I have a great DMS doctor but the Parkinson’s is winning and it’s been tough.Lots of stiffness and muscle pain plus tremors in hands and back muscles.Thanks for the video
When I was first diagnosed I saw a general neurologist. "Yep, looks like you have Parkinson's disease. Take this and come back and see me in 6 months." What, that's all there is? Moved on to a well known PD center in Mpls. MY MDS is regarded in the medical community as the queen of the MDS community in the area. If she retires I'd be devastated. I feel your pain.
Jeremy, NEVER GIVE UP! That being said, a few months ago I discovered that there is a Doctor of Physical Therapy school here in town. They have a very active program in treatment of PD. I attend weekly RSB classes. I am currently attending a Falls Prevention class (ten sessions). Today I just attended the first of three sessions of Pro Bono evaluation and treatment. They will soon begin a Rock Climbing for PD patients that I want to participate in. In other words, there’s more than one way to skin a cat. Maybe I’m crazy. Film at 11! 😂 ✌🏼❤️3️⃣0️⃣5️⃣
Bro, that sucks. Move to Canada, lots of MDS. Im sure the pump will be covered as well. Dbs is covered. I hope everything works for you. Keep fighting, maybe look to the nearest city for a MDs.?
For those wondering, MDS= Movement disorder specialist, they are a step above a neurologist. If I lost my MDS, I would be devastated. I’ve had this guy for four years and we get along great. Only thing I can suggest Jeremy is maybe going to one of the bigger cities, I know Chicago is a hike, but does your insurance cover out of network providers?
Hi Jeremy, sorry you lost your doctors, that can be very frustrating. I haven't seen an MDS in almost two years. I don't really see the need at this moment to check in with one at this time.
I have a very good MDS and check in with her every 6 months. When I was first Dx’d I thought the world revolved around those appointments (which were every 3 months at first). Now, I realize it’s kind of the same drill every time, so they can get to the UPDRS motor score. At most, the meds are adjusted a little and I’m on my way. I now realize there’s only so much they can do.
Sorry to hear, JayMac but I know what you mean. I just got a referral to the WashU Parkinson’s Research Center right near you in STL….have you been there? I went a couple of months ago and I really liked it so far.
Wow, two doctors at the same time. I have a feeling you will find a couple of excellent doctors. My MDS is great. I might be starting a new approved medication that replaces Rytary. It’s called Crexont. Since it’s new it will probably cost a fortune.
You may hear something about a new treatment from an MDS, however you're just as likely to hear about it from a friend within the PD community. Still, it's hard to break in new doctors you never know if they're going to listen to you, you don't know how much experience they have, and since you only see them every few months it takes time. 😎🌴
Finding and keeping good doctors can be a challenge. I have a neurologist. Most PD patients here go to Charleston or Savannah to movement specialists. Discussing it with my primary physician next month. I’ve run into affordability problems with medication and physical therapy. Is there an agency or something that offers help to Parkinson’s patients?
Dude! I've lived in Denver for 12 years but am a born and raised STLer (Ladue HS, if you were going to ask). I'm a three year parkie (first year was a misdiagnosis, Years two and three were correct. I am so sorry to hear about your challenges, But I'm puzzled that with BJC, Mercy and all the other hospital systems in town that there aren't any other MDSs. Do you need help doing a search? I'd be glad to help.
You looked fantastic on this video. You had no symptoms. Is an DMS doctor a neurologist? The neurologist how treated me first left the surgery. He was so excellent and I felt so good after the medication. So I had to look for an other neurologist specialised in PD. I found one but 70 km away from home. I am still aloud to drive a car so it is no problem for me. Don't give up hope. Wir in good old Germany sagen"halt die Ohren steif"
I have a great DMS doctor but the Parkinson’s is winning and it’s been tough.Lots of stiffness and muscle pain plus tremors in hands and back muscles.Thanks for the video
Have you considered DBS?
Parkinson’s always wins in the end, unfortunately. We just have to keep moving. Thx, Linda!
Sorry to hear your docs have left. I hope you’re able to find a good neurologist. Keep your head up!
I think I am going to make an appointment with the neurologist who diagnosed me almost 12 years ago. I really liked her.✌️
do it!
When I was first diagnosed I saw a general neurologist. "Yep, looks like you have Parkinson's disease. Take this and come back and see me in 6 months." What, that's all there is? Moved on to a well known PD center in Mpls. MY MDS is regarded in the medical community as the queen of the MDS community in the area. If she retires I'd be devastated.
