My dad was dx'd about 2 yrs ago with Alzheimer's and is probably about stage 5-6 now. He's on the usual meds....Aricept, Namenda (sp??). He's far worse physically than mentally. He has a hard time getting in and out of bed. Can't get up from the chair, has trouble sitting in the chair, etc. Also, very low blood pressure...we have to take it twice a day to make sure he's ok on that end.
The Neurologist won't recommend physical therapy...say's it won't help him?? I'm wondering what we can do at home to help? He was a mechanical engineer and I'm thinking of making a sort of "busy board", like the babies use. But, I don't want to insult him, either. As far as his physical decline, I'd like to get him some simple exercises that he can do at home with help. I truly believe he needs the activity, but not to any great extent. Just enough to strengthen his legs, which are worse than ever!!
I remember my grandmother dying from Cancer, yet still determined to keep up her exercise regime (don't waste the moment!!) ....... she had this thing, it looked like bicycle pedals attached to this like chuck of wood .. it sat on the floor and she could pedal it. It DID strengthen her legs and her mobility improved until the time of the disease came where she could no longer get out of bed.
And I've seen physio's do similar things with the upper torso and arms. A skipping rope on a pulley system .... handle in each arm and they swing their arms.
And no ........... not the feet and the arms at the same time .. lol .. (insert ridiculous looking picture here)
But it does help.
Give it a whirl if you've got a handyman close at hand or check out your local mobility shops (you know, the ones that sell the electric scooters and other aids) if they don't have it, they'll be able to put you on the right track.
Just a sideline note: I had a physio tell me one time that the dementia pt's physio routine was just a waste of time because they forget and don't keep up the exercises. I told him he was slack and uncaring because there's usually enough people around (1) that is required to make it into a game! So what if they forget the rules? Sheesh ... !!!
... your loved one hasn't forgotten you ... the DISEASE doesn't remember you
Last edited by gemini1961; 09-02-2008 at 03:22 PM.
Welcome Vicki...so glad you found us. I was thinking maybe swimming might be a good exercise for your Dad. Nothing too strenuous, just maybe a few laps to start, using a kick board for a lap or two until he can do more and build strength.
How old is he? Is the muscle weakness partially due to age, a medical condition other than AD, or due to AD? If it's AD, then some of his inability to get out of chairs and beds may also be due to problems with depth perception (the illness affects all parts of the brain beside memory - the "Alzheimers' shuffle" is another symptom) or he might not be able to understand what you're asking him to do. My DH has impaired language skills, and I honestly don't think he understands me sometimes when I ask him to get up or to do something that seems very simple to me.
DH was diagnosed with arthritis in addition to his early onset AD. Our doctor also said that PT would not be of use. The doctor explained that DH was unable to cooperate with the recommended exercises, and could not perform them independently. Since the exercises would cause DH some pain (at least initially) and the benefit would not significantly improve his functioning, physical therapy was not prescribed.
Don't worry about insulting your Dad by coming up with simple activities. You might bring him a box of screws and nails (big ones!) and say that someone gave them to you, and you need to have the nails and screws separated. Don't worry if he doesn't get it right or takes hours with the job. Anything that keeps him busy and makes him feel that he's contributing to the family will be appreciated. Pets are useful (cat needs to be brushed or petted; little dog needs to be walked in the yard or a toy thrown to it). If you don't have a pet, maybe you can borrow one. I get DH moving off the couch by asking him to take something into the next room for me. As long as it's something I don't urgently need in case it gets misplaced, he very happily takes things from room to room all day.
Ultimately, if your Dad finds something too hard or too stressful, he may refuse or you might see some other behavior problems. I have noticed that DH can become overtired with less and less "exercise," and then he will have trouble sleeping. DH does sleep a lot more with the illness, so he is less active as it progresses. DH is around stage 6 now.
I would definitely check with the doctor before starting any exercise routine. My Dad has PAD and we have been told NOT to push him as far as exercise is concerned. At this point Dad has to rest after a shower, snoozes after a trip to the dining room, and spends most of his time in his chair. He does have trouble getting up and down. His is a vascular problem, not a muscular problem. He did end up at the ER once after an outting with extensive walking. So be sure what you are dealing with.
