[Russ W.]

I was diagnosed with PD about 3 years ago. Not sure how long I’ve actually had it. I did not know or understand the symptoms for a while. I had DBS surgery about 10 months ago. This is what I have learned or noticed. Mine seems to require almost constant adjustment. (Every 3 or 4 days.) I often have to choose between walking semi-normal or tremors. They are close, it seems, but I can’t find a sweet spot for both. I was told that the main issues that DBS helps with is tremors, muscle rigidity, and slow movement. Anything beyond that is a bonus. It does not stop the progression. I was first introduced to DBS by a friend that had it 7 years ago. Technology has changed a lot since then. Just like almost anything…all doctors are not created equal. That comes straight from the manufacturer of the DBS unit. Do your research. Ask the manufacturer who does a good job and who is still learning (getting better). It might e worth a little travel. (Of course that is for those who have not already had it.) For me it was a game changer. It’s not perfect or 100%, but it is significant. I hope to be able to get another 10 years of a decent life style out of it. Time will tell. Hope this helps. Good luck.

[Russ W.]

Hello Simon,<div> I have DBS surgery 2 months ago. In the process of adjusting the first time they had turned it up too high and I was unable to talk. Actually it even distorted my face a little bit. If someone is unable to talk I would suggest turning it down.</div>

[Russ W.]

YES, this is a common problem I used to struggle with. I have solved it with medication. I take three pills every night before I go to bed. 1) Finasteride 5 mg. 2) Oxybutynin 5 mg. 3) Amtriptyline HCL 25 mg. I can’t say that they are all necessary to do the trick or which one does better than another. All I can say is that I sleep through the night and do not wake up in the morning needing to run to the bathroom. The same goes for needing the rush to the bathroom during the day. As expected you need to consult your medical professional to determine if these medications are right for you.

[Russ W.]

Yes, I have severe back pain. I’ve been through 7 rounds of physical therapy with no relief. I assumed that my back pain was from a work injury. A couple of weeks ago I saw my pd Doctor. I asked her about back pain associated with parkinson’s. Her response was that it was not generally an issue. I have to get out of bed anywhere from 2:30 in the morning till who knows when because of back pain. I slept on a memory phone mattress for almost a year. I finally got rid of it and my pain seems to be doing a little better. Unfortunately, I am a side sleeper. That might also be adding to the problem. I can only stand for about 5 minutes. I can only walk for about a 1/2 a block before my back tightens up. However, I can go 20 to 30 minutes on a stationary bike or a treadmill by holding on to the handle and getting the weight off my back. I use a Walker around the house, not because of my pd instability, but because of my back. It generally always starts in my lower back but slowly progresses up my spine across my shoulders and up into my neck. I can only handle about 10 minutes in a kitchen chair. To ride in a car I have to recline the seat quite far back. I have multiple painkillers that I use for it. Everything from Ibuprofin and Tylenol to opioids and everything in between, depending on the severity of the pain. I have found that 1 to 1 cannabis helps with my back pain as well as my tremors. I only take a quarter or a 1/2 at the most of a chewy which seems to be plenty. The only problem seems to be that it can take up to 2 hours before it starts working. No, you are not alone. I hope this helps. Good luck.

BTW. I take 600 mg of gabapentin At Night to help me go to sleep and stay asleep.

[Russ W.]

CBD by itself , not much effect. WITH THC, yes. I was against it at first. In fact I voted against it when the option came to my state. It took my Doctor over a year to talk me into trying it. Thank heaven came here anyway. It helps me with shaking, muscle cramps and overall pain. It also helps me sleep. I use a 2:1 CBD:THC. I try not to take it every day. I end up taking it about 2 to 3 times per week. I would advise experimenting with ratios. I have tried everything from 4:1 to 1:1. Good luck.