Susana Rave

I was diagnosed 3 years ago and right away was prescribed Riluzole.  Last Saturday I started Radicava ORS and have tolerated it well so far.  According to the pharmacist who I spoke with prior to taking the Radicava said the side effects could be headaches, fatigue and bruising easily.  I have not experienced any of these so far but I am only on…[Read more]

Rick thank you for your sharing your exceptional talent with us. May you rest in peace dear friend.

My biggest adjustment in living with this disease is losing my independence and having to rely on my husband to do the simplest things like making the bed.  I was diagnosed in October 2019 and while I have a slow progressive ALS, I am still walking albeit with a walker at lease I can still move around. I can still take care of myself, i.e. shower…[Read more]

I am a financial analyst and have continued working since my diagnosis on October of 2019 at age 60.  However, after 3 years with ALS I am progressively weakening, especially hands, so this year I am considering retirement.  I love my job but I think its time to change careers.

Susana

Hello all,

Thank you for your posts on the home remodels.  I have a question to anyone living in the Los Angeles area as to what company you used, specifically for the bathroom remodels.  My husband and I live in a two story home so aside from the bathroom remodel to the bathroom on the first floor we are also looking at installing a chair l…[Read more]

Dagmar, thank you for sharing this information.  I wear the Billy’s shoes and they are comfortable and easy to slip on.  They have zippers on the outside of the shoe which allows the foot to be placed effortlessly inside the shoe bed and once the foot is in you zip the shoes and you’re ready to go.

They work great with the AFOs!

Mark,
Looking forward to reading more of your posts and visiting your website when it’s available!!  We would all benefit from the therapy/exercises.

Susana

Hi Marianne,

I also have bilateral drop foot and the AFOs are a must for me. They provide stability and allow me to walk (heel toe) and without tripping.  My PT recommmended the titanium type which are light and comfortable to wear.  I also use the rollater when walking long distances.   I love them.  Fortunately, my medical insurance cove…[Read more]

Hi Russell, I am sorry you are going through this but all of us on this thread have been there.  I echo what the rest of the participants said; try to relax and don’t create more anxiety with the what ifs.  Allow the doctors to properly diagnose.  The best advise is to calm down and don’t let your thoughts get out of control.  When I was dia…[Read more]

Marianne,

Thank you for your post.  I took melatonin last night and that helped me sleep through the night.  I spoke with my MD and he recommended ibuprofen for the pain as needed.  I hope for better night sleep in 2021.

Thanks again and have a good and restful 2021!

Good morning

I have been diagnosed since September 2019 and my symptoms have been slow progressive.  Until recently I have never had issues sleeping. The last 6 months I toss and turn every 2 -3 hrs  because staying in one position causes lower back pain if I am on my back, or pain to my hips if I ‘m on my side.  All the tossing and turning re…[Read more]

I thank you sooo much, Dagmar!

Hi Dagmar,

Thank you for your sharing.  Yes, please let me know the toe exercises.  I don’t want to go through surgery so anything you can suggest is greatly appreciated!

At the last clinic visit the physical therapist recommended that I get AFOs to provide support due to weak leg muscles and drop foot on the left foot.  These AFOs are very sleek and very sturdy.  I think they’re made of titanium and they fit well in any of my sports shoes.

I have another issue that I was wondering if anyone in the ALS community i…[Read more]

Hi Kathy,

I was diagnosed earlier this year and I am still driving, one of the few pleasures I can still participate in.  I have not had any notices from the DMV (thank goodness!)  I am also still working so I drive to work 3 days a week.

Good luck.

Susana

My experience was very similar. I waited 4 weeks for the EMG appintment and a few minutes after the neurologist read the EMG findings he said that I have neuromuscular disease.  Not really knowing what this meant I asked do you mean ALS?  Unempathetically, he said yes.  He did not provide any information as to what this really meant and being ov…[Read more]

My family and I are planning a cruise to Alaska in June.  Any travel tips would be greatly appreciated.

Thank you.

Hello,

I am still working full time as an analyst and I am fortunate I have a 6 mile (round trip) to work.  I am still driving short distances but getting nervous about driving long distances. Getting ready in the morning is becoming increasingly difficult so I am contemplating on requesting a modified work schedule to start work an hour…[Read more]

Dagmar, I exercise (squats, walk and ride a stationary bike) and i truly hope this activity will help keep my muscles strong.  However, i am still struggling with keeping a positive attitude, in spite of my very positive and happy disposition.  I suppose the fact that I was recently diagnosed (9/27/19) is the reason for the angry feelings i am d…[Read more]

I began having fasciculations in my thighs about a year ago and did not know why.  I mentioned it to my general practice doctor and she paid no attention to what I described to her.  I knew this was new and different for me but because it was intermittent I did not consider this symptom very important.  Fast forward to Sept 2019, I saw the ne…[Read more]