[Leonard M Bozza]

I lost my wife to bulbar ALS after 39 months. I was her primary caregiver. I found information from the ALS association to be very helpful in preparing to deal with the progression.

You might want to check out als.org/navigating-als.

Things that you will need include:

Text to voice program for his phone and a blue tooth keyboard. You should also look into a Tobii device which will enable him to use his eyes to communicate. There is a learning curve and the sooner he starts to use this type of equipment the better. If you don’t have a power wheelchair you should start the process as it can take 6 to 9 months to get one made for him. In the meantime you can get a loaner from the als association.

The emotional side is very difficult to deal with. It was hard to see my wife continuously lose her abilities and be ready to help her 24/7.

If you would like to talk to me please feel free to call. 516 652 8314

Len

[Leonard M Bozza]

My wife used a non invasive respirator with a humidifier at night. This did help the dry mouth but you need to keep the setting on low or it contributes to saliva production problem. We would do oral care at night before going to sleep so she started with a clean and moist mouth.

I might also note that her saliva problems were reduced with the use of Botox injections.

As my wife’s condition continued to progress we learned that we had to anticipate the changes and try to stay one step ahead of her needs. Hoyer lift, power wheel chair, Tobbi eye gaze device , shower chairs etc.

If you have long term healthcare insurance active it asap.

I hope this helps and wish your husband the best..

[Leonard M Bozza]

My Wife participated in this medication trial under Expanded Use. It was available from Holy Cross Hospital In Fort Lauderdale Fl. It is now available from NOVA in Davie Fl. My wife had Bulbar onset and we believe that this medication extended her life.. We would recommend this trial..

Len Bozza

[Leonard M Bozza]

My wife first notice Bulbar ALS syptoms 2 weeks after having Covid in Jan 2021. We have always felt that there was a connection between the Covid and her ALS.. Her Neurologist at UVA felt that it was a coincidence.. After doing some research myself I contacted Doctor Smoith At the NIH in Maryland.. When I told him of my wife’s situation he asked what her Neurologist thought about the possible Covid connection When I told him that her doctor felt that it was a coincidence he siad “He is wrong. There is a connection but we just don’tknow what it is at this timet”.

I have very simple question that no one has been able to answer.. Has the reported cases of ALS gone up in the last three years when compared to the years before COVID?

[Leonard M Bozza]

it may be time to prepare for a feeding tube. It will provide a method to get nutrition and medications into your body without the possibility of aspirating foods and meds into your lungs which is a serious danger.

[Leonard M Bozza]

My wife used dental rolls between her teeth and lip to prevent her from biting her lip or side of her mouth.