Progression Worries :( and boredom suggestions

[Lily321]

Hi everyone,

I am worried about my mums progression and just wanted some answers to prepare myself.

My mum began having slurred speech in July 2013. Since then it has progressed and she now cannot speak apart from simple words like yes or no, but even then it can be hard to understand. She cannot swallow anything anymore without choking and relies on her PEG feeding tube, which was fitted last week. Her legs have got worse and she falls over 3-4 times a day. She can't walk far now either without getting very tired and when she does she is very wobbly. She is also very depressed and often cries about what's happening to her.

I am very worried about my mums progression as it seems to have progressed very fast when you consider that this time last year she was perfectly normal. I am also very worried about her mental state. She gets very lonely and very bored which gives her time to think and worry about what is happening. My dad is trying his best but it is very hard on him too and my brother is autistic so he finds it hard to comprehend what is happening.

I want to know whether my mums ALS is progressing quickly or whether this is normal. I am aware that it is not the same for everyone but it would be nice to hear what people have to say.

I am also interested in knowing what people do when they are bored? My mum is very restless and needs things to do as she is not used to being in the house for such long periods of time.

Thank you for your time.

Lily

 

[dalvin]

I can only respond to your last paragraph. When the weather is nice I spend a lot of time sitting outside watching the birds and squirrels and other animals.if you can get her to come on the forum here it will help in knowing that she is not alone in this fight and also in learning what others have done. Also good place to socialize with other people who know first hand what she is going through. I also work crossword puzzles and read a lot to help alleviate the boredom. I too was very active before this

 

[Lily321]

Thank you for replying Dalvin!

Sitting outside is a lovely idea, but unfortunately the weather here has not be great recently, hopefully when Summer comes around she can do that more!
I have suggested the forums to her and she seemed interested, so I will encourage her to come on here and connect with others as I feel that it will make her feel less alone, as you said.
She has tried reading but often finds that her mind wanders too much. The puzzles are a good idea so thanks! I will suggest this to her tomorrow and see about getting her some puzzle books to try.

 

[affected]

I'm so sorry Lily, this disease is indeed distressing. Bulbar onset ALS is often the most rapidly progressing. My husband had bulbar onset and passed not quite a week ago, less than a year after diagnosis.

Audio books might be a good thing for your mum? Local libraries loan them out, all you need is some kind of audio player, I play them on my phone. The good thing is they are so portable, so she could be in bed, in any room in the house, or even outside watching some beautiful nature.

Do encourage her to come here, sit with her and show her some posts, maybe this thread of yours to see that you came and we responded and would welcome your mum in.

Is your mum on any antidepressants? Maybe get your dad to talk to her doctor about this.
Do tell her though that crying about what is happening to her is valid, and I would do the same!

 

[Lily321]

I'm so sorry to hear about your loss Tillie, I hope you are well.
It is very distressing, I am currently at university and find it hard not being around, but my parents are encouraging me to finish.
Audio books are a good idea, thank you! I had not thought of that one! I know she will be willing to try anything, so I will suggest it to her.
Yes, I know she will find it helpful to come on this site, she always says that she needs to talk to others who are going through the same as her as she often says she feels alone which is very upsetting to hear
She is on antidepressants, and has been for many years prior to her diagnosis. She has suggested to us she would like some counselling which she believes will help and I agree that she should talk to someone about her feelings and worries.
It's very upsetting to see her crying and often causes my brother distress, so we try to encourage her to be positive and make her laugh as much as possible to try and make her feel better!

Thank you for your reply!

 

[Barbie]

Hi Lily,

how are her hands holding up? even if she loses use of them, there are many products to help her stay connected on the computer. the internet has been my husband's life saver. he has no use of his hands, and runs the computer with a smart nav infared controller. he loves to go on facebook and email family. he also has learned to use photoshop and has restored old black and white photos and designed marketing pieces for our company. he likes to listen to books and there are computer programs that are like kindle. the one he uses is audible . com he also has figured out how to download movies and watches them on his computer. He never joined this forum, but that is probably the best for me

It is a challenge to stay busy when you have physical limitations that are changing rapidly. I think you are a lovely daughter to want to help. another thing you could do is find an online game that you could play together. I suggested that to my husband and sons... they both like chess. something that would not require fast reflexes and good hand eye coordination. you guys could chat and play at the same time.

