Dagmar
Forum Replies Created
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Glad we cleared that up! 😉
…everyone who doesn’t have ALS can breathe a sigh of relief! 😉
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When I was diagnosed in 2010, clinical trials required patients to live within 50 miles of a test site thus requiring patients to travel to the site for periodic evaluations. Most clinical trials were in large cities and far, far away from where I lived. So, for years I never had the opportunity to participate.
Now, good news! With the advent of allowing patients to use their smartphones to collect data, this hopefully will open enrollment to many more patients. And, speed up the discovery of a treatment, cure and prevention of ALS.
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It is too bad when medical professionals have such closed minds about patients and ALS. Perhaps palliative care is appropriate for some patients from the day of their diagnosis through the course of their disease. But every patient is different and deserves individual treatment.
Times change. I don’t believe that cancer or heart disease patients would tolerate this attitude from their medical team – – but it was the norm decades ago. In truth, life itself is a terminal condition! But we don’t conduct our lives as such.
Let’s continue supporting each other and change the perspective – – we are the new ALS patient 🙂
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Hello Diana,
I checked with Bionews (who publishes ALS News Today and this ALS Forum) and was advised that naming clinics and hospitals are fine, but we should avoid naming specific doctors and specialists, unless said doctors give permission.
Which makes sense, because this is a public forum. Names of specific doctors and specialist can be shared in private messages among members.
We can discuss the recommendations made by doctors and clinic staff, but members should remember that this is information only and not medical advice.
In general we shouldn’t put any clinics down… but we should share ideas, suggestions (like my questions for the clinic staff) that will in the end help everyone to get the best out of their medical visits.
🙂
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Thank you Diana, for your in-depth description of your recent ALS Clinic experience! I’m sure this will help other pALS by providing a comparison to their clinics, as well as give our overseas Forum members a better understanding of how ALS Clinics operate in the US.
Bravo for asking all your questions!
And what a wind-fall to be included in the sublingual Riluzole study and receive Riluzole at no cost!
I have my ALS Clinic visit at the end of the month and will share my experiences here – – and I invite our Forum members to do the same 🙂 so we can learn from & support each other!
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This is another validation that attending an ALS Clinic is beneficial for pALS! Although I regularly read comments from pALS that their ALS Clinic “doesn’t do anything,” I’ve found that framing my own expectations results in a better experience.
Yes, these clinics measure our decline, and, make recommendations for accommodation based on that decline. But… among the clinic staff is a wealth of information – – if only pALS would speak up and ask. And it is also important to let staff know that your expectations are to maintain your health and abilities for as long as possible. I wrote a helpful column on this very topic: The One Thing to Always Bring to the ALS Clinic.
As a side note, within this news article is reference to a nutritional study showing that a high-carbohydrate diet also proved to extend survival. Combined with the recent findings about how increasing dietary glucose supports our muscle function – – we are adding more pieces to the puzzle of how to live longer with ALS.
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Hello Diana,
Yay, that you begin your day with the OS RESETS! I do too – – and they are such a good wake-up habit for me, I couldn’t start my days now without doing them ?
1) Sitting and getting up is SO important to retain. Yes, it’s a shock to suddenly notice sit/stand is becoming difficult to do – – I’m glad you are including it in your movement priorities. From what you describe, you are doing them correctly. We all have to adjust for our bodies state of strength; you start out easy and build up. Even “air” squats: never hitting the chair are an OK start! (here’s a link to my air squat column, in case other members want to join in! https://alsnewstoday.com/2019/03/12/squats-als-leg-strength-exercise/ )
Rollator in front, chair in back – – excellent! Holding the handles is fine – – your body will tell you when it’s strong enough to hold hands out in front. But holding them doesn’t affect your leg muscles.
I suggest you do the 3-4, several times a day (I do morning, late morning, early afternoon, before dinner) and try to increase to slowly increase the repetitions over days, or weeks, until you’re doing 10 each time. At this point, you should notice better balance, walking and sitting!
For me, getting up smoothly is still the challenge. But I now practice: “sit-pause-stand” rather than a squat-and-up.
2) For back strength, I suggest Planks – downward facing, up facing and side planks. OS rocking is good too, and if your spine (I remember you had surgery) can tolerate it, this movement from OS is also very good. https://youtu.be/_tDqY29b5RM
3) My rebounder is not doing anything special for my mobility other than – – I do it regularly. Rebounding, treadmill, recumbent bike all provide good full body exercise/movement and good cardio. The magic is finding something you like and will do on a regular basis. I like rebounding (I grew up on trampolines and enjoy the movement) some people don’t like bouncing up and down, but love cycling. So, do that! There have been some studies showing rebounding as helping ankle flexibility and strength… but the same can be said for using a stationary bike (if you have moving foot pedals).
