Tagged: cALS, Caregiving advice, fALS, Forum topics, living with ALS, pALS, Support Groups
- This topic has 11 replies, 7 voices, and was last updated 2 years, 7 months ago by Dagmar Munn.
July 13, 2020 at 11:56 am #15832
Last week, 13 new members joined our forum (again, welcome!), which brings us close to having 900 members! Just as each person has a different journey with ALS, we recognize each of our members has different motivations for joining this forum. Have we met your expectations? Do you have any feedback about ways we might be able to improve the experience for you? What types of conversations and questions do you value the most?
July 14, 2020 at 8:42 pm #15867AmandaKeymaster
We would love to know what you think about the ALS forums. What do you find helpful and what is not? We value each of the community members and we want to make sure that we are providing you with the information and resources that you need.
July 14, 2020 at 9:48 pm #15869Anonymous
In general, I think ALS News Today is very good and that is what led me here. I tried sometime ago, another forum which I didn’t like.
I think the range of topics is good and this seems to be a friendly place to share ideas and information. I don’ have any concerns about this forum, and I can’t think of anything worth adding or changing. It’s good.
July 15, 2020 at 11:30 am #15874
Thank you for sharing your thoughts, Walter! We appreciate your feedback 🙂
July 15, 2020 at 11:34 pm #15878Danielle UskovicParticipant
Like Walter, the news site is what led me here.
I’m new to forums and the types of conversations being held.
I like the FB group forums but it can get very noisy due to the amount of people on there. You can however search for answers very quickly without having to post. It can be a little overwhelming with the information and very sad with some of the content. Sometimes even depressing for someone like me, because I’m new to my diagnosis and can see what lays ahead. It’s heartbreaking.
The forum here, however is more educational and positive, and I’ve personally found Dagmar’s experiences and knowledge very helpful. I’m much more proactive with my health since reading her blog and advice.
I’ve also met some fantastic people through this forum (we talk regularly) which is a wonderful bonus!
What could be done differently?
Encourage more pALS to write about what they are doing day to day. What are their experiences, what has helped them, what are they doing to stay positive or what are they doing to try to slow their progression, how do they support their cals, what has been the best advice given to them, etc
July 16, 2020 at 12:13 pm #15881
Danielle, thank you for adding your feedback and suggestions! I’m pleased to read that you find our forum educational and positive – – and not negative and noisy like some FB groups.
Good too, that you’ve met and made online friends here 🙂
Your suggestions are great… and Amanda and I will surely follow-up by presenting those as future topics for our members to discuss.
July 16, 2020 at 5:34 pm #15892Suzanne AkermanParticipant
To do as Danielle suggested to get pALS to write about day to day life:
Create a page, like an interactive blog, with a link near each member’s forum photograph/name, where all can read what the pALS has written. It would be up to each pALS to create content, all could reply and interact when desired.
July 21, 2020 at 10:31 pm #15926AmandaKeymaster
Thank you so much for your feedback! We are always open to new ideas and ways that we can better serve our online community.
July 23, 2020 at 7:16 pm #15938Allen LewisParticipant
Well, yes, I have some feedback. I’m having trouble navigating your site and forums, undoubtedly to my lack of dexterity and technical knowhow. I just today read a very interesting article by Rick Jobus which touched in part on the progression of his symptoms. And I am keenly interested in the time line he experienced, eg-occasional slurring of speech to unintelligble babbling. How much time? Days? Weeks? Months? From unassisted limping to cane to walker to wheel chair to hospital bed etc. How much time? My own symptoms now consist of very noticeable slurring and an abundance of saliva, but no noticeable muscular impediment. No problem walking, driving, etc. But I have no illusions about what’s ahead. I would just like to get some idea how much time I have in each phase. When I pose these questions at the end of his article where it says “ADD COMMENT” nothing seems to happen. What am I doing wrong?
July 24, 2020 at 5:19 pm #15944
Hello Allen – – I’m sorry you had problems with this site… I looked into your question and can explain what happened.
The news articles & patient columns area where you read Rick’s 7/23 column is separate from this forum. Readers like yourself can leave comments at the end of each column and – – each writer is in charge of screening-approving-answering comments made to their published articles. I can see your comment in the “holding area” but Rick has not yet hit the “approve” key and replied to your questions. Unfortunately, some writers take more time than others with this process. So have patience 🙂
On a related note – – you asked, “I would just like to get some idea how much time I have in each phase,” which is the million-dollar question that every ALS patient asks. 😉 The disease affects each of us differently and our health, age, DNA, etc. all factor in as well. For example, Rick and I have had ALS for about the same length of time (10 yrs) – – his, has progressed faster. I’m still walking with a rollator, exercising, speaking with some difficulty, and still eating normal food. The challenge for us all is to find the daily life routine that works for our body – – and strive to slow progression while maintaining a quality life.
I invite you to explore the many topics and discussions by our members in this forum. You’ll find a wealth of helpful information.
July 28, 2020 at 5:04 pm #15973Ann ThomsonParticipant
I love this site. As a Wife if a Pals I need so much advice for caregivers. I find myself always watching my husband and asking him if he’s ok. I don’t want him getting aggravated with me. My heart breaks for him and all that have this horrible disease.
I wish I could get him on this forum. Jim would love it. He’s always been a talker but the ALS has attached his speech and now he hardly talks.
July 28, 2020 at 7:28 pm #15975
Thank you Ann! And let your husband know that he doesn’t have to talk to us – – only type 😉 He is welcome to join 🙂
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