Stroke Life Society

"United In Pursuit Of Living And Helping Others"

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Lou Macolini's Story

(Stroke Survivor)

 

 

On February 21st 2009 Louis (Lou) Macolino was at the visitor’s desk at Stony Brook Hospital to visit his sick mother when he felt a tingling in his lip while applying Chapstick. The next thing he knew he was on the floor and unable to get up. He was having a stroke. He was taken to the ER where he was evaluated. There he was able to speak and interact with the doctors but his left arm was not working and his left leg was very weak. An MRI confirmed a blockage in the right side of his brain and he was sent to emergency surgery for its removal. Dr. Wang performed the surgery in which a filament was threaded through his veins into his brain in an attempt to remove the blockage while administering anti-coagulant medication. After the surgery, Dr Wang said that the clot was very stubborn and he was not able to remove it all but the medication should dissolve the rest. Unfortunately Lou had an anomaly in his arterial system which prevented the bilateral sharing of blood from side-to-side which would have lessened the damage from the stroke. The family was told that he may or may not recover; we just had to wait and see.


An hour later we were able to see Lou in the recovery room. Besides being very drowsy and ‘out of it’ he seemed ok. He was not able to use the left side of his body very well but he was awake, alert and could answer questions and remember everyone. After a couple of days he was told he was ready to move to rehab and was evaluated by PT and OT. That day he started to act differently: he could not swallow and his facial expression changed; his eyes became crossed and he couldn’t speak to us. Lou doesn’t remember much of the next 2-3 weeks but it turned out he had another stroke, this time in his brainstem, which caused him to lose his ability to speak, see clearly and balance himself. This also seemed to cause very impulsive behavior. After about 3 weeks he was able to start swallowing thickened foods and was considered sufficiently medically stable to go to rehab at St Charles.


The first week at St Charles was difficult. When Lou was evaluated by doctors it was determined he was not able to swallow well on his own and he needed to be fed through a tube in his stomach. After a week he had improved enough to be taken off the feeding tube and start therapy in full. At this point Lou had a condition called Pushing Syndrome which is rare and caused him to constantly feel he was falling. He had no use of his arm and little use of his leg on the left side. He had double vision due to his eye imbalance, and could speak and swallow very little. Also, he could not stand or walk and had very little communication with the family and friends. After about a week of therapy he was able to stand with assistance, after another week to take small steps, and after about a month to walk about 50 feet on his own. In this time his speech and swallowing also improved, although he was still very impulsive and he’d have difficulty expressing himself. Although he remembered family and friends, he would sometimes get confused about where we lived and so on.


Lou was discharged to St Johnsland facility where he stayed about a week until he was cleared to return home. There he first slept on a hospital bed on the first floor with an aide at night to watch him. Over the next month he worked with family members every day on exercises for balance, speech and strength and was soon able to get up and down stairs on his own, and walk longer distances with improving balance.


Lou has come a long way these past four years. He continues to receive speech and PT, but not as frequently as in the past. His voice was never fully restored but he does speak intelligibly, just more of a slow monotone. His balance and walking are good but slow; his vision has improved almost 100%; he can eat whatever he wants but must be careful to eat slowly or he coughs a lot. Lou’s left leg regained about 75% of its strength; his left arm became spastic which really limits its use – many rounds of PT and Botox injections have given only temporary, not lasting benefit. As for the impulsivity, this has calmed significantly over the past two years.


Finally, Lou is still striving and is hopeful for more improvement.


Louis Macolino Jr


[Editor’s note: Lou has been an active member of Stroke Life Society over the past two years, and is a popular participant in the support group. His progress has been observed with pleasure by his Stroke Life “family”. The list of improvements includes his sense of humor which is always to the fore, now becoming sharper and more irreverent by the month!]

 

To contact Lou:

Send email to survivor@strokelife.org and be sure to put 'Lou Macolini' in subject text.

 

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