The key is to engage whole body movement, increase breath-rate and heart-rate… and do it regularly ? Hope this answered your questions 🙂
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Susan, thank you so much for filling in “the rest of the story.” We all have so much history and ins-and-outs, that it hard to tell it all in one post. So, thank you for sharing! Now, I understand much better.
You certainly are providing excellent hands-on care and coordination of care – – despite the challenges of location, limited access, and more… along with a pALS whose mental and physical health brings daily challenges as well. And you certainly are allowed to write in frustration – – this forum is for members to share, listen and support each other. 🙂
I hope one or two of our forum members can offer you insight or share their own experiences with FTD (Frontotemporal dementia)…. perhaps you could also post your question in the sub-forum “A Forum for ALS Caregivers” to elicit some helpful responses in that arena? Thank you for the aloha! 🙂 Dagmar
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Hello Susan,
Let me offer a response to your question – – from the perspective of a fellow ALS patient (and only 2 years older than your friend).
You are to be commended for taking on the responsibility to be care coordinator for your friend. She is lucky to have you doing this and I am sure appreciates you immensely.
Anxiety? Depression? Remember, that she was a fully functioning, independent person with hopes and dreams who, in the span of 5 short years, quickly progressed to losing the ability to move or control her arms and legs. She lost the ability to enjoy eating food and the social rituals associated with meals. She now depends on a machine to assist with breathing, and, can no longer communicate effectively. For the majority of ALS patients, throughout the progression of our symptoms, we retain the ability to think clearly, observe the world around us, have opinions, and – feel the emotions of anger, fear and frustration. Having an “irrational fear” is really in my opinion, a rational response to the situation of living with ALS.
Question: Have you explored alternative communication devices other than a white board? Surely, the staff at your ALS Clinic have discussed an “eye gaze” device? https://www.youtube.com/watch?v=Y7_f-pR8SBY These are routinely paid for by Medicare. (Two of the ALS News Today columnists write their articles using an eye gaze device)
I sense in the description of your situation some impatience on your part. That your friend is not, maybe, going along with the plan or, passively cooperating with the care team. Rather than self-diagnosing her reactions as FTD and instructing the care team to act accordingly – – with ensuing medication. You should have your friend evaluated by her neurologist and you should have this discussion with the ALS Clinic team.
Finding a way for her to fully communicate her feelings and opinions will help. “Big picture thinking” also changes for ALS patients: we now think in terms of months, weeks and days. Our world is smaller and yes, we fear the future. Do you have a spiritual counselor who can meet with her? Someone who has Hospice training and can help you both with this issue?
Again, I applaud your care and compassion for your friend… She is a human being, feeling normal human emotions, caused by having to live in an “un-normal” body. I send hugs to you both!
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Susan, would you mind sharing what kind of/or what brand of voice amplifier you use? Thank you!
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Thank you John! This is helpful information for our forum members!
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John, I am amazed at the high incidence of ALS within your particular community/area! Either the local doctors are getting better at diagnosing, they are mis-diagnosing other conditions as being ALS, or, there is a valid reason why someone should investigate possible exposure or other sources of the high localized incidence.
In all of southwestern Arizona, there are probably 50 ALS patients; and most of us have moved here from other parts of the country. In my town of 30,000 – – I am the only one.
So, I fully understand why from your perspective, ALS is not rare at all! I wonder what the local ALS Assoc. Care Coordinator would say if you brought up the topic of the high incidence of ALS in your area?
On another but related note: I’ll bet the pALS diagnosed in your area were not all athletes, in the military or had a head injury – – as the current media likes to portray as possible causes of ALS. Makes one think, doesn’t it? 🙂
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Jean-Pierre, I cannot find any reference to your statement “On contrary, and equally surprising, a ‘beneficial’ cardiovascular profile, with a low body mass index, an athletic lifestyle, and low blood cholesterol levels, may increase the risk or worsen the prognosis [5][6] ” in the studies you provided. ??
I personally (and from what I have read and observed) that fit individuals are at a higher risk than the unfit. Many people are diagnosed with ALS who are unfit, overweight and/or generally inactive. The athletic folks simply stand out in media reports.
I believe being fit prior to ALS is an advantage; the patient has better muscle mass and cardiovascular health. But they are at risk emotionally – – feeling that their past health efforts were for naught, and, unwilling to accept a new normal.
