I got really upset yesterday regarding my physical limitations with PD. I wanted to go out for a walk, needed exercise to help we with my PD symptoms. I suffer severe chronic bilateral hamstring muscle spasms with severe chronic right leg sciatica. Not sure if the pain is secondary to the PD or the Spondylolisthesis I have with severe stenosis. I don’t often get a chance to want to go out and walk. I’ve been mostly housebound for the past six months And very much grieving the loss of quality-of-life. I live in San Diego and we have been requested to wear a face mask when out in public.
I had three face masks at home each with two strands of elastic that go up and around the back of the head. I spent an hour trying to get one of the mask to work but with my tremor and decreased dexterity I could not get one to work. I then tried making a no sew mask posted on YouTube but without success. Eventually I managed to make a mask using a bra padded cup and attaching elastic to go over the ears with safety pins. Took me 30 minutes to work with the safety pins.
I was diagnosed with PD ten years a go. CL meds do nothing to help the symptoms, If anything it makes the tremor worse and gives me dyskinesia. I take Amantadine for the tremor, but that doesn’t seem to be that effective. I have taken Mannitol for five years, HDT 500 mg for three years and BioCult probiotic for three months.
In the past I have taken Selegiline, Ropinerol and Azilect but had side effects and little benefit.
The PD symptoms overwhelm me and unable to cope and depressed I retreat to lie down.
My quality of life is poor as I struggle to do most activities with the chronic pain and decreased use of my arms.
Seeking words of wisdom and support.
Written by
Shaky-hand
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The mask is intended to keep you from infecting others with your coronavirus that you already have or expect that you may have. A mask is not intended to protect you from acquiring coronavirus from others. The authorities have made these two aspects quite clear repeatedly from the beginning... thus strongly implying if not meaning outright that the mask you wear is because you already have the coronavirus and only wish to stop others from getting it from you. So you can wear any kind of mask you bloody will like, including a party mask, Arab women face cover, American West cowboy neckerchief, cloth covered dog muzzle, your grandmother's knitted Afghan, cheesecloth you picked up at the local auto parts store, pillowcase, or your old socks after you have finished smoking them.
I suppose in a pinch you could wrap several wands of toilet paper around your mouth and it would work, assuming you could get them to stay up there.
It also probably will help somewhat if you just simply took a rag and stuff it in your mouth, the only serious problem left being what comes out of your nose, for which it might possibly help to add a couple of nose plugs to this latter adaptation...
Or just tell people you tested negative, and thus have no need to wear a mask... because honestly, even testing negative wouldn't matter, you're being able to pick up the virus immediately thereafter or having had the virus already and simply at a lower threshold than the typically insensitive test could detect in the first place.
Don't drink the lemming juice (stress), (koolaid). Your mask is for when you believe you are a risk to others, or if positively ordered to by local authorities wielding criminal consequences. If you've had it and recovered, claim you are shedding rescuing antibodies and are thus saving lives, as likely as any other assertions being thrown round for fun , profit, or anxiety relief.
People in the neighbourhood have been posting about how upset they are when they see someone without a mask. I went out briefly today and saw five people, only one was wearing a mask. I was trying to consider my neighbours and not upset them. If I was sick I would self quarantine for seven days or until I was fever free.
I will go out without a mask unless they make it mandatory.
Please practice deep breathing and the best one is the Hindu Yogic Pranayama. It really works. Today morning I could not open my laptop and connect my headphones. I did the Pranayama and amazingly enough, I was ready to go in minutes.
Thank you for this link. I use to practice yoga for over 20 years but the PD took attending classes away because of the tremor, being slow and not able to physically perform the asanas. I do what I can each day but didn’t think of the breath work.
Thank you for your consideration. I worked full time plus as an Occupational Therapist for six years after diagnosis but I woke one morning with back pain in 2015 and it never got better, just worse. I was depressed at work struggling to hide the PD and in pain. Giving up my career was extremely hard and only added to the long list of thing PD has taken from me.
I manage to be able to do most things with a struggle but living with chronic pain is tough. I do have some pain relief windows when I can wash dishes, do the laundry, do some housework or take a shower, or cook a meal, the highlights of my day.
