No Title

Linda Lennon posted an update 3 months ago

Any information on family restrooms while traveling. I need help getting up as limb onset has gotten worse and traveling with my husband. Also any suggestions.
Linda Lennon replied to the topic Modifying your Home in the forum Living With ALS 3 months, 1 week ago

I have an additional question, I have limb onset and getting more difficult especially when traveling on the road or using public restrooms with out family rest room. I have only my husband to help so how do you handle using the commode when you are no longer able to lift yourself up.
Linda Lennon replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 5 months, 1 week ago

I started the cytokines trial trading to arizona, too early to say if there is positive effects minimal side effects. This drug is to help with muscle strength. We just have to keep on trying.
- Amanda replied 5 months ago
  
  Hello Linda,
  I would like to personally welcome you to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!
  
  We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with A…[Read more]
Linda Lennon replied to the topic Stem Cell therapy for ALS in the forum Using our Forums 8 months, 1 week ago

Mayo clinic is offering one but you need to travel to the Minnesota location
Linda Lennon replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 11 months ago

In addition to some of the supplements mentioned by others I’m using red light therapy my research indicated it helps mitochondria the cells power house, not sure if its helping.
Linda Lennon posted a new activity comment 11 months ago

Thanks, I do toning exercises and stretches but when you get up at night and first thing in morning its so difficult to walk to rest room. I guess I just have to struggle thur these times. I would be glad to know the ones you do I’m always open to add more and learn other options.

View Conversation
- Dagmar Munn replied 11 months ago
  
  I hear ya! I am so stiff in the AM. I began with a 5 min. stretch while lying in bed (knee pulls, leg stretch, body twists, rolling over, etc) over 11 years this routine has morphed into a full 30-min. When I finally stand and walk to the bathroom, I feel more coordinated, relaxed and… if the rest of the day falls apart, at least I’ve done some…[Read more]
- Dagmar Munn replied 11 months ago
  
  Oh, and I don’t get up in the middle of the night. Too much risk of falling. Right away during my 1st year of ALS, I “retrained” my bladder. It’s a process of drinking adequate liquids during the day, but towards evening reduce liquids. I don’t drink anything after 7PM. It took about a week to do, but I’ve been sleeping a solid 9 hours for 11…[Read more]
Linda Lennon posted an update 11 months ago

I’m having alot of difficulty with mobility and leg stiffness does anyone have suggestions that might help?
- Dagmar Munn replied 11 months ago
  
  Hi Linda, I have found that range of motion movements and gentle stretching helped me keep my legs from feeling stiff. And I am able to keep the muscle tone as well. On days when I miss doing my ROM sessions, I end up feeling stiffer and move with less ease.
  
  I’ve written a lot in my blog about these types of gentle movements. Let me know if you…[Read more]
  - Linda Lennon replied 11 months ago
    
    Thanks, I do toning exercises and stretches but when you get up at night and first thing in morning its so difficult to walk to rest room. I guess I just have to struggle thur these times. I would be glad to know the ones you do I’m always open to add more and learn other options.
    - Dagmar Munn replied 11 months ago
      
      I hear ya! I am so stiff in the AM. I began with a 5 min. stretch while lying in bed (knee pulls, leg stretch, body twists, rolling over, etc) over 11 years this routine has morphed into a full 30-min. When I finally stand and walk to the bathroom, I feel more coordinated, relaxed and… if the rest of the day falls apart, at least I’ve done some…[Read more]
    - Dagmar Munn replied 11 months ago
      
      Oh, and I don’t get up in the middle of the night. Too much risk of falling. Right away during my 1st year of ALS, I “retrained” my bladder. It’s a process of drinking adequate liquids during the day, but towards evening reduce liquids. I don’t drink anything after 7PM. It took about a week to do, but I’ve been sleeping a solid 9 hours for 11…[Read more]
Linda Lennon became a registered member 11 months ago
- Dagmar Munn replied 11 months ago
  
  Hello Linda,
  
  Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
  
  If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
- Amanda replied 11 months ago
  
  Hello Linda, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]