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what is the physical part of ALZ - weakness, slowed gait, head down?
alz+
Posted: Wednesday, September 23, 2015 9:15 AM
Joined: 9/12/2013
Posts: 3608


I am very weak and have always been active if not athletic. I work to keep up muscle mass but the fatigue when exercising or now climbing steps, has increased to point of being very like recovery from a deadly pneumonia I had 40 years ago. I had to crawl up the steps for almost a year after as a single Mom.

Was hoping for a cardiac reason so I could get a pill that allowed me to go back to exercise class or at least enjoy my walks with dog instead of wondering if I can make it home as I sit in the dirt to get my breath.

I look at photos of people with dementia, and they bend forward. Looks like neck muscle weakness, or returning to fetal position.

I know we are all different but I am wondering if there is any info on fatigue and weakness as part of the illness. Is that neurological?



alz+
Posted: Wednesday, September 23, 2015 9:22 AM
Joined: 9/12/2013
Posts: 3608


Just remembered SUN posting about the confusion of working out.

Last spring I was swimming in hot mineral pool and one moment completely relaxed into a back stroke, a moment of divine relaxation, forgot I was in pool and struck head at end of pool.

In exercise class I am now lagging behind following class instructor while 85 year olds are using weights and kicking butt.

Maybe what SUN was writing about is the exhaustion of mentally being able to keep up with changing instructions? Is this PHYSICAL exhaustion?


The_Sun_Still_Rises
Posted: Wednesday, September 23, 2015 1:23 PM
Joined: 7/24/2015
Posts: 3020


Hi Alz+,

I also deal with physical weakness and fatigue. As my brain was going bad, I also had physical illness issues that took many years to sort out. But I spent years crawling up the stairs to my mom and barely able to do anything. Spent years with a walker...needed a wheelchair but wasn't going to admit it. Some years back a doctor thought it was Lyme disease and I did a year and half on antibiotics that only made me worse and gave me Parkinson's like symptoms. I had a leg that didn't work well as well. I can share some of what I learned along the way as it pertains.

In the end, my new doctor (bless her soul) discovered it was Myasthenia Gravis which is an autoimmune muscle weakening disease that one's immune system attacks the receptors in the muscles. Interestingly, and what pertains here, is that the medication for it is an acetyl-choline enzyme inhibitor (Aricept is a choline enzyme inhibitor). On the new med, which also does not combat the disease, I have energy and strength again...and had not deconditioned near as much as I had appeared to to everyone else. I had felt 100% for a while, now even with increase to top dose, I am about 80% of normal...and I am good with that...rejoicing that I will be able to do the walk this Saturday.

Heart DOES cause weakness.

So does lack of oxygen. You can check your O2 stats with the little finger monitor that you can pick up at the store.

My heart races like crazy when I stand. Especially if I stand still. No one has any knowledge of that...they look for heart dropping when you stand.

My blood pressure is very low. No one has any knowledge of that either...they only look for high. They changed the new high is 140 and over...so people will get blood pressure meds easier (if they want them). My blood pressure is even lower on the med for MG.

Depression can make you feel weak and fatigue.

Being overweight can as well. Being overweight can sap your motivation to do anything.

Confusion and difficulty of task can sap your motivation as well.

I get confused working out on my own...I get disorientated and it feels like I am in a different place at the Courage Center. To this day I don't know why that place gets me worse than anywhere else. I have a program in me for when I get confused, that I eventually figure my way to, of just going home...but there, I don't know how to get home from the new place. Whereas, at the grocery store, I know how to get home from.

Mental tasks...like the questioning you got the other day...that exhausts. You probably felt after like you had not slept for weeks. I have no explanation for why that exhausts so deeply.

No one seems to understand our struggles to follow things, like how they asked you stupid questions like how many kids you had...which had NOTHING to do with anything...ack, switching out of context and back and forth...what are they thinking?! I don't know any good resources out there to describe it in a way that people who do not have dementia can get it.

We DO curl up. That is a neurological part of the dying brain...we revert back into fetal position.

I also have muscle tightening and knots that no one can seem to explain. I take baclofen which is GABA with a small marker added on it to confuse the neurons into accepting it. It works wonders for me.

I have been coming to the conclusion that all my physical issue have to do with my dying brain...but am still awaiting the process we seem to have to go through with doctors. The tightness, the knots, the damage caused by the tightness and knots...the weakness and the brain...all seems to be the same thing, at least to me. Years ago, I would have been able to tie that together with medical terminology...now I just have my knowing and wrong language (which no one listens to anymore).