I am grateful that I can walk and have fairly good balance and my PD appears to be fairly slow in it’s progression. In some ways I can do more than I did four years a go.
Hi Shaky-hand, you inspired me,with your post above.That you were able to work six years post diagnosis,as an OT. I am roughly 5 years post diagnosis,and could only muster to work additional one year post diagnosis,as I was pinned down with anxiety.I also lost my Job as a PT,still searching for any rewarding remote job that I can do from home,but with no luck.I can relate to your job loss due to this dreadful disease,I haven't being able to get over the job loss.How do you cope with the dystonia pain? Have you ever experienced any pain,when your C/L is wearing off? I do get back pan,and left arm and leg pain,whenever my C/L is wearing off.
I grieved the loss of my career, which I loved, for at least 18 months. I barely left the house other than for grocery shopping. I was so depressed I wasn’t suicidal but did not want to live the life I was living. I was also grieving the loss of ability to dance, perform in the choir I sang in, perform in drum circles and enjoy my sculpting. All taken from me by PD.
I had terrible anxiety. I didn’t want to be out in public because I was embarrassed about my tremor. I am still embarrassed about my tremor when it is bad. I participated in a clinical study using distant Cognitive behavioral therapy for people with Parkinson’s. It helped me get through the very dark period.
I take Tylenol 4 three times a day for pain with Ibuprofen as needed. I do a lot of stretches and some strengthening.
I do not take CL. The pain is poorly managed. I spend a lot of time lying down when the pain is bad or the tremors get me down. I have no pain when lying down and my body becomes still.
Hi Shaky-hand, I am sorry that the benefits of C/L,did not outweigh the side effects for you.Did you get dyskinesia from C/L? And,are you on any other non-dopamine drugs? I know everyone reacts to drugs differently,but did you get a MDS to assist you with managing the C/L ,so you get the most benefit ,while you were on it? I am a non-tremor dominant,and I do lay in bed too,whenever I am having PD pain,and I do stretch my spine by hyperextending,during rigidity. I also have a portable TENS machine,for treating my back pain,sometimes.I try to avoid taking analgesic pills,to prevent any long term complications.
Strangely enough I had dyskinesia On day three of taking the first dose of C/L. It was in my left leg the only limb that was not affected by PD. I stopped taking it after two months because the side effects were getting worse, and my symptoms at that time were mild.
I have tried C/L many times since and now experience dyskinesia in the left leg on the first dose..
I took Selegiline for many years but tested positive for Methamphetamines on a drug screen. Selegiline metabolizes as a methamphetamine. Since I started taking it my weight dropped from 115 to 94 lb at 5’ 2” and I could not put on weight. I stopped taking Selegiline. I am very slowly gaining weight.
Ropinerol gave me Afib with SOB walking up a small hill and was not helping the symptoms.
Presently I am taking Amantadine for the tremor. It appears to help but more on Some days than others. The problem is it appears to cause blurred vision and a rash on my legs so I’m not so sure if I will continue with this.
I am working with an MDS but because I do not take medication I only get to see her once every two years.
It is the pain especially the sciatic symptoms daily that ruin my quality of life. I do have spondylolisthesis, grade II, Unstable with severe stenosis. I will get a TENS unit. Do you use. NMES?
No,I use just the TENS unit for treating my back pain. I could see you have tried many medications. How about supplements? I am looking for an alternative that will relieve the pain. Some people have suggested medical marijuana,but I am worried about its side effects,especially addiction.
I’ve tried many ‘natural’ pain remedies with minimal success. DLPA triggers the endorphins in the brain. Turmeric or it’s active ingredient curcumin. CBD tinctures and vaping. The non psychoactive cannabanoid from Hemp.
I tried a marijuana candy and only sucked on it for five minutes and spat the remainder in the trash. One hour later I was uncomfortably high with a rapid heart rate, restlessness and hallucinations! I didn’t sleep a wink and was scared to death. You need to be able to control the dosage and your flying blind with ingesting marijuana. I tried a tincture that was a 1:1 ratio of CBD and THC but found that even one drop was too strong, I am not wanting to get high. I plan to try a tincture with the ratio of 1:5 THC to CBD.
I personally do not believe it is more addictive than alcohol or nicotine and it depends on the Individual’s personality. If you have an addictive personality then you are at higher risk.