Mom did get PT after her fall. She didn't remember how to do the exercises and had to be retaught each time somebody helped her. I am not sure it was very beneficial but at least they tried
A busy box of things your dad would enjoy handling would be a good idea. You may have to try various items until you find the right pick. Nuts, gears, bolts, and pieces he can put together might work. Or something he can take apart which is easier. Perhaps even a box of old photos, letters, certificates, or other items that would trigger good memories. Dad and Dad both love their scrap books one of my sisters did.
Welcome to the board Vicki. This is a super group of wonderful people. Grab a towel and hang around a while
Thanks to all for the replies!! My dad is 78 and other than Alzheimer's & low blood pressure (runs in the family), his health/heart/circulation, etc. is good...so far. We take his pressure twice a day to make sure he won't pass out which has happened.
He does have that "RSD shuffle" and I'd like to know what exactly causes that and if it's very common. Is it just a normal phase of the disease?
Swimming is out of the question...he's very fearful of leaving the house and it's a chore to get him in and out of the car. I have severe spinal problems and RSD (which is how I found this board) and home on disability, so it's tough to help him around. The only place he'll willing go is his doctors, which is at least a positive. Mom, God bless her!! still works teaching second grade...don't know how she does it???
I'm left with him during the day to tend to his needs. Today was Mom's first day back to work and I kept checking on him (he sleeps all day) and offered to make him lunch, but he wanted to do it on his own...a good sign. He has his good days and bad. I don't like that he sleeps all day and want to keep him partially busy with something. I will put together some screws and bolts and other mechanical things as suggested. I'm sure he'll be "wise" to it, but maybe it will help him to feel needed.
This is a horrendous disease and I feel for each and every one of you who are dealing with it. Thanks so much for the suggestions and advice. I'll be back (I spend most of my time on the RSD board)...but, I think I need you guys You're all in my prayers!
My MIL has that shuffle and I think it is due to not being stable. When your bones get frail it does not have the support it should and the body is afraid of falling so this is the best way to not trip on anything.
She got to where she couldn't get out of bed and would just fall. The dr had a PT come out to her house and worked with her. He said there was nothing wrong with her and true enough, once she worked with him for a couple of weeks she was fine. She just didn't get out of bed and decided to vegetate. Of course I asked my husband if she ever exercised when she was younger and he said no. They do say that people that tend to exercise have better circulation, which I can believe.
Unfortunately, not that she hasn't had PT she has gone back to laying in bed all day. What's frustrating is her son is there ALL the time and is too lazy except to eat her food and watch her money!
I just want to clarify one point in this thread and that is the mention of the "shuffle".
That gait is also a symptom; one of the triad of symptoms (others are short term memory loss and sometimes incontinence), of Adult Onset Normal Pressure Hydrocephalus (known as NPH). A cause of dementia that if caught early enough is REVERSIBLE. Unfortunately many physicians do not recognize the condition.
I have read that 15% of patients diagnosed with AZ actually were misdiagnosed and have NPH. A condtion that could have been reversed if recognized in time. My DH is one of those who was told he had early signs of AZ. By the time his "shuffle" was seen by a physician who recognized what it was the condition was no longer treatable.
I am concerned that someone reading these posts with a loved one with a "shuffle" or as it was described by my husband's neurologist "walking like your feet are sticking to the ground" will see it as another sign of AZ.
I was told by our neurologists that the AD shuffle is related to a loss of depth perception combined with a loss of motor skills. As Raffeer's heartbreaking story shows, though, it appears it can have another basis in a small percentage of cases.
When looking for an AD NH, I was told to avoid NHs that have patterned rugs since a severely impaired patient might view the patterns as being dimensional (likewise, avoid moldings the same color since a severely impaired patient might not understand that the moldings are not part of the floor). Another suggestion for AD patients relating to the loss of depth perception was to put a very dark floor mat by doors (a patient may view it as a hole instead of a floor mat, to deter wandering).
One of my kids spent the summer volunteering at an AD NH, and noted that most of the patients who were still mobile had this "AD shuffle." If you find the 'time to nursing home and death calculator' on the internet, this physical symptom is one of the criteria used by Columbia University to measure the severity of the disease.
It's sad to say about rehab but sometimes 'it won't help' is the right answer. We're very used to certain motions, it's like a reflex. We don't have to think about how to walk, we just do it. Getting out of chairs, getting out of cars (unless you're getting out of a Corvette in high heels and a skirt) - is something that's in muscle memory and we just do it. AZ patients don't always have that muscle memory any more.
