it seems unnecessary at this stage.

[matthew55]

My dear departed mum gifted me with Bulbar Onset. Luckily I have dealt with countless other famillel issues so one more is nothing. 😉😀x

[EvelynMW]

I don't even know all the terms yet! Will have to look up a glossary.

[EvelynMW]

Following advice from MaryC (can't recall her proper nickname) i am now taking only 1 pill a day. Once i feel totally like myself again, i will increase slowly up to 2 rilizole.

[richard]

EvelynMW Welcome Evelyn, you are amongst many like minded and like you on a journey we don’t want, friends here.

Richard

[EvelynMW]

It feels very selfish to want to find others like myself, so many others so afflicted have their life expenctancy cut so short. I can only wish that each person so afflicted can reach the mindset like my mother had, and Rob Burrow has. I am here ready to support anyone i can.in whatever way i can