very fast progression

[Al]

When I was a kid my dad always said he didn't trust people with beards. He wondered what or who they were hiding from. I don't think you're trying to hide much Al. You've pretty much bared your soul here.

AL.

 

[Debbie53]

Reading some of these posts brings back my dad's last months...he died in October, 2 months ago today, and also had a very fast progression. The second neuro he saw thought he had Guillane-Barre syndrome. The first one thought ALS - we never heard that possibility until August! I'm angry at the "medical community" (counterproductive, I know) for not taking him more seriously before it got to that point. But I'm also grateful that he didn't have to suffer badly for a long time.

I guess my point here is that it can progress faster than you'd imagine possible. I'm awfully sorry for anyone to have to go through what I did. Then again, your experience may be totally different. I really don't know what I'd have done without this forum, with the opportunity to "talk" with people who care and understand even though they don't know you. Because they've been through or are going through it. Best of luck.


Debbie

 

[bigstu]

Sorry, you probably can't private message me yet, but if you leave an email address I will send you a message. Danijela

Hi Danijela and apologies for the length of time it has taken for me to respond Let me give you an update to my last post in November. My Dad now has a hospital bed in the living room and a wheelchair which my Mum uses to help him around. He got one of these electric chairs from the MND society which is a really big help. He is losing a lot of weight and must be nearly have the weight he was in September. He is also understandably very depressed. I decided on Christmas day to propose to my Girlfriend so that my Dad would see my get married and the earliest realistic date was in Early June. After speaking with his Nurse it is unlikely he will be able to make this date now as she is pretty sure he will be completely bed bound by then. This is all difficult to come to terms with and I guess like a lot of guys I bury my feelings inside for another day but I know I'm near to exploding which is why I'm back on here.
Thanks again for all the kinds words so far

 

[CindyM]

I am sorry to hear this, Stu. Visit anytime and vent as much as you need. Cordially, Cindy

 

[Danijela]

Stu, thanks for the update.

I am sending you a private message. Sorry to hear things are moving fast. Even if your dad can not make it to the wedding due to being bed bound I hope you can find other things you can do together, like sitting together reading a paper or watching a good programme on TV.

When it comes to feelings we are all different in how we deal with them. But I know people on this forum are happy to listen and share.

Danijela

 

[bigstu]

Stu, thanks for the update.

I am sending you a private message. Sorry to hear things are moving fast. Even if your dad can not make it to the wedding due to being bed bound I hope you can find other things you can do together, like sitting together reading a paper or watching a good programme on TV.

When it comes to feelings we are all different in how we deal with them. But I know people on this forum are happy to listen and share.

Danijela

Thanks again Danijela for the advice and kind words