My DH has been experiencing some new symptoms that I would like to get other's opinion on. We go to the Neurologist on Monday and there has been a lot of change since last visit in August. He has been to our Primary Care Dr. twice during this time, has had blood work done and has been told he has "Parkinson-like" symptoms. What is happening is he seems to be losing his muscle tone in his whole body, especially his legs. His coordination is very bad, he has fallen four times. He now has a walker and/or a cane. He has a terrible time walking any distance and it is really hard for him to get out of his chair. I've been trying to help him by bracing him, etc. and I am just about worn out. My back is currently causing me problems. DH has gained a lot of weight in the past six months, had to buy bigger clothes. No excercise. He weighs around 275 lb. and is 6 ft. tall. What is happening to him? I try to encourage/bribe him to get up and walk, etc. and he says his whole body aches. I'm wondering about arthritis, his mother had it really bad. Someone on the message board talked recently about their DH being bed ridden. My husband would be very content to stay in bed all day, every day which is totally and completelly opposite of what he was before AD. He was a workaholic big time. He can no longer dress himself or take a shower without assistance. Is he just progressing into the next stage? He was doing so well through the summer, I was getting adjusted to things pretty much. Now this loss of muscle tone and strength scares me. Any one out there had this happen?
Jayne, I had a doctor once mention that Gene had Parkinson like symptoms. He was referring to rigidity. Your DH is about like my husband on walking. He has good days and bad days or times of day. He only uses assistance part of the time. Gene's muscles are gone. He has lost about 30# that he could not afford to lose. He weighs about 125 to 130 now and about 5 inches shorter. When he falls I can't get him up. I have to call for help. Your DH is so big, be careful of your back. If he would accept it a male aide might be helpful. I find AD is just one change after another. As for the body aches, try a Tylonal or 2 in the morning. Helps my DH back.
I may have some other information I can retrive for you.
Apraxia - The "freezing" is occasionally the mark of a motor planning problem called apraxia. He is unable to get the sequence of the moves in the right order.
A momentary distraction can work to unstick the person, giving him a non-verbal cue such as taking his hand and moving to to the next logical body position in the sequence he was following. The more you try to try to instruct or coax, the more he tries to think about the activity, and the less he is able to do.
One thing that might help when this becomes a problem is a visit to (or from) an occupational therapist. OTs are trained to simplify all tasks to levels where the patient is able to participate. Ask your MD for an order for a single OT evaluation with an OT who works with brain-injured people.
Jayne, almost every AD sufferer (is that a word?) gets to the point where walking is no longer possible. I don't know if that is the point at which you find yourself, but it is a possibility. A lot of it has to do with the inability to "pull it all together"....the apraxia described above. An evaluation of the condition couldn't hurt. As with everything else you just do the best you can under some terrible circumstances.
When my husband couldn't walk any longer it was a blessing for us. He was falling constantly and refused to sit down...he was a pacer. I can't tell you how many times he broke his nose those last few months of walking.
Reading what you are all dealing with has stirred up some not too pleasant memories of hard times. Please know that I understand.....
Thank you all so much for your input! I checked Apraxia on Web MD and found some good information. I pray that he is not experiencing this, but I plan to discuss this specifically with the neurologist. Also, I had thought of physical therapy, but the primary care Dr. didn't mention it. He saw how much trouble DH was having getting around. He prescribed 600 mg. of Ibuprofen 3 times a day. No noticable help. Might cut down on pain for him? Since this has come on so quickly, does that rule out arthritis? At least he could take medication for that. Is there any meds for apraxia? I couldn't find anything on Web MD. Thanks Barbarakay and Sandi! I did not know that most AD sufferers get to the point where walking is no longer possible. I have heard stories of them wondering around NH, etc. But I have also heard of them sitting in chairs or lying in beds staring into space. I will say again.....this web site is invaluable. I like what shoegirl said on another topic that she felt she had stumbled upon a tribe of people that spoke her language. Very well put! I really laughed out loud when I read that, Shoegirl.
Sid has been getting weaker and weaker over the last few months. He gets winded walking the length of the house. We have been to countless doctors. The diabetes doctor said that the weakness and shortness of breath was NOT due to the neuropathy or diabetes. He recommended a cardiologist.
Not all the tests results are in from the cardiologist, but the EEG did show that his heart wasn't pumping fast enough. Next week we have an appointment to discuss all of the test results. It NEVER ocurred to me that any of this could be AD related, mainly because diabetes destroys all of the internal organs.
