How fast is this disease

SRCB

On Monday July 19 my LO walked from a parking garage into a hospital for his 6-month check up with his Dr. On Thursday July 22 his knees buckled under him and he's been in a wheelchair since that day. He was running a slight fever and retaining urine, so, we took him to ER to check for infection on Friday July 23 and after lots of tests there is nothing physically wrong with him and no reason his body shouldn't bear his weight. He is 5'10" and 155 pounds. There have been some medication changes for behavior but all on lowest dose. 

He starts working with a PT/OT this Sunday. Is this a super fast progression of the disease or something else? I was expecting this to happen over months/year not complete ambulatory loss in a matter of days. 

dayn2nite2

When was he diagnosed?  When did you start noticing issues (in hindsight?).  In general, I have noticed people who are diagnosed in mid-stages dementia live about 6-8 years after diagnosis, but the younger he is, the faster it goes.  Other medical problems also have an effect on how fast progression is.

When my mother lost her ability to stand/walk, it was within a matter of days.  She was diagnosed at 65, lost ambulation at 69 and dead by 70.

SRCB

Thank you day2night2; I'm so sorry for your loss. It helps me to hear other's experiences though. This disease is awful. 

He was diagnosed in 2019 and moved into memory care in Aug. 2020. He has been shuffling for more than a year but very active and walked daily with the walking club in the MC. He is 77. 

harshedbuzz

SRCB-

I am sorry you are living with this further downturn in abilities.

Sometimes vascular dementia progress in a series of significant steps and plateaus compared to Alzheimer's which seems to have a steadier rate of decline. Perhaps that is the case here. FWIW, a number of PWD I know lived several years after they lost the ability to walk.

That said, I would reach out to the prescriber to see if the med change could be related. I would also double check medication records at the MCF to make sure they are giving the correct dose- especially if he isn't being seen by the in-house physician. My dad was in a SNF after a hospitalization and there was a glitch in the medications ordered for him and yet another when he was transferred back home. The second was a nightmare. The pharmacy not only filled prescriptions for the wrong "John Smith DOB 01-23-4567" the SNF doc didn't renew the psycho active behavior meds.

HB. 

star26

Are the fever and urinary retention resolved? You won't know until you see how he responds to PT but I wanted to share that my Dad had this happen several times and he recovered each time. At the time, he was in his 80's with moderate dementia. My Dad had become a shuffler too, but got around quickly and well. Because he already had weakness and limitation in his legs and walking ability, it didn't take much (a flu, an infection, a sedating medication, a medication that just didn't agree with him, or just not feeling well: cause unknown) for him to reach the tipping point and suddenly not be able to stand up on his own. But when his body recovered, his walking was back to baseline. I hope the same happens with your Dad. I had to be very insistent and pushy about him getting up and walking with the PT, doing his exercises, and getting back on his feet asap.

Fad marie

I am sorry to hear you all going through this, but I do appreciate you sharing because it is informative and will help me if my mom experiences the same thing with walking.

SRCB

Thank you harshedbuzz; I appreciate the insight. We have definitely been in contact with general Dr as well as psych Dr. I didn't think of confirming with the MC they have everything straight.

SRCB

Thank you star26 the UTI tests came back negative. Your dad's experiences are encouraging and definitely hope we have a similar experience.

SRCB

Thanks Fad marie ... I definitely look around posts trying to understand what the future holds too. This forum has been super helpful in letting me breath, understand that the wacky can be normal, and know what may be lurking around the corner. Best of luck to you and your mom.

Tauruslady511

I’m so sorry you LO is going through this.  

My aunt had Alzheimer’s; as far as walking ability, one day she was walking, the next day she proclaimed she could not walk and was in a wheelchair, then bed-ridden, until she passed.

 
As far as how fast the disease progresses, it’s very subjective.  While my mom wasn’t diagnosed until 2016, she definitely showed signs and symptoms years earlier.  She had many so-called “memory-enhancing” supplements hidden in her house. The bottles dated back to 2006.  She knew something was happening.

BuffaloGal

My mom lost her ability to walk or even stand up about 6-9 months ago. Her Memory Care has to use a lift to get her out of bed and dress her. Up to that point she was still using her walker even though she hated it. Even if we did intense physical therapy I doubt she will ever be able to walk again. Just one more facet of the disease.

LovingAwareness

Is your LO on blood pressure medication? Just a thought, and I'm sure his doctors probably would have checked/adjusted for this, but as his condition progresses, a longtime medication like blood pressure might need adjustment. A couple of months ago, right after my Dad started taking a low dose of Seroquel, we were noticing really excessive over-sleeping during the day, low blood pressure, and he was walking unusually slowly and unsteadily when he was awake. We were afraid we were at the precipice of his losing mobility. When we talked with his primary doctor she said he should keep taking the Seroquel, but she cut his blood pressure med in half. He bounced back to baseline pretty quickly. His blood pressure is a bit high, but his doctor said not dangerously so for his age (85) and progression of his dementia - a little high is better than too low. Just wanted to share in case it could be a similar issue, as you said it happened after a medication change.

Cobalt

Can't tell you just how many changes have happened in just one year for my son with EO, but here are a couple stories so people will know that odd things can happen.

For a period of 5 months, my son lost his ability to tell if he needed to urinate or have a BM.  He was and in using diapers all the time, but it's good for him to use the toilet whenever possible.  It's good exercise and "normal" and he wants this.  Then, about 5 months ago, the sensations combined with his brain came back unexpectedly, and voilá most of the time he can tell us ahead of time and we get him to the toilet right away.

7 months ago my son began episodes of becoming "dead weight" on getting up with assistance from a chair or bed.  This was extremely alarming and hard to deal with although he only weighs 92 pounds and is small.  Have people come in to do a refresher training on using a Hoyer lift if we need to get it out.  Got transfer belts, more gait belts, a slide board, and prepared for a difficult road ahead.  He couldn't use his arms to push up from a chair and he couldn't bear weight standing.  So guess, what, about 5 months ago, only 2 months into the problems, he suddenly had no problems bearing weight.  No one can figure out what is going on, but I'll take small blessings.  We do know over time, those things will come back, but boy, the last 5 months have been a breeze compared to last fall.