MSA Ken's story

[Guest guest]

Yes Pam, and others, I would be happy to share Ken's story with you. This

may be a little long

We first noticed what we recognized as symptoms about 1988 in that he

complained when he got up out of a chair he felt he was going to keep going

forward. I told him he probably got up too fast.

Shortly thereafter he complained of a frequent slight tremor in his leg and

arm. time to check it.

After visit to HMO GP he was told it was Parkinson's. Asked for a

neurologist referral, who was very curt, - stated it was slight case of

Parkinson's but not bad enough to medicate. He stated Meds were worse than

the symptoms. We requested another opinion, which HMO would not approve.

So took him to another neurologist on my own. He also stated it was

Parkinson's and put him on Sinemet. We noticed no cessation in the

progression of his disease, in fact it seemed to be progressing very

rapidly. They kept upping the dose of meds and trying enhancers, but the

progression continued. He began falling, freezing steps, stuttering steps,

dragging foot. All sorts of mobility problems. Voice became very soft,

hand writing illegible and almost impossible after a while. Impotence, and

incontinence followed. After falls in which he broke his hip and needed a

total hip replacement, and six months later shattered femur on same leg, he

was never able to walk again unaided. Went into wheel chair in 1993. I

took him to Barrows Neurological Center in Phoenix when they were doing

Parkinson's drug trials, and he was turned down the first day of trial,

saying he did not have Parkinson's. They did MRI, PET, and some other

tests, and knew something was wrong, but couldn't make exact diagnosis.

Later examined at Loma U in CA and they suggested it was either PSP,

or MSA. Difficulty eating, & ability to cover his mouth when coughing or

sneezing disappeared which made it very difficult to take him out. Never

knew when he would sneeze all over someone. His condition was worsening so

rapidly, I needed to move to Ohio, where I had some family, as he was no

longer able to travel. Bought a van equipped with ramp and drove him from

Calif to Ohio in his wheelchair, as he was unable to get on a plane. No

fun! Getting him in and out of hotels, motels, restaurants for 5 days, but

I made it. He was examined at Ohio State U and diagnosed as having PSP from

a specialist in that field. Taken off all meds. Ken never complained much

of pain, even when he had falls. Lost all ability to speak. Could no

longer focus eyes to read or watch TV, and became very light sensitive. Had

to keep room dark. Developed Aspiration pneumonia from silent aspiration.

At that time feeding him took me about 2 hours each meal. He began losing

weight. Lost 50 pounds before the bout with pneumonia, and they then

inserted a peg tube. He never ate again. Received all food, water and meds

by peg tube. He became very rigid. Since 1995, I had to use a Hoyer lift

to transfer him from bed to wheelchair, where he would sit the biggest part

of the day. We went through all different types of Physical Therapy early

on and again later. Also speech therapy, all helped minimally and

temporarily. Nothing lasted.His head was thrust back and he could not move

it down. He could not open his eyes without my help and then could only

hold them open a short time. He slept a lot during the day in his

wheelchair. he never complained. He did gain his weight back on the peg

tube, but had to have an indwelling catheter, and had horrific bowel

problems. By the time of his death in 2000, he was totally rigid, unable to

move even his fingers or blink his eyes.But mind still appeared to be

intact. He knew everyone, it was obvious, and attempted to let you know he

understood by a slight squeeze of hand or blink when he was able. We talked

to him a lot, read to him, played music for him. etc. I was his sole

caregiver and rarely left the house for the last 5 years of his life. He

had many UTI's, erratic temperature changes, and spikes. Seemed to develop

seizures about the last 3 years of his life. Had them very often. Each

time he would cough or choke. Had a lot of mucous., and choking and needed

frequent suctioning (many times a day) for several years.

Strong heart, good blood pressure, no apparent other health problems. He

never smoked, was a firefighter for 30 years, drank only socially, worked

out and was a strong athletic man before this disease. In retrospect, we

have wondered if a severe bout of depression and stress which he went

through in 1981, was connected with this disease or just a mere coincidence.

That was the cause of his retirement from the fire department when he was in

early 50's. Sorry this was so long, but kept remembering symptoms. If it

will help anyone identify anything, I am happy to repeat it. As we looked

back over the years, we remembered several tell tale signs that seemed to

lead up to this before the first symptoms he complained of, like his

stumbling in our square dances and ballroom dancing, falling behind,walking

with me. At the time we didn't connect all this.

Bernice /spouse and caregiver to Ken 73 at death 06/23/00