Susana Rave
Forum Replies Created
-
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 day 5. Hopefully, this medication slows my progression further. Currently, I walk with a walker, and can still take care of myself – showering, dressing, light cooking, although my hands a weakening.
I am also taking 1000mg of Tudca, one of the elements in AMX0035.
-
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 but I miss not being able to do things quickly and that is so frustrating! I am getting a stairlift installed so I’ll be able to go upstairs without too much effort.
-
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 lift. Any recommendations are greatly appreciated.
Thank you.
Susana Rave
-
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 covered 90% of the cost so my out of pocket was about $300. It was totally worth it.
When you get them you’ll be so happy you did. : )
Susana
-
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 diagnosed 3 years ago I immediately searched the internet and that resulted in depression and really bad thoughts. As it turns out I have the very slow varient. I am still working, driving and walking (albeit with a walker) but nonetheless walking. Praying for you!
-
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 results in an unrestful night. 6 months ago we bought a new (hybrid) mattress which turned out to be too firm so we replaced it with medium firm hybrid. This mattress also is not helping. Is anyone having similar issues? If so, any recommendations.
Thank you,
Susana
-
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 is experiencing. My toes on my left foot (with foot drop) have started curling similar to hammer toes. I consulted with the foot doctor and he said this issue has to do with the weak foot muscles and that surgery would relieve the pain. the surgery would involve cutting the tendons so they don’t pull the toes under. If anyone has this issue with toes curling and/or has had toe surgery, please share your experience. I am considering having the toe surgery to relieve the pain.  I have to tape my toes to straighten them before putting on my shoes – everyday! : (
-
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 overwhelmed (frankly shocked) by the news I began to weep. My husband and I left the office and I quickly googled ALS and was horrified to learn how quickly it could progress. I was so depressed thinking I only had 2-3 years left to live. Six months later I sought a second opinion from Dr. Rosenfeld at Loma Linda Univ. Hospital. He confirmed my diagnosis but qualified it by saying “it is a form of neuromuscular disease and a slow progressive type”. He also said i don’t have the textbook ALS. He delivered this diagnosis in an empathetic manner and he said I that if I wanted I could participate in clinical trials. I count my blessings that what I have is the slow progressive type of neuromuscular disease.
The team of specialists (PT, OT, Respiratory, etc.) are excellent and I will continue to drive 2 hrs to see Dr. Rosenfeld and attend Loma Linda’s clinic.
-
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 later. I have not discussed my illness with my boss or HR just yet. I want to continue working because my work occupies my brain and i forget the illness. I take a nap at lunch and that helps regain my energy for the rest of the day.
Susana
-
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 dealing with. Fortunately, i don’t have these sad episodes/feelings frequently; nonetheless it’s a struggle to deal with. I appreciate the forum as it provides much support.  Thank you.
-
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 neurologist at USC Keck Medical and I suspect she knew that this would be symptomatic of ALS. It was at that time she ordered comprehensive blood tests and the EMG. The results of these tests confirmed her suspicion that my symptoms were consistent with ALS
I continue to have fasciculations intermittently throughout the day. I take homeopathic nerve calm tabs and that seems to calm them.