I see a neurologist in November. We are in the process of ruling out a medical cause for my dementia. I have had MRI's before so I know I don't have a tumor or anything. My new doctor has pretty much ruled out Lyme, but she is hesitant to say for sure...and I do not know how to communicate to her that I want her just to take a stand, I don't care which way she sides on that...just decide one way or the other. MG does not cause dementia...however, is uncanny in in its similarity. We have not ruled out auto-immune to the brain.




Jo C.
Posted: Wednesday, September 23, 2015 2:22 PM
Joined: 12/9/2011
Posts: 13608


This is a rather complex set of circumstances. Yes; some types of dementia can have a result in causing muscle weakness; that is one of the reasons why it is so important to have an accurate diagnosis for type of dementia. FTD has a frequent component of muscle weakness that most often comes with it as the condition becomes more entrenched.

However, that being said; sometimes medication can be the cause whether it is prescription, OTC, herbals, or combining some of them together. This can happen after one has been taking such meds or herbs for a long time; it does not always happen right away.

Also a complete set of blood labs would be helpful to rule out condtions with a CBC, full Chem Panel, and T3, T4, TSH for thyroid and also for B12 and other deficiencies.

alz+; I had an onset of horrible, horrible, extremely profound weakness. I literally felt like walking from the bed to the en suite bathroom was like climbing Mount Everest.

Everything was horribly taxing. I also felt very "down," and even felt rather cloudy and "mutton headed" at times. But the exhaustion and ten plus fatigue were the profound overwhelming symptoms.

My doctor was on vacation. I saw one of his MD partners who did a whole lot of blood tests and examined me head to toe. Nothing. It got worse, it was SO bad, I was pretty much on the bed or chair all day long. I just could not even push myself.

Back to the MD partner again who repeated everything and still nothing showed up.

By this time, I thought it might be cardiac, so I referred myself to a cardiologist who did an entire workup with echo, stress test, etc. Nothing; all was normal.

Then my own dear doctor, a very fine Internist, finally returned from vacation. By this time I barely made it into his office with my husband helping me. He looked at all the tests in my record and examined me and asked about the history of the onset.

He said, we need to rule out Epstein-Barr Disease, (this is mononucleosis.) I was startled; I had no temperature, I had no sore lymph nodes. I thought he was nuts.

Well; he wasn't nuts at all. The blood test came back . . . positive for RECURRENT Epstein-Barr Virus (EBV) and it was a doozy of a case.

It can last for five or six months and it did. I was so down and out. It was gone for several month and then came back again! Same symptoms! I was like an amoeba; I just could do nothing. It is hard to describe weakness to that degree. It was awful. I lost over a year.

NOTE: If one has recurrent EBV, it is not communicable. What it means is that sometime in your life, you have had acute EBV. It stays in the body and can recur at any time or never come back at all. Kind of like chicken pox and shingles.

Never, ever, did I ever know I had acute EBV; but I do remember when in about the sixth grade, I had a terrible flu that hung on and I also had very painful lymph nodes. I probably had EBV but it was undiagnosed.

It is no joke and the weakness is dreadful; so I would suggest if the doctor is going to do any blood work, ask him to check you for recurrent Epstein-Barr too. One never knows and it is easily done with a simple blood draw.

The second bout of EBV I had also lasted about five months, but it had periods where I would feel almost normal for a day or two and I would think I had turned the corner and was getting well, BUT: all of a sudden, down I would go again into severe weakness and deep fatigue. EBV often does that. Up/down, Up/down, Up/down, rinse; repeat.

Anyway, there can be many causes for severe weakness and fatigue and your Internist will have to begin a process of elimination to find out what may be happening. Insist on him really looking for any and all causes.

Sometimes doctors will blame everything on the primary chronic disease such as cancer, or COPD or dementia and not look further; that is not appropriate. The body has many different systems and before attributing new symptoms to the chronic condition, the MD needs to first look for any other causes.

I am sorry you are feeling so weak and fatigued and hope that the reason for this can be easily found so you know for sure why it is happening.

Big hug,

J.


Iris L.
Posted: Wednesday, September 23, 2015 2:23 PM
Joined: 12/15/2011
Posts: 18519


Alz+, I am wondering if your recent fatigue and reduced stamina is cardiac in origin. If so, there are many treatments for cardiac fatigue.


I too struggled with fatigue and reduced stamina. Over the years, I have found several causes and subsequent treatments.

