My mother has ALS

[Sheldon]

Hello,
My Mother was diagnosed with ALS 2 months ago, but I'm fairly sure she has had this for some time. Looking back there have been symptoms that were overlooked. She is 78 and has rapidly declined over the last few weeks. This all started when she had hip replacement surgery and never really recovered. She was having severe muscle stiffness and cramping and has steadily worsened. She is at a point now that she cannot feed herself and her muscles are so stiff/locked that she cannot move enough to even use a wheelchair or the toilet. Her hsband (my stepfather) is doing all he can (he is retired) but he is strugling to provide her basic needs. The family has stepped in to help with food, cleaning, and of course moral support... but we all feel so helpless. She is adamant that she will not go to a 24/7 care facility (she is a retired nurse) so everyone is trying to support her in this.
She is on various medications but the muscle relaxers do not help except to put her to sleep. I'm not sure if I'm asking for anything... just venting.
Thanks for listening!
Sheldon

 

[Ms. Pie]

Re: Newbie

I'm so sorry you find yourself here. Welcome to the forum Sweets. There is a lot of information on this site, many knowledgable people to ask any questions you have. Has your family contacted your local ALSA yet? They can point you on the right direction regarding equipment loans, counseling, doctor recommendations, anything ALS.

 

[Sheldon]

Re: Newbie

Thank you for the reply. I just found the contact information for my area. I will call them in the morning.

 

[momap53]

Re: Newbie

Welcome aboard. So sorry that your family is dealing with this. Get your Mom registered with the local MDA chapter too. They have an ALS division and will provide you with a Caregivers' Guide and lots of basic information about ALS. The Archives here on the forum are easily searched to get information or others advice on specific situations or equipment.

 

[cervus]

Hi Sheldon. Sorry you have to be here. Don't feel helpless. At this point there is so much you can do to get your mum on the right track as far as contacting the right people, having the right equipment installed but mostly reading up and keep a step or two ahead of progression. This is where the ALS Association and Clinics come in so much handy. It's such a tough disease to have to live through, for everybody involved. Take care care. It's great that you're there for you mum. Yasmin

 

[notgivnup]

Hi Sheldon, so very sorry your mom has this also, but you have come to the greatest place for love and support, not to mention knowledge and some wisdom to share. We are here for you 24/7 usually from all around the globe as a family brought together to help support and encourage each other. {HUGS}

 

[beckysuenc]

So sorry to hear about your Mom. Like others have said, you have come to the right place. A lot of knowledgeable people here.