Father diagnosed with PD; no tremors, just really bad rigidity & stiffness

[Rengifo04]

My father is a 76 year old who was dx with PD. He does not have any tremors, just really bad stiffness & his joints crack all the time. He loses balance & has fallen a couple of times. My question is, can it be possible that he was wrongly dx? He's taking sinemet 25/100 3 times daily. It has helped his energy levels. I think. I see him more alert during the day. Before he would just fall asleep anywhere & wouldn't have any energy for life. I don't let him drive anymore & requires assistance getting dressed , bathed etc. Its been a struggle but he's my father... I won't give up on him.

[wifeofparky]

Tremors are not always a symptom of PD. There are many non-motor symptoms. Fatigue is one of them. If you go to parkinson.org, you can order booklets or download them for helpful information. If you want, take him for a second opinion. A movement disorder specialist is a great one to do this. They are neurologists who specialize in PD.

Hope this helps.

[Hidden]

possible that he was wrongly dx. second opinion required, its important, especially regarding his heart

[stevie3]

I don't have a tremor (yet) but stiffness and all sorts of other symptoms led to my diagnosis. I had thought it was a trapped nerve for years because I've always had back problems but my doctor recognised the signs and referred me to a specialist. I was told by my neurologist that the tell-tale sign was that I don't swing my arm on the affected side when I walk. My doctor ensured I got a second opinion, and so I saw two independent neurologists both of whom specialise in PD. If you have doubts, there's absolutely no harm in getting one.

[JohnPepper]

Hi Rengifo. To answer your question about a possible wrong diagnosis; not all people with Parkinson's have a tremor. That does nor mean that they don't have Pd. Rigidity is probably the most common symptom of Pd. but it is not always present in all Pd. patients. He can have a DAT scan to possibly prove that he has Pd. but even that isn't full proof. I would just accept that he has Pd. and do whatever you can to help him deal with it.

There are two things that I know of that help with Pd. the one is fast walking and the other is Tai Chi. Both you and he might think that fast walking is totally out of the question, but is it?

Hold his left arm securely in your right arm and tell him to stand up as straight as possible. Then ask him to place his weight on one leg and see how far he can lift the other leg straight up in front of him.. Then do the same with the other leg. Then, if you hold him from behind, and ask him to swing alternate arms up as high in front of him as he is able. Lastly, while holding his arm, ask him to stand up on his toes. If he is able to do all three of these things then you both know that he is physically able to walk, because those are the things that he is not doing.

Why is he not doing them? It is because the Pd. affects the subconscious brain's ability to move the limbs. But we have a conscious brain as well as a subconscious brain.

All you have to do now, while holding his arm, is to say to him, "Put your weight onto your left leg, now lift your right leg up a little and stick it out in front of you and place the heel FIRMLY ON THE GROUND in front of you". Then tell him to stick his left leg out in front of him, and concentrate hard on placing the left heel onto the ground". He is now walking, by using his CONSCIOUS BRAIN. Keep on calling out "HEEL, HEEL, HEEL" and he will keep walking. The moment he loses concentration on placing the next heel on the ground he will freeze. That is why you are holding him.

Now the only thing that you should both do is practice the conscious walking, every day until he is able to maintain his concentration and walk without freezing. That might take a couple of weeks but he is now on the way to getting better.

He must commit himself to walking as FAST AS HE CAN, every second day, as long as he is able, and don't overdo it. If he is only able to walk for a few minutes, that is fine.

During the first two weeks just walk for the same time each walk. But measure the distance he walks and make a written record of his achievement. Then at the beginning of every third week he can walk for a little bit longer, but no more than five minutes. Then when he is walking for one hour he has reached his goal. You will both be amazed at how well he is doing already at that stage. Then he must keep trying to walk faster and faster, recording all his distances and times.

Tai chi will help him to practice using his conscious brain for all his movements and I recommend it very strongly.

Don't give up, it is just the beginning of a recovery process.

Good luck

John

[HeartSong in reply to JohnPepper]

John, I've been reading your comments in this community for a while. I think you are on to something about the fast walking and the Tai Chi. (It's interesting to note that one is deliberately fast and the other deliberately slow.) This lady might add some music with a steady beat for her father, although it sounds like that right now, he 'd need some fairly slow music. I get music at the exact speed that I need from youtube.com videos. I'm always on the lookout for new music and new artists that have upbeat music, then I look on youtube.com to see if they have videos with music that fits my speed. (If the music has lyrics, they absolutely have to be positive lyrics, or I won't put them into my mind by listening to them.) I don't play this music while I'm walking outside because I don't have a device to play them on, but I do play them indoors while I'm jogging in place on my rebounder (mini trampoline). It is absolutely shocking how much faster and longer I can go when I use the music. (Of course, I worked up my speed slowly and safely.)

Rengifo04, it sounds like you love your father very much. He is fortunate to have you as his child. May God bless you both with strength and energy. (In response to your initial question, my neuro, a movement disorder specialist, told me that the way they diagnosed PD is that they have a list of possible, observable symptoms [something like around 10 symptoms are on the list]. If a person has at least 3 of these symptoms, then they are diagnosed as having PD. Even though tremor is very common, it doesn't have to be one of the symptoms. Still, you should get a second opinion.)

[JohnPepper in reply to HeartSong]

Hi Heartsong. Yes! It is interesting that the fast walking is good for us, but what that does is produce a substance in our brain that repairs the damaged brain cells. It is THE ONLY THING KNOWN TI MODERN SCIENCE THAT REPAIRS THOSE DAMAGE BRAIN CELLS, so why don' t the doctors tell us about it? They should all be telling us to start FAST WALKING. Perhaps they are not up to date with new discoveries.

