Living alone father diagnosed - need support

[Alsvinsk]

My almost 73 father was diagnosed with ALS back in November, after a first neurological check up in September, prompted by a progressive loss of dexterity and muscle in both hands. The electromyography prescribed in September already showed signs of LMN damage compatible with a motor neurone disease. In a short lapse of time we understood that the illness had already affected his legs and in particular the right one, something that was masked for a while by the fact that he has hip arthrosis and was scheduled for a replacement in September, which we ended up postponing, probably forever.

As it seems to be happening in a lot of ALS cases, he went from a very healthy, active and sport-loving person (the first symptoms were probably masked by the hip pain, but do not seem to date much farther back than March 2021) to a very weak person struggling with everyday life. In all of this he lives alone, with my mother working abroad and brother and sister living independently in the same city and having no wish whatsoever to move in with him, due to his very difficult character. My husband and I live at a 6h distance and I am trying to be there at least once every 2 weekends for some days in a row.

With some adjustments to his clothes and a couple tools in the kitchen (see jar opener) at the moment he can still get dressed, wash himself and feed himself if needed (me and my syster are cooking most of his food for him). He is though very slow, although he does not often complain of "tiredness". I am worrying about over exertion as I read here that people should avoid it, but as far as I understand my father, he likes to be active and while he never ever liked domestic activities he is enjoying his physiotherapy sessions (twice a week) and spontaneously exercises with a indoor bike and says that he feels better, not worse, afterward.

We are in Italy and I don't know if this is making a huge difference, but for one thing we cannot get Radicava as it was not approved: he is treated with Riluzole and is taking L-acetilcarnitin and palmitoylethanolamide (Normast) as supplements, as suggested by the neurologist following us.

On the other hand, while I read people in the blog giving very specific definitions of their diseases, specifying a bulbar versus limbic onset (here it is clearly the second, as my father can still speak clearly and has no trouble breathing yet) a pre-dominance of lower motor neuron vs upper motor neurone (or vice versa), both experts we consulted with are not really giving any clear definition, one having diagnosed ALS and the other a "motor neurone disease". I don't even know if it matters a lot, but for sure the way doctors are handling the topic at the moment is very cautious, possibly because they do not want to psychologically hurt my father. For example they won't talk of progression, they say that they can only monitor the past, but in this way they give him hopes that he could stabilize or even recover, while I believe that there are statistics that could help having a better perspective of what comes ahead.

The problem is that he never accepted disability in others before and therefore he is now mainly profoundly ashamed of being in this situation. He therefore refuses a cane and I am guessing that putting him on a wheelchair will prove incredibly difficult. I am trying to show him in how many ways he would better enjoy his days with these tools to get him used to the idea, but at the moment there was no real effect. As an effect of the shame and the weakness he is not going out and remains at home for hours, without visits from friends (very few friends and not used to meet frequently) or family (estranged or abroad).

We hired a help to live with him, which should hopefully be a solution to lift him at least of domestic cares and be there in case of emergencies and for all the small non-intellectual tasks. His affairs are not set and while he wants to do it he is extremely difficult to talk with with respect to these matters. All in all, I believe I would need some psychological help to deal with the whole thing and a outlet where I can discuss these matters with people that have more knowledge.

So many questions! I will try to jot down some and maybe someone can help me or direct me to a correct thread and once I can open more threads I will do it:
diet, supplements (in the hope he stays like now a bit longer!), tools

 

[Alsvinsk]

New to the forum, my message got truncated. It continues like this:

