Nutrition is critical. As you know, I’m sure, Dysphagia, which is initially mainly for solid and dry foods, progresses slowly and eventually even swallowing fluids, including saliva, may become a problem. If dysphagia is severe there is a danger of aspiration (food, drink or saliva “going down the wrong way” - into the chest rather than stomach) which greatly increases the risk of a chest infection. After many years the patient may become aware of limb weakness, first around the shoulders and later around the hips. This is usually relatively mild but can occasionally be severe and disabling, many years after the first onset of symptoms. Facial weakness may develop, and be commented upon by the specialist, but rarely causes any particular problems. Life expectancy is little, if at all, altered.
There are some new treatments (or old depending on how long you have been on the road. there have been a few reports of the use of botulinum toxin
injections; rather than cut or stretch a muscle, the toxin relaxes the muscle and that can aid swallowing. However, further studies are needed to see whether this will prove to be a useful longterm treatment. If the dysphagia is preventing adequate nutrition or there is a risk of aspiration pneumonia, then alternative methods of feeding can be used. The most acceptable, in the long term,
is gastrostomy. A minor operation is used to pass a tube through the front of the abdomen directly into the stomach. Patients and their relatives find this easy to manage at home. If the normal diet is compromised, then a dietitian is your best source ofadvice with respect to supplements which can help to maintain
adequate nutrition. Supplements by themselves aren’t really much help, but because the immune system is compromised a lot of us find we need Vitamin D and frequently because of the neurological involvement our B levels are alos deficient.
I can not speak highly enough about gastrostomy even as a way to add supplemental nutrition.