Wife Diagnosed

[AJ7979]

Hi all,

I have been reading for a couple of months now just to find information why my wife would not have ALS. After symptoms starting sept21 with her left hand and developing since we have gone through a huge medical search process. In the end diagnosed by ALS a month ago. I am from the Netherlands we were diagnosed in Utrecht.

A heavy slap in the face for her and all of us. 41y old, we have 3 kids ranging 5 to 14 years. First weeks were so heavy. Not any light and very depressed. Now it is slowly getting better and we talk about things in future, longer then 1 day ahead. The ALS is mostly efecting the limbs so walking is very bad, only in the house. Also daily inhouse jobs are reduced to almost zero. We got lots of help from friends and family.

She is actively working on other eat patrons. No gluten, lots of vitamins, etc. Hoping that the energy will get some better since this is very very low especially in morning after a night of sleep. Just wondering if anyone recognise something and could advice based on experience etc.

O

 

[lgelb]

I'm very sorry to hear this news. Not sure what you mean by "other eat patrons?" Eating patterns?

If her walking is bad, are you organizing a cane or walker in the short term, a wheelchair in the not-too-distant future?

If she did not have a gluten sensitivity before, there really is no reason to restrict it now, unless it is making her feel better in some way. When you say her energy is worse in the morning, I wonder about her breathing -- has that been tested?

Also, if by "vitamins," you mean that she is taking supplements, those take energy to metabolize, and ALS taxes the metabolism, so that can do more harm than good. If she is not replacing the nutrition in gluten and whatever else she's eating less of, that is another possible issue.

So all in all, I'd advise making sure she's getting enough "real food" and the nutrients that go with it, which are generally better absorbed in food than pills. Hydration is also very important and even mild dehydration can affect energy. And of course we are less aware of our thirst when asleep.

We will support you both however we can.

Best,
Laurie

 

[Mary2]

So sorry to learn your wife has been diagnosed with ALS. My PALS felt much better once he started on BIPAP. My PALS was also put on Riluzole which seemed to help as well. My PALS went through all the devices, cane, walker, scooter, basic electric wheel chair, and then a very fancy electric wheel chair where the seat tilts to prevent pressure sores. What wonderful friends and family you have!