I feel your pain.
Sounds like you have a great one!
Jeremy, NEVER GIVE UP! That being said, a few months ago I discovered that there is a Doctor of Physical Therapy school here in town.
They have a very active program in treatment of PD. I attend weekly RSB classes. I am currently attending a Falls Prevention class (ten sessions). Today I just attended the first of three sessions of Pro Bono evaluation and treatment. They will soon begin a Rock Climbing for PD patients that I want to participate in.
In other words, there’s more than one way to skin a cat. Maybe I’m crazy. Film at 11! 😂 ✌🏼❤️3️⃣0️⃣5️⃣
Go get some, my brother!
Bro, that sucks. Move to Canada, lots of MDS. Im sure the pump will be covered as well. Dbs is covered. I hope everything works for you. Keep fighting, maybe look to the nearest city for a MDs.?
Canada is looking pretty good right now since the election.
For those wondering, MDS= Movement disorder specialist, they are a step above a neurologist. If I lost my MDS, I would be devastated. I’ve had this guy for four years and we get along great.
Only thing I can suggest Jeremy is maybe going to one of the bigger cities, I know Chicago is a hike, but does your insurance cover out of network providers?
No. I am probably going back to the neurologist who originally diagnosed me. Thx, Tom!
Hi Jeremy, sorry you lost your doctors, that can be very frustrating. I haven't seen an MDS in almost two years. I don't really see the need at this moment to check in with one at this time.
I don’t know if I need one either as I already know my options. Thx, brother!
I have a very good MDS and check in with her every 6 months. When I was first Dx’d I thought the world revolved around those appointments (which were every 3 months at first). Now, I realize it’s kind of the same drill every time, so they can get to the UPDRS motor score. At most, the meds are adjusted a little and I’m on my way. I now realize there’s only so much they can do.
So true! All they can do is recommend treatments. The rest is up to us.✌️
Sorry to hear, JayMac but I know what you mean. I just got a referral to the WashU Parkinson’s Research Center right near you in STL….have you been there? I went a couple of months ago and I really liked it so far.
I was originally seeing a mds at Wash U, but his availability was very limited.
Losing my GP of over 25 years to retirement in March. His office is literally 2 mins from my house and there was never any waiting. It sucks!
Damn! That’s tough!
Wow, two doctors at the same time. I have a feeling you will find a couple of excellent doctors. My MDS is great. I might be starting a new approved medication that replaces Rytary. It’s called Crexont. Since it’s new it will probably cost a fortune.
That’s the thing about new drugs. Can anyone even afford them? Thx, Tim!
You may hear something about a new treatment from an MDS, however you're just as likely to hear about it from a friend within the PD community.
Still, it's hard to break in new doctors you never know if they're going to listen to you, you don't know how much experience they have, and since you only see them every few months it takes time. 😎🌴
So true! Thx, Stacey!
Finding and keeping good doctors can be a challenge. I have a neurologist. Most PD patients here go to Charleston or Savannah to movement specialists. Discussing it with my primary physician next month.
I’ve run into affordability problems with medication and physical therapy. Is there an agency or something that offers help to Parkinson’s patients?
There might be. Either way, being ill is a real buzz kill!
Dude! I've lived in Denver for 12 years but am a born and raised STLer (Ladue HS, if you were going to ask). I'm a three year parkie (first year was a misdiagnosis, Years two and three were correct. I am so sorry to hear about your challenges, But I'm puzzled that with BJC, Mercy and all the other hospital systems in town that there aren't any other MDSs. Do you need help doing a search? I'd be glad to help.
Thx for the offer! But I will probably go back to the neurologist who diagnosed me. Not an MDS but I really like her.😎
You looked fantastic on this video. You had no symptoms. Is an DMS doctor a neurologist? The neurologist how treated me first left the surgery. He was so excellent and I felt so good after the medication. So I had to look for an other neurologist specialised in PD. I found one but 70 km away from home. I am still aloud to drive a car so it is no problem for me.
Don't give up hope.
Wir in good old Germany sagen"halt die Ohren steif"
vielen dank, mein Freund aus Deutschland! Keep your ears stiff! I love it!
Hey my friend. Do you hear of any Parkinson’s patients with neuropathy? Painful
Yes, I have! Fortunately, that is not something that I deal with.
Schnucks man
Yes, sir!✌️
Gregory W.
~100 - 1 subs to go!
I am creeping up on 2000!
No doctors yet
Get one sooner rather than later would be my advice. I was so miserable for years until I got my meds.✌️