Forum Replies Created
February 10, 2021 at 6:06 am #17711
for the moment, the most challenging part is when my husband feels depressed and deeply distressed because of how his life is shortend (even if like all of ALS patients, there is no end date known) and all what he will be missing when he doesn’t want to go yet. I feel powerless and would so much try to get the most out of the time we still have…
The advantage of being a self employed business coach, is that I can make up free all the time he needs now that he can’t drive anymore. I work from home (not just now with covid) so that makes me mostly always available. I feel because of the stress very limited “bandwith” for work. Doing what I have done the last 10 years, coaching, is a relief and energygiver. Having to do new things like learning all the online stuff asks so much more energy, which I not really have now.
how do I try to help myself:
– I try to take time out for myself when the weather is fine enough and go for a bike ride on my new e-bike, which I love
– talk with friends who are there for me. That works best when they reach out first. I find it difficult to start first.
– I also see a psychologist every 2 weeks.
– monthly ostheopathy therapist or shiatsu session
– write in my my diary
– we already looked into all the possible help tools so we know it doesn’t stop necessarily when his bodypart stops doing what needs to be done.
that is what I try to do now… we are almost 1 year into diagnosis and 20 months in to onset. His arms are more and more affected (right arm about useless, just the hand, but fingers also weaker every day) right arm gets worse too. Impact on eating, dressing, washing, no driving anymore, Voice gets worse…
For the moment we still manage without extra tools or external help.
February 10, 2021 at 5:21 am #17709
I can relate very much to what you feel.
– we always go with two to the apiontment, my husband, the patient, and me, his wife caretaker.
– I note down most of what is said
– we prepare our questions in advance
we are also changing neurologists now because there is no match between the doctor and us. every visit is a source of stress and fear for her reactions. she is very rational, gives little information if we don’t ask for, and if we ask for she will never take riscs or try something she is not 100% sure of. as if we have much to loose…. she doesn’t use the ALS FRS tool, pretended there is no tool to use, when I know it is used, so I fill it in myself from what I found on the internet.
but the most oimportant thing: she has little to no empathy and is not motivating us. it is only doom and gloom, as if we don’t have enough of that. So on our part it is not so much the medical side that is missing, we have EMG twice a year, clinical tests every NMRC meeting (about every 3-4 months). but as a human being we are totally left in the cold. and that takes a huge and unnecessary toll on our already limited reserves….
I wish you a all the best!
September 29, 2020 at 2:55 pm #16461
we have had a first diagnosis end of april, and a confirmation of ALS on september 4th. playtime for denial is now over. so time for things like
– finances: advice from the bank, need to add a personal account, now we have everything in our name which will be blocked by law the day he dies untill the notary gives it free again.
– group insurances: needed to change a group insurance that was only for “life” and not for “death” before the pension age, turned out very well after the right advice from a helpfull emlpoyee at a governement office and some weeks waiting, was very stressful when I found out though in the beginning.
– marriage contract needed to be updated because would have negative consequences and were helped by the notary.
– care contract: made up by the notary so I can be his guardian in case he can not act any more for signatures and money decisions
– we agree on euthanasia (which is possible in Belgium thank God for that) but is now too early to fill in the papers yet, but I do have the address and links what to do and our GP agreed to be 1 of the 2 doctors necessary.
– hospital insurance from his employer: got accepted as a patient in 1 out of 28 grave ilnesses that gives us the right to have also his ambulant care refunded (the part that is not paid by the health insurance) we seem to have the “Rolls Royce” of the market DKV.
– health insurance: God bless Belgium for our fantastic health system. doctors, MRI, CT’s, NMRC, ergo, fysio, logo are all paid for more than 80%. ex. Rilutek is €155 without insurance, €12 with. Was on special demand though, because expensive and special medication.
– invalidity agency: because this is a fast progressing illness we can be allowed a budget of 65k per year for his care “fast” (not waiting 3 years…if it ever comes, budget cuts…) by the governement. That demand is now in process and needs much time, that is why we started right away with it, now that we don’t need it yet.