--low thyroid--treated with thyroid supplementation

--anemia--treated with iron supplementation

--sleep apnea--treated with CPAP

--nutrition--treated with attention to diet and nutritional supplements

--overweight--treated with weight loss

--weak muscle tone--treated with weights and muscle strengthening

--pain--various treatment modalities


Right now I am dealing with a cardiac cause for decreased stamina. I seem to be improving with new medication.


I am not saying that all of this applies to you, but that there are many causes and treatments of fatigue. I worked with doctors for many of the causes, and also searched the internet.

I devote a lot of attention to my mobility because I am the only person to get anything done for myself. I have no one to rely on. I have come from being bedridden to being able to take care of my own needs. My mom helped me when I was bedridden, but she is gone now.


I have a feeling that the gaits you are thinking about are more of patients who are in the later stages of the disease.


Iris L.



llee08032
Posted: Wednesday, September 23, 2015 9:52 PM
Joined: 5/20/2014
Posts: 4408


I feel much more tired lately. Neuro Dr asks about that so I did think it had to do with dx. I find that I both nap and sleep longer. Sometimes I have issues with cramping and muscle spasms in stomach, back and legs. I just had the dr prescribe a mild muscle relaxer in case I really need it. I would never take it during the day or if I had to drive and don't even take pain meds except OTC. I had a case of mono in the past and did not know that it can return! EEK!
It makes sense that Dr's cluster everything together and blame all symptoms on the primary illness and don't look elsewhere. alz+ it feels like your not getting definitive dx or answers from the dr you have been working with about cardio issue or the weakness and your still not feeling better!

alz+
Posted: Wednesday, September 23, 2015 11:34 PM
Joined: 9/12/2013
Posts: 3608


I have had rounds of this incredible weakness since I had a near death from a pneumonia 40 years ago.

But I test neg for Lyme and all blood work is pretty good, except excess red blood cells.

It feels like legs of quivering cement.

Today I am back on Chaga tea and today was able to walk almost a mile, slow but up one good hill. It could be psychological but it does seem to be some kind of fuel my body likes. A mineral complex.

I am not on herbals meds, take no pain killers, off all anti nausea stuff, thyroid good.

There was fluid in my abdomen on one xray last week. NP said sign of inflammation or ??? but no word on that either. I just let my body heal itself.

No UTI, but forgot what someone said to test for...Epstein Barr?

Jo C - my Keeper wants me to get a shingles vaccine ... I have had shingles twice both in February. Is it worth it? will it give me shingles by mistake? Does it really prevent more attacks? that takes a lot out of me and do not want it again.

Anyone take shingles vaccine?

A neurologist told me not to get a flu vaccine once and so I did not for 15 years until there was a local drive to get everyone a shot. I passed out, wet the chair and was unconscious for 15 minutes. They banned me from public flu shots!

I went back to vegetarian 85% - since stomach stuff and have lost 12 pounds in past 2 months. So maybe still10 pounds heavy?

*****************

So many people take so many pills and chemo and stuff and it all goes back into the water supply. The residual drugs are not removed in water filtration. I have a well and it tests clean, but think of all the poisons we pee into the municipal water systems!

Well, waiting for message from doctor office on stress test and permission to go back to exercise class. My Dad was very active guy, played lots of golf and swam. He began trudging about where I am.

When I speak on phone I stutter and am confounded. I can still type and edit well enough but could not remember my daughter or son's phone numbers or addresses at lawyers this week. Needed help to write check, did not know date.

I just fear being inactive as part of ALZ progression. But when body wants to lay down nothing I can do but give in.

SUN - yes, I can not live alone anymore. It is a dream. At home assisted living.

Llee! My dog is more or less a service dog. when we walk and I get breathless she comes back to me and blocks me, I bend over and rest on her back. Today when I pushed myself on longer walk she did not hunt at all but walked within 20 feet of me the whole way.

When I used to be nervous in car she would straddle me and push me backward into car seat. The pressure and weight calmed me down. She also would sit at pool side in desert and watch me when I swim. She barks when some one comes (I have hearing loss) and if I ever go out in dark (no night vision) she walks so close to me I can feel her body, keeps me on road and gets me to porch steps.

When I panic she gets on my bed and lies across my legs. When she has seizures I am always there to help her, when she got skunked in the face I took care of her - happened when we first got her. She is my medicine.

thank you so much -I know we should not try to get medical advice from each other but it has been very helpful to learn what everyone else has found helps them.




Iris L.
Posted: Thursday, September 24, 2015 2:29 AM
Joined: 12/15/2011
Posts: 18519


alz+ wrote:


But I test neg for Lyme and all blood work is pretty good, except excess red blood cells.



Anyone take shingles vaccine?