I read about this in the British journal 'SPRING Newsletter' in 2006. That was 10years ago. It carried the report on the 1st World Parkinson's Congress held in Washington DC. In that newsletter Dr Beth Fisher's report on the effects of exercise on Pd. showed very clearly that energetic exercise improved the symptoms of Pd and fast walking was found to be the most effective.

I had been doing fast walking for 12 years before that report came out and had already been able to come off all my Pd medication at that stage.

Give it a try! What have you got to lose by it?

Good luck

John

[HeartSong in reply to JohnPepper]

John, is that substance you are referring to called "nerve growth factor"? I read that aerobic exercise increases nerve growth factor.

Why don't the doctors tell us about it? Most of them have such hectic schedules and heavy responsibilities; they have the powerful American Medical Association breathing down their collars ready to punish anyone who strays from the party line; and, honestly, their jobs must be very depressing - to see all those really sick, miserable people day after day without being able to offer them much hope. They're human beings - they get into ruts like the rest of us. Maybe we expect too much of doctors. Maybe the cure and the prevention are going to come through us.

[JohnPepper in reply to HeartSong]

Hi Heartsong. Yes! I think you are correct. A change IS coming from outside of the medical profession. I think the medical profession is controlled by the pharmaceutical industry, but I have no proof of that.

To answer your question, GDNF is one of the Nerve Growth Factors. It specifically affects Pd. It actually repairs the brain cells affected by Pd.

I so far have been unable to get any cooperation from any of the Parkinson's Organisations throughout the world and I suspect that they receive a lot of financial support from the pharmaceutical companies. Propagating the news of a way to reverse Pd and stop taking medication would not be good news for that industry.

We all have to take control of our own health and make our own decisions.

Good luck

John

[Belfort in reply to JohnPepper]

My husband was very fit before being diagnosed at 57. He is now 68 and had DBS over 5 years ago. He swims, lifts weights but most enjoys riding his bike which he goes out on daily for 1-2 hours. He does also walk around our neighbourhood, not too fast but gets where he wants to go. I am hoping you will agree that the aerobic exercise of riding his bike will also have a protective effect. he is very positive and determined not to let PD ruins his life. His worst problem is soft, inarticulate speech which I think is a result of the DBS.

[JohnPepper in reply to HeartSong]

Hi Heartsong. I am like you, in that I forgot to finish off with why Tai Chi helps Pd. Tai chi helps us concentrate on each movement, which we don't normally do. When I show people who shuffle, how to walk properly, I first have to make them concentrate on an actual movement, like planting the heel of the front foot onto the ground very firmly. Normally we don't have to think what we are doing as we walk, we just do it subconsciously. It is difficult to change the way we control our walking but once we start it becomes a lot easier.

Practicing Tai Chi helps us to be ABLE to concentrate on our walking actions.

John

[HeartSong in reply to JohnPepper]

Just after I left my first response to John, I thought of something else, hence this message. (I know I'm going off on a tangent here, so if this message would better belong somewhere else, someone please let me know.) Since music is so powerful when it comes to movement, if someone was really slow and had a hard time walking, it might be beneficial to play some slow waltz music. As you may know, waltz music has 3 beats to the measure - 123 123 123 123. The person having the trouble walking could move their legs alternately on every downbeat (beat 1) of the measure. Of course in the beginning, they would need assistance from another person (as John describes, above). I wouldn't be surprised if after a while, they'd actually be slightly swaying to the music. If anyone tries it, I'd be interested in how is turns out for them. Here is a link to 23 minutes of slow waltzes on youtube.com: youtube.com/watch?v=hLj20fb...(Not working as expected?)

[Hikoi]

The symptoms you have mentioned so far are all classic symptoms of PD. Of course we are limited, it takes a specialist examination to accurately decide. It's lovely he has your help and commitment to care for him.

[leojohn]

As others have written.....

PD takes on many forms and nothing says Parkinson's like a tremor. It is a symptom that the general public identify as the disease. There are so many other identifying factors. I read once that if a person has been identified with PD and still has a sense of smell, get a second opinion.

As well if the person responds to medication for Parkinson's then it PD.

It is good to feel confident in the diagnosis; only then can you go forward in identifying what helps.

[Moodyblue]

Since you are seeing a positive response to the Sinemet it seems unlikely that the diagnosis is wrong.

[Donzim]

my husband was diagnosed in '94 and even though he is rigid, has tremor, poor posture, all the usual things and responds to carbidopa/levadopa....he has never lost his sense of smell.

[leojohn in reply to Donzim]

That's interesting.

I guess we can throw that as a clearly defining symptom out the Window.

In summary PD is complex and varied.

Thanks

[Coblrman]

About 75% of PD patients have the tremor dominant form. The rest have the movement related form.

[WtjrBill]

It sounds like PD to me. Not everyone will have tremors. There is no test for Parkinson's - your movement disorder specialist is relying on his experience. He probably put him through a battery of tests- finger taps , toe taps, different movements, etc. Not to worry though, he didn't get it yesterday. He has probably had it for a long time. It changes over time. God bless.

Bill

[etterus]

There are 2 different types... Tremor dominate and PIGD which is postural instability, gait disorder. I'd research the latter and see if it doesn't describe many of his symptoms.

[0123]

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