 

[rosec]

It is very distressing, I am currently at university and find it hard not being around, but my parents are encouraging me to finish.

I agree witht your parents about university. Both of our children were in college when their dad was diagnosed with ALS, and they have both finished now. My husband feels very proud of them.

My husband also gets on the computer everyday. He can still use a mouse to point at the letters on the on-screen keyboard and uses a foot-pedal mouse to click. Lot of his friends send him emails with jokes and links to youtube videos.
He uses the Kindle app to read e-books on the computer.

 

[GilWest]

Your story is mine. We are having the same nightmare. We started about July of last year, too!

 

[SMP51]

facebook has been a God send for my husband. not just the "friends" but all the groups, like the local news' postings.
And google earth! he drives all over the world. last week he visited the little village he grew up in in England, drove right up to the front of the farm house he lived in! lol.
and you can totally get lost on you tube, right?

and I find peoples lives are busy, so I remind people to come by the house and visit even if it is just a moment or two, it breaks up the day. but they do need reminding, life is busy and they get distracted so a gentle reminder sometimes is all it takes. I ran into a friend at the store and she mentioned she was picking up her two new puppies from the vet, who is very close to my house. all it took was saying that Steve would love to see the puppies and that was her first stop before taking them home, she was tickled to do it but would not have thought of it if she had not run into me

 

[Lily321]

Hi Barbie! Her hands are starting to become weaker. She finds it hard to open things and drops things quite often, but after speaking to my dad he says she's always been a bit like this, it's just got worse with her ALS. She has tried to use the internet as much as possible and bought an iPad and a Nexus tablet so she could get online wherever she is, but she has never been very good with the internet and she does struggle a bit. I have been downloading some films and TV series for her which I'm hoping she can sit down and watch when she is bored I set up a Facebook account for her which she had been using but recently and she enjoys connecting with people she hasn't spoken to in a while! I like the game idea she enjoys playing board games with my dad and I, but he is at work so I will try and find some two player games she might be interested in! Thank you for your reply!

Hi Rosec! I am keen to finish but I am finding it hard being away when I feel she needs me I like the idea of looking at YouTube videos my mum loves cats (we have 3!) and I'm sure there are thousands of videos of cats on YouTube that she would enjoy, I often send her videos I find when I am at uni! Hope you are your husband are well, thank you for your reply!

Hi GilWest! I'm sorry to hear that you are in a similar situation to my family and I, I hope that you are copying okay!

Hi SMP51! Facebook has definitely been a help with my mum too! Ohh I love Google Earth, you can get lost for hours exploring new places! I think she would like that, maybe I can show her our old houses, like your husband does! yes, I agree that peoples lives are very busy these days. My mum has lots of friends, who have been very supportive and visit as often as possible, but sometimes they cannot make it which can upset my mum as you said, a gentle reminder can be enough to remind them to come and visit! Ohh that's lovely, I expect seeing those puppies made his day, I know it would have made mine! thank you for your reply!

 

[MaxEidswick]

>Her legs have got worse and she falls over 3-4 times a day

I am sure many have advised about the danger of falling. Do what ever you can to protect her from falling!

 

[Lily321]

We try our best but it is hard to be around her all the time, especially when I am at home on my own with her. She is getting a walker soon so she can use that around to house to steady her, should be here tomorrow!

 

[Barbie]

Lily my husband has become quite enamored with baby goat videos on you tube--(they are ADORABLE AND SO FUNNY!)

when you go back to university you could Skype her or facetime if you both have iphones.

 

[Lily321]

Aww they sound interesting - i'm going to take a look!
I've been at university 4 years now and over those 4 years we've spoken about using Skype hundreds of times but we have never got round to it! Maybe now is the time I think it would be nice for me to see her and dad together and for them to see me!

 

[dalvin]

Lily, another thought. If I remember correctly you said your mom likes puzzles but also said her hands aren't working very good now. Some of the puzzle book publishers have a web site that you can go to and work the puzzles on your computer. Think some of them are free