Parkinsons News Today Weekly Forum Digest

Dysphasia-swallowing disorder

Feb 13, 2020 06:23 am | Shirley Cypher

Replies: 4

My husband has PD with dysphasia.  He has silent aspiration (food, liquid being inhaled with out coughing)  This can cause aspirational pneumonia. He has been in the hospital twice with pneumonia. Pneumonia is a major cause of death of people with PD.  He is working with a speech pathologist to strengthen his throat muscles.  She indicated he should keep his mouth clean through mouthwashes twice a day etc.  One of the things I find no mention of is using xylitol which is a sugar substitute that kills bacteria in the mouth including the ones that cause aspirational pneumonia.  I find a lot of information from dentists about xylitol helping prevent tooth decay but nothing about helping prevent pneumonia.  I have started making a mouthwash of baking soda,xylitol, and water.  At present mouthwash applied with soft foam brush morning and evening,  chew xylitol  gum (several brands available ice cube by hershey seems to have the most xylitol) after lunch and snacks.  you can also make candy with it.  there are recipes on line.

Medical cannabis, have you tried it?

Feb 13, 2020 04:09 am | Jean Mellano

Replies: 48

I have not yet looked into medical cannabis as an option, mainly for 2 reasons.  First, I live in NY which has additional requirements for doctors to prescribe for PD ; patient must have at least one associated condition — extreme malnutrition, severe or chronic pain, severe nausea, seizures, or severe or persistent muscle spasms.  None of these apply to me.  Also, I have heard it is most helpful for tremors which I currently do not have.    Have you tried medical marijuana and has it helped you?  If so, which symptoms?

Mini exercise bikes for exercise

Feb 12, 2020 05:00 pm | Toni Shapiro

Replies: 6

Hi,  I struggle with balance issues and I am looking to find ways to exercise that will work for me. I have had to drop out of classes because I need support.  I am a danger to myself and to anyone next to me, in front of me, or behind me LOL.  I want to continue to exercise but I need to hold on to something.  Aside from the treadmill my physio therapist suggested I get a mini exercise bike.  One that is just peddles that you put on the floor in front of your chair.  Cycle while you watch TV! I think it’s a great idea but thought I would see if anyone has experience with this and ask how it is working for them. Thank you.

PD & Dystonia

Feb 12, 2020 04:31 pm | Robert Tauber

Replies: 1

I

I have had this hideous disease for about 8 years. Now After taking Levodopa/Carbodopa type drugs I was diagnosed with cervical dystonia. Starts in my shoulder then spreads to my neck/throat.  Mouth cranks open and tongue flops out. UGH!!!! Taking Baclofan and Botox shots with minimal relief. Any body else experience this?

Cheers,

Bob

Have you considered getting a service dog?

Feb 12, 2020 01:20 pm | Mary Beth Skylis

Replies: 2

I’m infamous for attempting to convince everyone to get a dog. My love for the animals is unmatched. But, recently I’ve been thinking about how dogs love us back to health. I read that service dogs can assist with the management of Parkinson’s symptoms like freezing and imbalance. And I’ve wondered if it’s time for my Dad to get a service dog.

Have you considered getting a service dog? What are your greatest concerns regarding getting a pet? If you have a dog (or a service dog), have they made a difference in your life?

Have you tried LSVT BIG therapy?

Feb 12, 2020 01:16 pm | Jean Mellano

Replies: 4

LSVT BIG is a standard, evidence-based protocol provided in individual one-hour therapy sessions and governed by physical and occupational therapists certified in this program.

Here is a link to an article that talks about how LSVT BIG is helping a PD patient:

‘BIG’ treatment helps slow Parkinson’s effects

Have you tried LSVT BIG?  Has it helped you? How long and how often have you been doing it?   If you havent tried it, is there a reason why?  I would love to try it, but there are no therapists certified in this technique near me.

Your Amantadine Experience?

Feb 12, 2020 12:14 pm | Cemal

Replies: 19

I am 44 years old. I have been fighting parkinson for 1 year.

I started with azilect for 1.5 months 6 months ago. I have not seen any benefit.

But when I left azilect, my complaints increased and started tremors and shaking on my right feet when I had no tremors.

And now, Bradykinesia in my right arm that impressed me the most. I am young, I have difficulty in doing my job and profession.  I don’t want to start levadopa/carbidopa  for resistance in the future. I avoid and afraid these treatments.

Now my Neurologist recommended amantadine for my symptoms and I’m afraid it would make me worse. Anybody can tell me experience about amantadine using in PD .

Wondering About Azilect?

Feb 12, 2020 08:39 am | Bob Glisson

Replies: 7

I keep reading negative stuff about Azilect.

If you are new to PD and were prescribed Azilect, you may have some questions about it. I know I did.

I was prescribed Azilect about 5-1/2 years ago, when I was first diagnosed. I began treatment, and like most people, I didn’t feel a thing. In my mind, I might as well have been taking a Flintstones vitamin for all the “beneficial effects” I was feeling. Nevertheless, I stuck with it, with the hope that it might be doing something deep inside that I wasn’t aware of.

5-1/2 years later I’m still Stage 1. My right hand tremor (which was my original symptom) is getting worse, but most people don’t notice it. I’m a little stiffer, but not bad. I still party, still dance, still play guitar and sing, still do 95% of the driving when we go out. In fact, until I tell people, they don’t know I even have a disease.

So, is it the Azilect? I have no idea. But I’m certainly not going to quit taking it just because I don’t feel any miraculous effect from it. Yes, it took me a few weeks to adjust to it (as I recall), but it’s a small price to pay for what I THINK I got from it all these years later.

By the way, I get it from Canada for $300 for 90 days. Originally I was paying $300 a MONTH to get it from the USA!!!!! Dang, I’m really surprised I was willing to pay that much, but I’m glad I did. The Canada site I get it from is Discount Med Direct, 941-355-7887, out of Sarasota, Florida. There might be other places too.

If you have anything you want to ask me, go ahead. I have NO “dog in the race”, so to speak, and don’t care if you don’t want to take it. I just think it MIGHT be why my progression has been slow……

Social media and Parkinson’s

Feb 11, 2020 01:20 pm | Ally

Replies: 0

I’ve seen a few people comment in this community that going out in public post-diagnosis can sometimes be anxiety provoking. This, in turn, can lead to a lot of social isolation. Is this something you’re experiencing or have experienced? Has social media helped you stay connected to people and events when you don’t feel comfortable going out “in real life”?