Having a background in speech therapy, I know apraxia in relation to speech disorders, but I wasn't even thinking about it in relation to other motor movements. What a tangled web this AD is turning out to be.
Have been reading some for awhile on this great site. This is my first time to post. After three years of fairly slow decline my wife started to decline rapidly. We had her doctors investigate and this quote from her neurologist sums it up. “As further discussed with the husband, it is possible that she does have a type of Alzheimer's disease that does progress relatively rapidly, and this is a conclusion we will have to reach if nothing else if found.” I didn't know there were "types" of AD but they couldn't find anything else wrong with her. She can't walk and can only stand if I hold her up. She now wears depends. Once in awhile she can put food in her mouth but mostly she has to be fed. None of these were true three months ago. This rapid rate of decline put me behind the curve on dealing with this thing. There's more I'd like to write but now I need sleep. So, Jayne, I guess rapid change can happen due to AD. Hope I can write more later.
Welcome to my website. May I ask how old your wife is? EOAD (Early Onset Alzheimer's Disease) is AD diagnosed before age 65, but there is EOAD that is diagnsoed before age 50. We have many readers's whose spouses fall into that category.
EOAD can SOMETIMES, although certainly not always, go into a rapid decline.
This disease is so unpredictable - you never know what will happen next. When you get a chance, I invite you to read http://www.thealzheimerspouse.com/rollercoaster.htm - A Blog I wrote on AD - the roller coaster.
Oldbiker: Notice how the doctor chooses his words: 'possible & if nothing else is found.' It is almost impossible to get an accurate diagnosis w/these brain conditions w/out a biopsy. Sometimes more than one condition is present. I know there are 'types' of cancer, but I don't know about specific 'types' of AD. I do know, however, that some AD patients live less than a year after diagnosis while others live nicely for over 20. Probably a lot depends on where the patient was in the progress of the disease when diagnosis was made. Most family will say they knew somethng was wrong for a long time before the doc was seen. Some people decline in steps, others on a slide--gradual or rapid--some like stepping off a cliff. It's the nature of the illness. You have plenty of company being behind the curve. As Joan says, it's a roller-coaster.
Try to get someone in the house to be w/your wife so you can sleep at night. As you know, sleep deprivation is a form of torture, it's very serious. It compromises your immune system and often creates confusion and forgetfullness.
Today we went to the neurologist for three month follow-up. Neurologist said DH needs physicl therapy and gave me an order for this. Her diagnosis is ATAXIA. According to Web MD this is pronounced (a-tak'se-a) and is defined as "the inability to coordinate muscle activity during voluntary movement; most often results from disorders of the cerebellum." Sound like DH's discease is progressing. She ruled out arthritis. She did not prescribe any further meds, but did highly recommend physical therapy. I will call tomorrow and get it set up. I think the physical therapy is simply to keep him limber and give him exercise. I'm not sure how long the insurance will pay for it if he can not be rehabilitated. Any ideas out there?
It depends on the insurance, but most will pay for a specific amount of visits. Sid is receiving PT now, because his back is a mess - bulging discs; spinal stenosis; arthritis - only an operation will really fix it, and he is in NO condition for surgery. Our insurance authorized 12 visits.
Our primary care doctor is part of a whole system - most of it is in the same building. We belong to the gym that is part of the medical center. The PT said that when Sid is finished with her, she will write up a program for him to continue at the gym. I am sure your PT will give your husband exercises to do at home when she is finished with him.
We are seeing this daily. DH is taking PT now but I imagine they will dismiss him soon. Don't want to use up all that medicare will pay for this year, with it only being January. I am going to talk to them about him continuing to use a couple or so machines later, while I am exercising.
His back spinal stenosis is almost causing him more problem than anything else.
My husband has a condition called Progressive Supranuclear Palsy which is called a "Parkinson's Plus" disorder. He has lost most of the muscles in his legs and his neck is very stiff. He falls a lot and has trouble getting up from the bed, a chair or the toilet. The have told me that physical therapy will not help. We have an occupational therapist who has been to the house several times. She has yet to provide us with any worthwhile advice.
Yes, Lois, I've discovered that the problems my husband has with his leg, and the arthritis there that can't be treated much because of the infection that's incipient in it, and the walker that he must use to get around - all these things really cause more problems than the dementia per se. He loses the walker. He forgets why his leg hurts - every morning he seems surpised that it doesn't work right. Etc.