My life with ALS and FTD

By Sreedharan Nambiar (Raj)

ALS with FTD is the cruelest of diseases, relentless and unpredictable. It's an especially complicated and challenging form of disease and our understanding of it is still evolving.

Doctors and researchers are increasingly recognizing that many people with ALS also experience cognitive changes consistent with FTD.

Friends, I am living with ALS/FTD.

Indeed, as many as half of those with ALS exhibit behavioral changes or a decline in language skills similar to those observed in behavioral variant FTD or primary progressive aphasia. Conversely, a large number of people diagnosed with FTD, also develop motor symptoms consistent with ALS.

ALS can present in myriad ways, with weakness in any segment of the body. Roughly a major part of patients present with limb weakness, and some people present with bulbar weakness (trouble speaking or swallowing), and a small number present with respiratory insufficiency. Similarly, FTD can manifest early on as a predominantly behavioral syndrome or as a disorder of language; these patterns of disease can look very different. Both ALS and FTD can have variable disease courses as well.

ALS is unpredictable – it can first manifest in any part of the body, then spread in a variety of patterns. One common presentation is when weakness starts in one arm: It will then spread to the opposite arm, then to the leg on the side of the body where it initially started. But it is harder to predict when respiratory or bulbar muscles may become involved. In both ALS and FTD, the speed of progression can be variable and is hard to predict. The best predictor of rate of progression is the patient’s individual history, as rate of progression tends to remain constant within an individual.

I have tripped and fallen several times and wondered if this was a common problem in ALS. Additionally, I have developed muscle cramps in my legs. The neurologist, first believed that the Medication for gout most likely caused the cramps. He prescribed some other to counteract them and discussed adding prednisone, a steroid, to treat my apparent leg weakness.

The doctor at last, determined that results of my examination were consistent only with a diagnosis of ALS with FTD; no other diagnostic considerations would account for all of my symptoms and signs. However, other conditions could potentially account for some of my symptoms, so additional tests will be needed to rule out those diagnoses.

The evaluation indicated progression in other symptoms. I  spoke rarely, and when I did my words were nearly unintelligible; I sometimes, continuously looked to my wife to speak for me.

And today,  my physical condition deteriorated rapidly. Throughout my journey with ALS and FTD, I hoped for a peaceful death. Still is my hope... !

Thanks for reading

Sreedharan (Raj).