Parkinson's plus or A typical

[Salgeri]

My mother was disagnosed in November of 2015 with Parkinson's plus. She does not respond well to the various meds. We have not met anyone in our area with this type of Parkinson's. She is progressing quickly. We have seen 3 neurologists and they really don't have many answers. Any advice would be appreciated.

[laglag]

Were any of the neurologists movement disorder specialists?

[Salgeri in reply to laglag]

All of them were

[silvestrov]

I am guessing the neurologists found your mother had little or no response to sinemet/madopar supplementation. Could you describe her symptoms?

[Salgeri]

She is having difficulty walking~~ shuffling and freezing. Unsteady gait, inability to write legibly, and food sensitivity. I'm concerned that she will lose her mobility soon. She is almost 74.

[JohnPepper]

Hi Salgeri. This is a long-shot. I know nothing about Parkinson's plus. Seeing that you mom does not respond to the usual Pd medications, is she in the physical state to be able to walk?

Fast walking produces a natural chemical in the brain called GDNF. GDNF stands for Glial Derived Neurotrophic factor. Neurotrophic roughly means 'Nerve Repair' Yes, our brains produce a natural repair kit for Pd.

Go to my website and contact me, if you are interested to learn more about this, AT NO COST!

reverseparkinsons.net

[Salgeri in reply to JohnPepper]

Thank you for replying. We are so perplexed with her symptoms. She doesn't walk fast and struggled to walk at all. She was scheduled to have knee replacement surgery this month, but at this point we don't feel she'll do well with the anesthesia and the intense rehab. We are very frustrated but are continuing to search for answers.

[JohnPepper in reply to Salgeri]

Parkinson's affects any movements we make, which we don't have to think about. In other words, walking and writing, among many other movements can be affected by Pd.

When your mom has had her knee surgery and she is mobile again then find our more about consciously taking control of that walking. Lokk at me website - reverseparkinsons.net to get more FREE information.

[Hikoi in reply to JohnPepper]

Parkinsons Plus syndromes are similar but also quite different from idiopathic pd. they develop differently.

[JohnPepper in reply to Hikoi]

I am busy working with a sufferer of MSA, and he lives in London. That is much worse than Pd. When he came here he came to hear me talk at a Pd support group meeting and he liked what he heard, as nothing that he had done so far had changed his situation.

When he went back home he started the fast walking, or what he thought was fast walking, but the difference with him was that suddenly he had something to do that could POSSIBLY work. He has been back to see me again since then and had another lesson on walking and he left with a grin on his face and so did his mother and sister as well, because they saw what a difference has taken place since he was here last.

He is moving better, feeling better and THINKING better.

Whether he is getting worse as fast as he was or not at all, he is living a more enjoyable life and he feels BETTER!

[Hikoi in reply to JohnPepper]

MSA is one of the Parkinsons Plus John. Yes im sure exercise is helping this mans general well being, and he feels he is doing something positive, which gives a sense of some control. Then there is also the positive power of attention and encouragement which happens whether treatment works or not.

[JohnPepper in reply to Hikoi]

How come you're not fighting with me for a change?

[Hikoi in reply to JohnPepper]

Last time i kept on to see if you ever let others have the last word John. :). I got my answer.

[JohnPepper in reply to Hikoi]

Is that good or bad?

[Hikoi]

Salgeri

That isnt a nice diagnosis to get. There are different types of Parkinson Plus syndromes and some move fast but not all. Usually they dont respond very well to sinemet which is difficult as there are no specific treatments. You may like to take a look at the PSP forum on health unlocked, they might have useful info for you.

[Salgeri in reply to Hikoi]

Thank you

[sweetgrassgirl]

I feel for you. You are not alone as my sister has the same condition but worse: As it was now diagnosed as late stage lyme. NEURO LYME tricky disease mimics many of the auto immune diseases as Parkinson's, MS, ALA, and others of the like. Not responding to anything, so progressive and the least studied. Medicine has failed with drugs are only symptomatic relief and then the dreadful side effects; Tens of thousands $$$ later, everyone scratching their heads. Drs. get rich then wash their hands when they hear LymeDisease. LymeLiterateDoctors private pay and $$$. Each of their arduous protocol takes years, again with no guarantee. Much ignorance out there I guess it's ultimately upto us to seek out info like forums such as this. I feel for you. I am the caregiver I'm at my wits end. My sister's suffering is legendary. My next thought is a detox Hospital, build up immunity, rise above the disease at the cellular level get strong again to fight is always another possibility.

[Salgeri in reply to sweetgrassgirl]

Thank you for responding. I'm sorry to hear that your sister is suffering so much. I'm sure she is grateful for you! I have not heard of Neuro Lyme~~ was it a specific blood test that finally diagnosed her with this disease?

[sweetgrassgirl in reply to Salgeri]

No...the blood tests are inconclusive(many false negatives) from what i have read they are only 20% accurate. Therefore it is said,if you have the symptoms look more at Lyme Disease, over 300,000 cases a year..(despite what medicine says)...My sister had comprehensive MORA tests and ZYTO tests (many think is quackery), however showed Lyme bacterium and other cofactors which have made it very serious. She had a bulls eye tick bite 15 years ago and didnt realize this. So it lives in you for a long time with various Lyme symptoms cleverly mimic neurological disorders, hence movement and coordination diseases more and more these bacteria take over if you dont intervene. Digestion is attacked as well..Very possibly PARKINSONS PLUS...might be.. just the same: PROGRESSIVE LYME disease.. Either way is very difficult to erradicate and synimet type drugs do nothing (after awhile)..Allopathy calls her disease MSA Multiple system Atrophy. Alternative calls is Advanced Lyme as well. We too, need divine intervention and at the moment a standstill other than immune building therapy which we need much more... its so debilitating and sad..so something else to look into. Tough with grouchy sister completely aware of what has happened to her enriched life has gone way downhill. Take care, wish i can be of more help but support ..that we are not alone jus helps us Soldier On..

[dolltearsheet]

Are you in a large city with good medical care?