Older people need to move around otherwise its a vicious circle - the less they move around the less they are able, and the more likely they are to fall, but I'm not sure how much benefit the AZ patient will have.
My dad also has alzheimer's and requires physical therapy. He has very weak legs and I am fortunate that we are able to get in home PT for him. I'm not sure why the neurologist says it won't help your dad. The physical therapist has been able to strenghten my dad's legs to the point where he can now get in and out of bed and chairs and even goes for short walks. I would talk to his primary care doctor and explain that you would like strengthening exercises for you dad. Many of them are done laying down on the bed. I can't physically lift my dad so I had to get help so that he could lift himself. It has worked wonders.
I found out the other day that a lady who was taking Motilium AND Stematil (both anti nausea drugs) had the *Parkinson's Shuffle* and her GP diagnosed Parkinson's and kept writing scripts.
He went on holiday and had a locum in, and she had to go and see him. He asked about her Shuffle and told him what the GP had diagnosed, and he pondered this and sent her for formal testing.
Voila : the lady is allergic to motilium and stematil. When those medications were removed from her medication regime, she slowly improved AND now shows NO SIGNS WHATSOEVER .........
So ........ yes .. question your own GP, they DO become complacent (sadly) with their own patients, research your medications, ask questions and don't settle for one answer!!!
(PS: My hubby came home the other week from visiting a doctor (my doctor has just hired to help with the practice ... ) with Lipitor (Cholesterol lowering) and Diaformin (early diabetes) ..... my immediate question was "Why????" Hubby said "My cholesterol is up a bit" (a bit???? What's a bit??) and my blood sugar was 100 or something" ........ Well, let's start with if it was 100 or something he would be DEAD. He had had NO formal testing for either problem ... so a few phone calls later, I had an appointment with my doctor, who eventually sent him off for formal tests. No diabetes .. don't take the Diaformin, and yes, the cholesterol is up *a bit* but let's try a bit of a diet regime before we throw you on a medication you can never come off")
... your loved one hasn't forgotten you ... the DISEASE doesn't remember you
Wow Sally, that is something that happens again and again, sadly. My Mom was put on a statin drug 'routinely' after the heart failure episode, along with 5 other drugs ..and began to become mentally confused. It was the beginning of her Dementia. Sometimes the drugs do more harm than good.
It is important to research all medication side effects and be alert to changes. It is also important to be absolutely sure you need a drug and not just respond to a temporary situation or medicate something you can control in other ways.
I am the poster child for why statins are bad. I had gained weight and was eating all the wrong things. My cholerterol numbers were all out of whack. My doctor, in good faith, just put me on the statin Lipator. In good faith I bought the drug and faithfully took it every day. I because a stranger to myself and others. My sunny optimistic personality turned into a dark raving witch. Paranoia and cognitive problems clouded my head. My usually dry eyes stayed wet. I began to have mysterious aches and pains. Until I made a week long trip and forgot my medication. I didn't have the time or desire to replace the medication so I went without it for a week. On the way home I had to look in the mirror to see if that was me singing to the radio and smiling as I drove. I connected the dots and didn't start taking the Lipator again but went to my doctor and explained what had happened. It took a long time but I did return to myself again. There are big red letters on the front of my chart reminding any future doctor that I am NOT to take statins!! I was later put on Tricore and guess what.... it all started again. I was aware of the possible side effects and stopped it after a month. I have since lost weight, bought a bicycle to strengthen the leg muscles that were damaged, and I am happy again. I live with my cholesterol!!!
Every medication has side effects and even those that claim to be safe may not be right for everybody. Educate yourself to not only the side effect listed in big print on the package but ALL side effects. Pay attention to all physical, emotional, and mental changes. If you even suspect a medication, and it is not life threatening in an immediate way, ask your doctor if you can stop the medication long enough to see if it is the culprit. Medicating the symptoms of medication is not a good idea.
There have been numerous studies that claim the statin drugs are DETRIMENTAL to anybody with Dementia (see Deb's personal story!!!) it enhances the symptoms of dementia, so your stage 5 loved one may only really be a stage 1 or 2.
I am NOT a fan of Statin drugs ESPECIALLY when there is proven dementia in the blood line .. my hubby's memory is bad enough without having a drug making him worse!!! Yes, dementia is in his family, and over my dead body am I going to let him take anything that is likely to make him turn into his mother!!
... your loved one hasn't forgotten you ... the DISEASE doesn't remember you