– driving: we send in a demand for a checkup for his driving-skills to see what is still allowed or needs to change in the car (his legs are not affected (yet) only his arms and hands get weaker, and his face)
that is about what we started now. the health part on his wishes on resucitation etc, we haven’t done yet…but we are still at the beginning of our conscious journey with ALS
August 12, 2020 at 11:10 am #16106
hello, my husband (61) got diagnosed with a MND, probably ALS but not sure yet because atypival symptoms; nevertheless, symptoms are the same: weakening of muscles and losing power in arms, hands and face (variation on ALS is FOSMN facial onset and sensory motor neurone disease). We got the “diagnosis” on april 23, mid corona in Belgium, but knew it might go in the ALS direction from march 3. It is only since end of July we can say we have left the land of only grief and despair.
what helped us?
1. a good therapist for him, needed 2 before finding the right one (after 3 sessions you should be able to tell if you are at the right address, started in May so very soon after the diagnosis.
2. undoubtedly the little book and blogs of Dagmar “power woman”, which you can find on her blog https://alsandwellness.blogspot.com/2015/07/new-book-align-lengthen-strengthen-your.html
3. some books the therapist advised him such as “a Guide to the good life” by William Irvine and “Being Genuine” by Thomas D’Ansembourg. as his partner I read them too so we can discuss it and be on the same page in all ways. (skip chapter on the philiophie history 😉 with Irvine)
4. our love and partnership of 32 years
5. sharing it with other people that can be our “backstage” as he calls it. receiving their genuine support and love
6. sharing with our kids (26-28) as soon as we knew without making them our emotional caregivers. They are his children and have their grieve too. we all have our role in the system. Our Kids are not our parents.
7. accepting that this takes all space and time now: concentration and energy for other things is hardly possible. be mild for yourself.
8. staying actor instead of victim, don’t give away your own power and authority by doing only what the doctor says. find out how to make your life better even with the dagnosis. Dagmar’s blogs gave us great ideas on how to keep taking our life in our own hands and not just follow the pace of the doctor.
9. decide who will inform him/herself, be a go-between for your partner and the information sources, because reading on the disease means you can accept it already. my husband doens’t read on the disease. I do that for him and he listens :).
10. read ALS news today, a magnificent website, avoid the panic and misery sites. go for the “actor”-sites, not the “victim” complaining sites as my sister in law and neurologists calls them
that is what we have found for the moment as helping…
be strong there and hang in….
July 31, 2020 at 10:22 am #16003
after our last visit on Monday we decided to stop the medication all together. 1 pill is nu use according to the doctor. And if his quality of life diminishes already that much now taking it, when the symptoms are still kind of bearable, it is not worth it. every good moment is to be cherished.
July 31, 2020 at 10:19 am #16002
here in Belgium Covid is living its second wave. We just continue going to the neurologist and the physio sessions that are held in the hospital. Washing hands regularly and masked we just go for it.
July 22, 2020 at 10:53 am #15931
my husband had a daily exercise program from his physiotherapist, thinking he had a viral shoulder problem. it turned out to be a MND. He started physio in the hospital twice a week and stopped the daily exercises, labeled as redundant. When I look back now, it seems that in these 6 weeks the speed of his loss of mussle power in his arms go together with the stop of the daily exercises. So we started again this week with the daily regime. Hopefully this helps not sliding away as fast as it seems to happen now. Monday we have a new EMG, the 2nd after we discovered on March 3 there was an issue. He was diagnosed with MND (not clear yet if it is ALS, FOSMN or Man in the Barrel)end of april.
July 22, 2020 at 8:48 am #15929
we are diagnosed with a motorneurone disease, possibly ALS (new EMG on Monday). My husband started taking it early June, no problems the first weeks, then very tired and stomach upset and no hunger. And we thought depressed as well. So he stopped a couple of days, the depression seemed to go but only 2 or 3 days (he is still much in denial), he is much less tired and eats well again. Because of the benefit of the medication he started again taking it only in the evening and that goes well. Thinking about moving up to the full dosis again now.