• Diet: starting the whole thing at the lower end of a healthy weight he was prescribed a protein and calories rich diet and currently he eats 5oz of meat (mostly red to his tastes)/6 oz of fish or other alternatives twice a day, lots of green vegetables (a staple even before the diagnosis) and pasta/bread/potatoes twice a day and put on some weight mainly around his belly, were the abdominal muscles are very relaxed. Is there something working better, should we be also careful of weight gain, not only loss?
• Muscle loss and areas: one of the first areas that really upset him was a weakness in the core, which I did not read a lot about in most of the reports of ALS early symptoms and which also the neurologists visiting him appear to dismiss a bit versus the hand and foot symptoms. I believe that this core weakness is affecting him a lot: when he carries even small things he folds down as he can't re-balance using his arms. I wonder if this weakness is a sign that he will soon develop also respiratory symptoms. He also shows small difficulties in digesting (small burps), which he did not have before, but I am wondering whether they are not also connected with the richer diet.
• Progression: is this slow, is this fast? Shall we expect soon problems with talking? Breathing? How soon? As of now my father has almost full paralysis of his right foot and extremely reduced movements in his left hand, so there has been a worsening since September. My mother should come back from abroad in September 2022: I do not want her to suffer the whole burden of this situation, but of course I would be relieved by her return. Anyway we will probably need a more specialized help somewhere down the line, but the cost of it here seems really difficult to bear and the association for ALS in Italy was just able to tell my mother to prepare because we will need a lot of money and could not even help about the bureaucratic steps to get what small support we could get from the medical system.
• Urinary incontinence and how to deal with it: maybe some men in the forum can help my father has mild incontinence, meaning that he needs to go about twice the times a normal person. The problem is that each time it is a struggle and he ends up spilling around a bit. We tried to suggest sitting down, but apparently he says he would spill as well. Are there ways to cope with this? Bathroom remodels that could help? Tools?

I understand this is an extremely long post and apologize and thank all the community for any wise advice and support.

 

[affected]

So sorry to see you here, and for your dad's diagnosis.
To your questions:
1. He should try not to lose weight - but he should eat whatever he enjoys, and try to take in lots of calories. Of course he doesn't want to gain huge amounts of weight but ALS tends to eat up calories very fast, so just watch his weight.

2-3 The only predictable thing about ALS is how unpredictable it is. We can't tell you if he will be fast or slow progression, and even people with fast progression can suddenly plateau for months or even years for no reason we can pin.
With that is the areas it progresses to, there are typical lines of progression for some types of onset, but no way to tell now if he will follow typical lines or not. If he started with core area, then yes breathing could be affected early as you suspect.

4. there are condom catheters that can be applied, urinal bottles with a no spill function, and finally, as a last resort catheterisation. I'll let the men answer to any other strategies they may know of that I don't

You have come to the right place for asking questions. You will even get different, seemingly conflicting responses here, because what works for one doesn't always work for another. I suggest you watch the responses here, then go through them and see what you feel works for you and your father and try those.

I'm glad you have hired someone to be with him - that must take a huge weight off your mind.

 

[lgelb]

Very sorry about your father. I would work with his doctors to get the truth to him that MND is progressive and generally fatal, and that he will face choices about equipment to support mobility, nutrition, and breathing at some point. It does him no service to plan or think otherwise. The choices are still his, and that is the overriding message.

My husband's core was affected first. Whether his breathing is affected soon or later depends on the order in which muscles become weak.

As to diet, while it's true that he should maintain weight, even with a belly, ALS is a disease of metabolism in part so it's best to focus on "real food," as it sounds like he is doing. Healthy fats like olive oil and avocado are all to the good, along with meat, fish, eggs and whatever dairy he tolerates as proteins. Over time, swallowing may well become more difficult and he will want to avoid kernels, seeds, skins, nuts, and raw greens.

It is a shame that he does not want to go out while it is easier. Is there a friend or family member who could accompany him somewhere he likes, insisting on his using a cane or walker for their own peace of mind, and express their happiness that he is helping himself avoid falls, which cause much more disability in a shorter time?

We will support you however we can. There are a number of Facebook groups, etc. as well.

Best,
Laurie

 

[Alsvinsk]

Thank you so much to both affected and Laurie for answering and sharing your experience with me! I have a block on posts being new in the forum, which explains the delay in answering. So the diet is probably fine he eats, a lot, he fortunately likes it very much and continues to have a strong appetite and to enjoy the process. Let's hope for the best when this becomes more difficult for him. The problem is indeed company, as my brother and sister, who live close by, are not much inclined in going places with him and the few friends he has do not appear to think about the possibility that he might enjoy some more company. This is also all about how you build your life before: living in a big city, with a somewhat big family (until kids leave home to build their own lives) and some personal hobbies and things to do (alone) to fill up the time, someone might tend to forget the necessity of building up a net of friendships with whom to share passions, until it is late to build it...