I can still type and edit well enough but could not remember my daughter or son's phone numbers or addresses at lawyers this week. Needed help to write check, did not know date.



if I ever go out in dark (no night vision) she walks so close to me I can feel her body, keeps me on road and gets me to porch steps.





Alz+, was there a description or diagnosis given for the excess red blood cells? There is a disease called polycythemia.


Thanks for the reminder about the shingles vaccine. I do want to get vaccinated.


I can remember few telephone numbers. I do not stress myself out by trying to remember what I just cannot remember. I write everything down. I use my calendar. I take my time with all tasks.


Your dog is a great help. I am surprised to read that you go out in the dark. Do you carry bread crumbs? LOL


Iris L.





llee08032
Posted: Thursday, September 24, 2015 5:21 AM
Joined: 5/20/2014
Posts: 4408


Is the shingles vaccine helpful after you've had the illness?

www.webmd.boots.com/.../shingles/shingles-vaccine-after-havi...
Boots UK
Shingles is a painful skin disease that can be prevented with a vaccine, but is the ... or simply because it doesn't work as well as you get older– may allow the virus ... If you do develop shingles despite having been vaccinated against shingles ...

alz+ I had a horrible case of shingles on my face. My supervisor had it in her eye! Apparently you can get the vaccine as long as you haven't had any recent episodes. If the shingles do return following the vaccine it is reported that it will be a milder. Mild sounds worth it to me but still not sure of the side effects of the vaccine which also needs to be considered. More importantly you should be in good health when you get the vaccine. It is not recommended if you have a weakened immune system, flu, fever, etc.

alz+
Posted: Thursday, September 24, 2015 8:01 AM
Joined: 9/12/2013
Posts: 3608


shingles - thanks for info. I don't know if I will or not yet get vaccinated.

IRIS- going out at night/after dark

If someone does not go with the dog for her last couple relief short walks she is at age where she pees in house, or on bed while she sleeps.

My Keeper often conks out so I go out side with her. Porch light plus flashlight helps me get to end of driveway. But she sometimes, often, wants to walk to neighbor house and I would follow her, then be unable to see even with flashlight.

crumbs - some kind of trail maker is a good idea. maybe a glow in dark trail mix of some kind. I really do not like going out in dark anymore, vision is so bad it seems like a cloak is over my head, I stand still until dog returns and guides me back.

Today I was weak after getting up to use bathroom. I do need day and night protection from misadventures .


The_Sun_Still_Rises
Posted: Thursday, September 24, 2015 8:32 AM
Joined: 7/24/2015
Posts: 3020


Maybe fluorescent spray paint line in the grass beside the road???

Or temp fence stakes and a string??


Iris L.
Posted: Thursday, September 24, 2015 11:36 AM
Joined: 12/15/2011
Posts: 18519


alz+ wrote:


Today I was weak after getting up to use bathroom.




Alz+, have the doctors considered orthostatic hypotension? This means a person feels dizzy or lightheaded on arising quickly, due to low blood pressure.

Are you still on the beta blocker, or has that been discontinued? Are you on other meds?

If possible, measure your blood pressure when sitting and then when standing. Only do this if you can do it SAFELY.

Here is some information on orthostatic hypotension:

Orthostatic hypotension — also called postural hypotension — is a form of low blood pressure that happens when you stand up from sitting or lying down. Orthostatic hypotension can make you feel dizzy or lightheaded, and maybe even faint.

Orthostatic hypotension is often mild, lasting a few seconds to a few minutes after standing. However, long-lasting orthostatic hypotension can be a sign of more-serious problems, so talk to your doctor if you frequently feel lightheaded when standing up. It's even more urgent to see a doctor if you lose consciousness, even momentarily.

Mild orthostatic hypotension often doesn't need treatment. Many people occasionally feel dizzy or lightheaded after standing, and it's usually not cause for concern. The treatment for more-severe cases of orthostatic hypotension depends on the cause.

Read more:

http://www.mayoclinic.org/diseases-conditions/orthostatic-hypotension/basics/definition/con-20031255


Is it possible to have a visiting nurse come to your home? I think you need more eyes on you.


I have to go now. I am going to an Expo at the Convention Center. Be back later.

Iris L.

llee08032
Posted: Thursday, September 24, 2015 8:13 PM
Joined: 5/20/2014
Posts: 4408


Is it possible to have a visiting nurse come to your home? I think you need more eyes on you.

Liking Iris idea for you alz+! Heidi sounds as smart as the dogs on Lassie. Such a good girl! You need her! Please give her a pet for me! Diesel on elimination diet to rule out allergies. Feeding him boiled chicken and prescription food.