The unfit ALS patient begins at a lower muscle mass and dedication to exercise; thus they atrophy quicker and feel helpless.
Maintaining fitness as a patient, I believe helps the body and reduces mental stress. Measuring body fat and muscle mass may be a motivational benchmark to maintain their fitness – – and could be an addition to the strength testing done at ALS Clinics.
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I’ve learned that I can no longer compete with crowds, noisy restaurants and lots of people talking at the same time. And that’s OK.
John, don’t give up! Be willing to speak slower; take your time to form the words. Breathe. I am happy to help with tips and ideas 🙂
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What I understand about stem cell therapy (other members feel free to chime in and correct me) is that the stem cells grow into generic neuron cells. These are put back into your body, and, these neurons “support” your existing neurons and motor-neurons ( or whatever you have left following onset of ALS). You are not getting new motor-neurons – – only a fresh supply of generic neurons.
So I wonder how this claims to slow progression (ie., loss of more motor-neurons)?
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Glen – – A couple of questions for you: What exactly are they promising the treatment will do? And who has “approved” it? How many times do you have to go back?
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It’s exciting folks – – so watch for further announcements!
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Diana – – How is the “recovery” going? Are you feeling better and back to pre-cruise energy? Hope so! 🙂
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One more drug/supplement to keep an eye on – – maybe holds potential? Or, maybe just good backstory drama that could be the next Netflix series… 😉
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Here is a nice, short, easy warm-up (or, in our case: a short exercise routine) from the ZHealth folks, that can be done standing or sitting in a chair:
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Diana, thank you so much for sharing – – your detail and heartfelt honesty will surely resonate with others and quite possibly be just what one of our members needs to read to help them understand their own feelings.
We all send a healing hug to you… and to each other.
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My “wish list” for all three of my suggested additions center on providing feedback and motivation for the patient. If everyone in the patient’s circle of care operate from the opinion simply assuming ALS patients will lose muscle strength & mass, become depressed and lose posture – – then the patient is on a sure course in that direction.
Yes, a bathroom scale can easily provide Bioelectrical Impedance Analysis (BIA); percent of lean muscle, body fat and water weight. I use mine for feedback that my exercises and nutrition & liquid intake are maintaining good health levels. If this same measurement were a part of routine medical visits: patients could be encouraged to exercise or continue passive ROM, increase healthy eating and maintain hydration. Patients are often encouraged to generally “gain weight” – – but excess body fat can stress the body’s organs – – giving specifics goals would be helpful. Just tracking degradation is not “medical care” in my book.
Same goes for depression and posture. Yes, excess sitting leads to weak muscles and poor posture – – but we can do things to slow down degradation in these areas. We should expect more education and motivation from our medical team (and change the perception of ALS).
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I incorporate all of the basic RESETS into my various routines throughout the day:
- Waking up, in bed: rolling, head nods, breathing
- Later on the floor: rocking, crawling, breathing
I like to experiment with the variations shown on their video site, but always do the basics. Yes, I too feel “normal” again after crawling! I walk better, my back is relaxed and posture improved! Although, I am still at baby crawling; I cannot yet muster the strength to crawl with knees lifted (leopard crawl).
Head nods and variations have served me well all these years:
- Lay on stomach, prop yourself up on elbows: chin to chest – lift chin up (repeat), chin to right shoulder – chin to left shoulder (repeat), chin leads head in large circle to right (repeat) – then left (repeat).
- Or while sitting; lean forward, place elbows on knees. Do the sequence described above.
I recommend signing up for their blog. Also on their site you can do a search “low back” or “upper back.”
Here is another resource I often use are the videos by Brad & Bob; two physical therapists who present easy to follow, good exercises – – with a unique, fun delivery! Here, they include 2 good exercises for the neck, along with 5 other essential movements: https://youtu.be/lETF5JRgEN8
Since this discussion stream is getting so long, I will start another topic on specific exercises 🙂
(and include suggestions for low-backs!)
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Jean-Pierre, your website is very interesting and I appreciate the explanation of laboratory tests and ranges.
The ALSFRS-R remains for me, a guide as to how to design my short-term and long-term lifestyle routines and regimens. My every 3-month lab screenings are concrete monitors of the effectiveness of those regimens.
What I wished ALS Clinics also measured or included?
- Lean muscle/body fat
- Depression index scale
- Posture
What additional tests/screens do our forum members think should be included in regular doctor/clinic visits?