helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Sign in to follow this  
Followers 0
Sandy Zajdel

New here

10 posts in this topic

Hello everybody, I am 57, I was diagnosed in August 2016. I had been having symptoms since July 2015, it all started with my neck hurting and tremoring that started in my left hand. Have had many visits with two different neurologists, my first medication to try was Artane, this had absolutely no effect on the tremor but put me into a black hole of depression and fear anxiety and crying all the time. It was horrible after going off of that I was then started on Sinmet, after having an appointment with an MDS my dosage is now up to two tablets three times a day. It has had some affect on the tremor but I noticed now I have a constant muscle movement in my left foot and toes which has made my foot extremely sore. I was told by the MDS that I have what's known as tremor dominant Parkinson's. Has anyone else heard of this and any advice for the pain in my foot.

Edited by sandal

Share this post


Link to post
Share on other sites

Hello and welcome the club you never wanted to Join.

 

I have heard of doctors using the term tremor dominate vs rigidity dominate and so forth. My MDS has never used those term with me.

 

I have found that wearing good shoes at almost all times has helped with my sore feet. No more cheapo wal-mart shoes for me. I am taking 1.5 pills 3 times daily and this has covered my symptoms very well. I have a tremor but it is not terrible and only shows when I am tired and the pills are wearing off. You could ask you doctor about using Azilect, it has helped me not have highs and lows throughout the day with dosing and in some cases I have heard people can lower there dose of sinement slightly. It is not an agonist so the side effects are not as problematic. Some people do not react very well to it.

 

The other suggestion is exercises. I am not talking major body building but make sure you are walking 9k to 15000 steps a day. Getting up an moving around. Staying active. I have noticed the more I sit the worse I feel. Patriot on our forum here uses only exercise to help maintain his symptom.

 

The unfortunate part is, now that you found an MDS it will take you a good year to get your medications figured out and dialed in to what works for you.

 

My suggestion is get as educated as can about PD. It will help when discussing symptoms and treatment with your doctors

 

Blessings

2 people like this

Share this post


Link to post
Share on other sites

Thank you for the advice Adam! I am definitely trying to get myself educated with everything regarding PD though sometimes it feels completely overwhelming. I'm certain diet and exercise will help, I'm just worried about going back to work at a desk job. My symptoms seem lessened when I stay busy.

 

Based on things that I have read, I understand that it will take a while to get medication sorted out properly.

 

Just trying to stay positive.

 

Sandy

Share this post


Link to post
Share on other sites

Hi Sandal,

I am interested in knowing more about your left foot movement.  Is it tremor or just an irresistible urge to move your foot.  I also have developed this problem and have been trying to figure out if it is tremor, dyskinesia or restless leg syndrome.  For me it occurs at rest only and almost always in late afternoon/evening and sometimes at bed before I go to sleep.  I can stop it at will but if I don't concentrate on staying still it will resume movement.   

 

You are one hundred percent right about symptoms "disappearing" when busy.  If I had the energy to keep moving all day I think I could throw away the pills!  Happy New Year, Gardener

1 person likes this

Share this post


Link to post
Share on other sites

Welcome.  Pull up a chair, as we wonder what ever happened to a cookie maker/greeter.

 

Think of the forum as a big campfire down at the beach, never know who shows up some weeks, but group of friendly folks all on the same journey.

 

One book that I love is Dr. Ahlskog's "The New Parkinson's DiseaseTreatment book" Second edition  link

 

Still remember the boardwalk at Santa Cruz as a kid. Summer vacation place, we'd go down for a week every summer. Great memories, but haven't been back in years.

1 person likes this

Share this post


Link to post
Share on other sites

Welcome - so glad you found us :) I'm new to all this as well and thankful for the support here. It's starting to feel like "Cheers" where everybody knows your name. My biggest challenge is to keep moving - I can't believe how much difference exercise makes!

 

Chava

1 person likes this

Share this post


Link to post
Share on other sites

Welcome to the forum.

 

PD is at first an overwhelming diagnosis. I haven't heard the term tremor dominant used, but that doesn't mean anything.

 

There's certainly a lot of support and information amongst the group. Can't say we all agree all the time…..but who does?

 

Each of us has a personal path to walk so it hits us each a bit differently.

 

Sinemet and definitely exercise are the best prescription I've found. Daily exercise. It can run the range of cardio vascular to low impact stretching. It's all good. 

1 person likes this

Share this post


Link to post
Share on other sites

Thank you all so much for the kind and supportive words. All of this is completely overwhelming and it is nice to know that there's a place to go and ask questions and feel like other people will understand what you're saying.

 

Gardner... The foot issues are really the need to move my toes constantly which has caused the top of my foot to feel like it's been stomped on by an elephant! I wouldn't say it's really a trem but more of the constant need to move it. I notice it almost all the time with some rare moments of Non movement.

 

Yes I agree, if only I had the energy to stay busy all the time it would be much easier. Unfortunately I also have Hashimoto's autoimmune hypothyroidism. This takes a strain on a lot of my energy and causes fatigue which makes the PD now even more challenging.

 

Looking forward to getting to know all of you on this forum. May 2017 be kinder to all of us!

Share this post


Link to post
Share on other sites

Thank you all so much for the kind and supportive words. All of this is completely overwhelming and it is nice to know that there's a place to go and ask questions and feel like other people will understand what you're saying.

 

Gardner... The foot issues are really the need to move my toes constantly which has caused the top of my foot to feel like it's been stomped on by an elephant! I wouldn't say it's really a trem but more of the constant need to move it. I notice it almost all the time with some rare moments of Non movement.

 

Yes I agree, if only I had the energy to stay busy all the time it would be much easier. Unfortunately I also have Hashimoto's autoimmune hypothyroidism. This takes a strain on a lot of my energy and causes fatigue which makes the PD now even more challenging.

 

Looking forward to getting to know all of you on this forum. May 2017 be kinder to all of us!

My wife has Hashimoto's.  We didn't know until recently.  She struggled with fatigue and frustration a lot while I was declining with my unknown PD.  As a pair, we were miserable.  I can imagine that put together with PD is pretty rough.  Sorry to hear it.

1 person likes this

Share this post


Link to post
Share on other sites

I read that specialist use two main categories: Tremor dominant and PIGD (postural instability, gait disorder) dominant.

We can live with PD, it is a fine juggling act. Many factors are competing to relieve or aggravate symptoms. It is not uncommon to take up to one year to reach a level of equilibrium.  It is important to be well informed and not to speculate at how bad it can become and how fast this will happen. The future causes a lot of anxiety and the past brings on nostalgia. The present is where you should aim to be.  Look at the positive side of things and life, it is a lot more beneficial than looking at the nasty, negative side. Exercise is part of the treatment, not an option. Reduce stress and obligations as much as possible and listen to your body when it is telling you that you need to rest. Most PWP experience cramping or pain at some time or other, some of it is relieved by medications some of it is caused by medication. Exercise and stretching often helps. It is better not to chase symptoms, they come and go, some come and stay, others never reach you. Acceptance is very critical to living with PD.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0