dad newly diagnosed with mnd

[steshell40]

hi im new on here and my dad at 66 has just been diagnosed with mnd, devestated isnt the word and it makes it harder as i live over 200 miles away from my parents and sisters x dont think it has sunk in yet originally diagnosed as a mild stroke nearly two years ago waiting for letter to go see a specialist to get more info on how its progresed x at the min its just slurred speech x

 

[weavie]

I feel your sadness. My mum has MND and also has the bulbar onset, affecting speech, swallowing and breathing. It will be a tough road. Make the most of every minute you have together. When my mums speech started to go, I said to myself I would talk to her every day. Even if I can't visit her, I call her every day and have a chat. It is almost impossible to understand her now. At least I know in my heart I have made the most of that time. Being so far away, you could always use Skype or face time to speak to and see each other as often as you can.
Be strong x

 

[HeyDonnaDonna]

Weave is so right! My time with my father after we received his diagnosis was very short. I visited him 4-5 times a week. But I regret not telling him my feelings. I was trying to wrap my brain around this death sentence he had been given......to talk about how much I appreciated all he did for me and my sister, his sacrifice for us two, it was a bit overwhelming. I didn't want him or myself to get too emotional.....considering his breathing was labored, difficulty swallowing was setting in. I didn't want to make him have any issues. S from this experience, I love that you could call, Skype, write letters/send cards....do all you can! Say what you need to! I pray and will think of all those suffering as well as their family members trying to cope and stay strong!

 

[steshell40]

thanks guys x going to see parents in april when kids off school x

 

[zoohouse]

Sorry that you too are dealing with this disease. My husband has 4 kids, and 3 of them live 2000miles away. He always enjoys Skyping with them, and we have flown his youngest here 3 times in the last year. We have offered the same to the other 2, his oldest, but so far neither have taken us up on it. His youngest daughter moved here from TX to go to college and lives with us. Use the time that you have with your father to the fullest, and you won't have any regrets. I can't imagine grieving the loss of someone that I lost and also regretting not doing all that I could to tell and show them I loved them. I know it can be difficult to go distances, especially when you have kids, but there are always ways to communicate. Come to this forum for support, and as you can see there are many young people in exactly the same place as you, and you can lean on each other, or others on this site when things feel too heavy. God Bless You.
Paulette

 

[steshell40]

Thank you paulette it means a lot x