Hello to all. We waited three months to get into a Neurologists office for first evaluation. Doctor said MRI and blood tests were "normal" - but he also said hubby is showing signs of cognitive decline and early Parkinson's. I see a lot of the PSP issues, and my gut says this is such a sneaky disease, we just have to wait and watch. The next part is the Neuropsychology visit- which we found online at home introduction to, so we'll road test that before he goes for appointment. I'm just really concerned about his driving because his upper body and shoulders and head are stiff. His eyes are bulging more than ever and his eyelid sticks half way , as he talks he mumbles or jumbles his words. Good days and bad days with occasional drooling. 3 falls since May 31st. None witnessed, so I don't know if he fell forward or backward. Trouble doing simple tasks.
He can't take any PD drugs because he had melanoma history. The trouble is, we'd like to try cannibis but we need a dx and it takes so long to get into any of these specialists.
Anyone else going through this? Ideas?
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Debspottery1
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My hubby takes canibis everyday, we got it from Holland and Barrett and believe me it works. His speech is fluent once he takes it. His posture is better and walking lots better instead of shuffle.
Thank you. We will forge ahead for cannibis and hopefully find it improves movement and dexterity. He's a guitar player, so he's thinking his arthritis is really bad, but his whole body is stiffening.
As a follow up to this post- we did manage to get the approval for medical cannibis, and have been using the CBD oil - they work together for the stiffness, balance and speech issues. The CBD can make him more tired, where the Vape pen cannibis seems to give him energy. He has been making choices which have caused more falling. I don't know what has brought this on except that he says he thought he was using good sense, but after getting into trouble or falling, realized he had not used good sense. Very frustrating for me, as it feels he's just being willful at times, or afraid he's not being strong enough to handle normal life issues. I've had to take over finances, mowing, scheduling, and normally must check up on him to make sure he's locked up the house at night, or returned tools to proper places. He used to be very tidy and now is wearing clothes that are torn or dirty, so I remind him to change if he looks untidy. His eyes are off- one drifts to the side, and one has a lazy eyelid. He will sometimes have a raspy or wheezing breath, and he drools without realizing it. The falls have increased and he will fall forward or sideways normally. He's a big man with a big belly- so his weight throws him forward. His head and neck are bent forward, and he appears to drift off and close his eyes frequently all day long.
As I said, the CBD and Vape of a strong cannibis do help, and we had to experiment with different strength and how to use the Vape pen properly- as he was burning through too fast- and had the pen up to highest setting.
It's all a learning. But I see constant degradation of life skills nonetheless.
Diet is important- He is a junk food addict- always has been - so he will buy himself stuff I don't keep in the house- and I find the boxes and wrappers. I realize he will not listen to me and change this habit, so I do the best I can. I admit I am angry as well- as I will be the one who is left with the consequences of his bad life choices- another thing to sort out - as we deal with how this disease changes our life and the plans we had. Even grandkids feel uncomfortable as they notice the changes. Friends try to be helpful, but in all honesty, when you are living with this 24 hours a day, no one can really grasp the impact. I'm a strong person and I keep going on, and I take my breaks to keep my sanity.
I’m really sorry that you’re having such a difficult time with this dreadful disease. What I’ve come to understand is that the man I once knew is no more. Since he cannot communicate verbally with me anymore, I figure that his mind doesn’t communicate well with his own body either. He doesn’t set out to fall. His mind believes that he can walk and then he’s surprised, as are you, when he falls. It’s the same thing about driving. He thinks he can drive but his body isn’t receiving the necessary commands in which to do so. Your frustrations are real and with good reason. I think there are stages that we all experience, denial, anger, sadness, the list goes on and on and on. I found a way to cope by telling myself that hubby’s brain has shrunk, which is true. He’s confused all of the time. So, I try to remember that he doesn’t set out to fall, he doesn’t know any better and he can’t help it. He’s not trying to retaliate some sort of unwanted behavior to be spiteful, he honestly thinks that he can still do things that he’s always been able to do. He really shouldn’t be driving now so hide the car keys if you haven’t already. Smoke something for me because I could really use some cannabis right about now 😂 You aren’t alone. We’ve all been in your shoes.
Hi. Thanks for your confirmation and explanation. My brain isn't fully aware that his brain isn't fully aware. LOL. You're right about going through the stages. I'm usually very steady and logical. This stuff just makes you think "what the hell???" He is being more honest with himself about his capabilities, so we had a talk about his driving today.
He's not ready to give up yet- but he's listening to my concerns now. The other great thing about the cannibis is the pain relief - It makes a big difference. We watched the video Ride with Larry about how the PD meds can actually create problems after years of use- and since we watched his dad go through this- we decided the meds weren't worth all of the risks. I'm so glad there is real help from people who live this every day- doctors may educate themselves on PD and PSP etc., but they really don't understand what it is to live with and lose a person bit by bit daily. I have faith, and I pray for strength. We try to laugh too- but inside we're afraid of the unknowns. I pray for those who deal with this, for their families.
I love it! “Your brain isn’t fully aware that his brain isn’t fully aware”. LOL! And “what the hell???” So true! Thanks for saying that. It made me smile.
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