Feeling Sad

[Starburst]

Hi,
My brother, in his early 30s is in the process of being diagnosed with MND, the type yet to be determined.
Understandable he and his wife are devastated but managing with the flurry of tests, information, and general uncertainties that come with this all. My parents are equally devastated blaming themselves for this predicament despite reassurances they have no reason to.
However, me as his sister, this diagnosis has literally knocked the wind out of me and I am struggling to cope with the news and the eventual life and prognosis he faces. I know this sounds so selfish and that it isn’t about me but my brother but my feeling of helplessness, the inability to ‘fix’ this for him and make it better is overwhelming me. He doesn’t know how I feel and I don’t want him to and as I am writing this I am crying and feeling angry with myself for doing so.
I guess I just need to know that this feeling is normal, the feeling of being unable to protect my younger brother from what will come.
Thank you for reading my ramblings x

[Terry]

Hi Starburst and welcome to the forum;

Sorry to hear of your younger brothers troubles.

What tests has he had done and what symptoms does he have?

It is normal to feel angry and devastated with any diagnoses such as this.

Best wishes, Terry

[Starburst]

Hi Terry,

He has had every test under the sun to rule out possible causes and we are at the stage where they are talking PLS/UMN ALS. His progression has been quite slow starting with speech initially. In fact it was so subtle it is only now when we look back he had slurred speech for about 2 years. Last year he had difficulty in mobilising that led to him having falls. He looked absolutely dreadful and we were left fearing the absolute worst. Roll forward a few months he has gained some weight and looks well but the shock of this diagnosis has knocked us all for six. He can mobilise albeit slowly and stiffly and has wasting in his hands. He is trying to be strong and positive but I know he is struggling with no real confirmation of what is happening.

[Terry]

Hi Starburst;

I guess he's had a EMG then?

I have mainly PLS and little bit of ALS as well. Been ten years since my devastating diagnoses. He should have a defiant diagnoses if possible and I got a second opinion, not because i doubted I had Mnd but I didn't over like my neruo and wanted more information.

I hope your brother can soon move on and start living life the best he can.

Love Terry

[Starburst]

Thank you for your kind reply and yes he has had his EMG. My brother seems very happy with his Consultant but like you say needs a definite diagnosis in order to move on.
Thank you for taking the time to reply to me, it genuinely means a lot.

[Kayleigh]

Hello Starburst,

Welcome to the forum. I am very sorry to hear about your brother being so unwell. Understandably this must be a very difficult and distressing time for him, you and all of your family. Sometimes it's not easy to talk to those close to you about your feelings because you don't want to upset them. It is good you have come to this forum for advice because we have an understanding of what you and your family are going through, and you are welcome to join in on this forum as little or as often as you like.

The Mnd Connect helpline is also available if you or anyone in your family wants to talk to someone about your worries or concerns.

There is a lot to come to terms with and so please don't hesitate to keep in touch with us on this forum, if you would like to. We are a friendly group and we try to support each other as much as possible.

Love and best wishes,
Kayleigh xx

[Starburst]

Thank you Kayleigh, I have looked through many of the posts on here and you seem such a supportive forum. I think just by knowing I can ask anything helps xx

[shrew]

Welcome Starburst, sorry to hear of your Brothers diagnosis x

[Barry52]

Hello and welcome Starburst,

I’m sorry to hear about your brother and I understand how this impacts on you and your family. I would encourage your brother to seek confirmation of the MND type as pure PLS is not life threatening, albeit very difficult to live with. He should get a support network from the hospital where he was diagnosed but if not then seek out the nearest MND care centres. They are listed on the MNDA website.

Best wishes,
Barry

[Gillette]

Hello Starburst and welcome to the forum. I'm so sorry that you are all going through this. It is overwhelming for each of you. I think you have been wise to come onto this forum to find help and support. I'm sure you have already realised what a great place this is. I hope you will feel able to use the forum as a safe place.

[Lynne K]

Hi Starburst. I too am sorry about your younger brothers situation. I second all of what's already been said. I wont repeat. I hope that a definitive diagnosis comes soon and you can all adjust to this horrid journey and have many future happy hours together.