I also use a Kailo patch for pain. Not sure if it helps but I wear it daily. It is meant to be nano technology and cost $120 but I think it will last years. I tuck it into my pants covering my low back.
One thing I heard about but I cannot get is a herb from Indonesia called Kratom. They have banned it in San Diego. It’s a natural opioid. There is a documentary on Netflix about it.
Good luck with your pain management it is miserable to experience daily pain.
I can imagine the frustration and how upsetting this would have been. Now nearly 12 yrs diagnosed I cant imagine coping without medication. Carb/lev seems to increase my tremors too but long acting c/l has overcome most of that problem, along with amantadine and pramapexole (both help with tremors). Are your hamstring muscle spasms dystonia?
The doctors suspect the Hamstring pain is related to spinal stenosis. It does suddenly attack with certain movements. Baclofen, muscle relaxer did not help and appeared to make my Bradykinesia worse. I think I have mild dystonia of my feet. The toes have a tendency to bend.
The slow release CL was better than immediate release but the benefits to me, if any, did not out weigh the side effects.
I presume your doctor knows about dystonia and Parkinsons. It can be due to an absence of levodopa or too much levodopa (peak dose). It can be very painful. I got it once in the thigh before I began meds. I never want it again! I wonder what your side effects of carb /lev were.
Within three days of taking CL for The first time I developed dyskinesia in my left unaffected leg and it took 12 hours of no medication to stop. Now I just take one tablet and the left leg starts writhing around. If I saw a benefit from taking it I would put up with the leg movement but it makes my tremor worse and does not help with the stiffness and slow movements. It also made me sleepy during the day.
Thank you for asking. Sounds like it really works for you, you are fortunate.
I had to persist and work out the dose, timing and mixture of meds that works for me. And it is a continual readjustment. It is far from easy.
I would be halving the c/l because of sleepiness and dyskinesia and at your stage probably taking less more often like 2- 3 hourly dosing. It is so sad you have such pain. (c/l does help with pain for many people.) As to stiffness and slowness it definitely helps me there. Its far from ideal but I have no choice if I want to function in the world. Do you think the supplements are doing much good?
It may be the placebo effect but I am OK with that. I found that Mannitol helped with the stiffness and slowness of motion plus helped with the constipation. Then I tried HDT and that helped me greatly to be more functional. Before HDT I had 30-40% use of my right dominant hand and after 60-80% use, a huge difference in the quality of life. I have tried many others that have not helped so discontinued.
I am happy that you have found what works for you and are doing well 12 years into this journey.
Shaky-hand, here's is a self-guided imagery meditation that someone taught me years ago. It in no way takes the place of exercise, but I've used it many times to enrich my life and even help me over some rough places. Maybe it can give you a little relief from both your physical pain and your feelings of frustration, anger, and grief.
Sit down somewhere quiet and peaceful with a pencil and paper beside you. Close your eyes and take 3 long, deep, refreshing breaths (don't compare these breaths to what you think someone else might be able to do, but do what you can do). Think of 3 or 4 of the most beautiful times you've ever had out in nature. Remember how you felt at the time - what were you seeing, hearing, smelling, tasting; did you feel any breeze blowing across your face or feel the warmth of the sun on your skin? What was going on around you? Really get in to how your senses responded to these situations. In just a few words, write down a list of each of these experiences.
After you've done the above initially, then once a day, sit in a quiet place, close your eyes, place your fingertips very lightly over your heart area, and start breathing deeply and gently. Choose one of your nature experiences from your list. Spend 15 to 20 minutes remembering every detail of it - the sights, sounds, tastes, smells, and feel. Continue to breath deeply and gently, all the while very lightly touching your heart area with your fingertips as you remember your nature experience.
Lastly, open your eyes, look around the room, and give thanks for having those nature experiences and the memories of them.
(Doing the above meditation could possibly bring a few tears to your eyes - which is OK and is probably healing. But if by chance you start feeling overwhelmed by intense feelings, then stop and ask someone for help.)
Thank You for the guided meditation. I did practice it and found a sense of peace. I normally lie down and perform deep breathing exercises when feeling overwhelmed but I need to practice daily meditation and live in the moment to prevent becoming overwhelmed in the first place.
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