Hi, I’ve never posted on here before.
I got diagnosed in 2016 when I was 55.
I have spent most of my time in denial by not talking about it. I think that when I do talk about it people don’t believe me because I look so well. I think that the last comment that I got was that you would never know as I look normal! I didn’t know how to take that.
If I do decide to tell someone how I’m actually feeling I end up listening to their symptoms as they reckon they have the same symptoms as me and it’s just normal aging process and that I should basically just get on with life and have a positive mental attitude.
I’m sorry for the rant on my first post, but I’m exhausted being positive for everyone.
The main reason I have posted on here is that I have been suffering really quite bad with neck and shoulder stiffness for about 8 weeks. It started with awful clicking in my neck. I now feel like my head is constantly falling forwards and I am holding my head up. One of the things that I wasn’t expecting was the change in my swallowing. I just feel awful. My Dr has been great and so has my PD nurse.
Does anyone else suffer with this? How do you cope with it? I am going to an osteopath and doing some exercises from physio. What else can I do?
Hi, I’ve never posted on here before.
welcome to the forum, I am sure you will receive lots of replies and support as the forum community are great at that. Also please do not hesitate to contact our helpline on 0808 800 0303 as they can give advise or put you in touch with your local adviser if appropriate.
Sue - Moderation team
I was diagnosed in August 2017, neck stiffness my main symptom which went on for well over a year, you name it I tried it. I spent a small fortune on Osteopaths, chiropractor, sports massage, accupuncture. Eventually I went to see a neuro surgeon using my company medical insurance. I did have xrays done with the chiropractor which indicated a misaligned vertibrae in my neck. I showed these xrays to the neuro surgeon as I had pictures on my phone. He agreed about the misalignment and suspected stenosis which would explain some other symptoms as my spinal cord would be crushed. MRI came back fine, there was a misalignment but not enough to be causing me problems. He then sent me for a brain scan. That was fine. Next stop the neurologist who diagnosed me with PD which was a huge shock.
Bottom line is nothing worked for neck stiffness for nearly 2 years, it was f******g awful. I could barely move my neck, my head felt too heavy for my body. I couldnt even go out for a family meal as all I wanted to do was lie down. Life was a complete and utter misery. I seemed to be the only person with PD with this symptom so great to meet you
I initially started my PD meds on Requip XL (ropoinirole). But that didnt work. I went to see a neuro physio . Waste of time.
Eventually I went on levadopa (Stalevo), and the stiff neck has gone. Every other bloody symptom is there though, fatigue, depression, anxiety, bit of a dodgy walk etc but the neck is back to norma.
I feel for you, I could have quite easily have topped myself at the time. It was horrendous. Hope you feel a bit better now you know your not on your own with this but Stalevo was my saviour with this. Hope you find a fix.
Sorry to hear you are having such a hard time. I do have neck and shoulder problems but nothing like as bad as you describe so don’t think I can be of much help there I’m afraid but i see you already have a reply which may help even if only to know you’re not on your own - doesn’t solve anything granted but just to find someone in the same boat can legitimise and make real something all the meds struggle to find an answer for.
Re changes in swallowing Parkinson’s UK have some good info https://www.parkinsons.org.uk/information-and-support/eating-swallowing-and-saliva-control
You might also want to ask for a referral to a SALT (speech and language therapist) They can assess exactly what the problem is and ways to manage it. It is a complex area and as you have noticed change I would encourage you to consider this.
Finally and there are no easy answers to this, that is how to manage other people. It is true the person with Parkinson’s or indeed any other life changing condition almost always has to take the lead on one hand because folk don’t know what to do or say and on the other by attempting to be empathetic by likening it to their own experiences. Very frustrating I agree. For me mostly I let it just pass not worth the effort of challenge since it is usually well intentioned. I always challenge if told I am suffering with Parkinson’s because I am the only one that can say that and I don’t consider I suffer I simply have it. I also challenge if someone says I know how you feel. They don’t. What I am trying to say in a very roundabout way is that I see this as something of an occupational hazard that comes with Parkinson’s and is therefore pretty much a given. Over and above that I choose to pick my battles since I’m unlikely to win the war and these two things are my personal most hated. It may not be the answer for you but it works for me and may help you think a bit differently so it doesn’t wind you up so much.
Hope you find a way to a more comfortable neck very soon. Do let us know how you are getting on.
Hi, my husband has Parkinsons or parkinsonism. His symptoms started with stiffness in his shoulders but that has gone, I however have something called Myasthenia Gravis and my symptoms included loosing strength in the muscles in my neck and shoulders to the extent that I could not hold my head up long enough to eat a meal, my chin would end up on my chest and this affected my swallowing and breathing so I can understand how you are feeling. I hope they can sort out your medication to stop the symptoms as it makes a big difference to your quality of life. You have my best wishes.
Hi I have the same problems diagnosed 2 years ago stiffness started this year used to exercise but unable to as stiff also effects bad back I have I put it down to being ridged down left side not nice to have but knowing I m not only one helps sorry .tried tens machine helped a bit might be wort a try sorry if this not useful
I use Ambroxol for my neck & shoulder pain, helps me a lot, may even be slowing progression, check out the press on it in January this year about a recent trial, very hopeful.
HI, I’ve had problems with my neck for about 3 years, I tried doing the exercises that a physio gave me but they didn`t do much good, I tried an inflatable neck cushion that did give some comfort while watching tv. but it wasn’t the answer so I tried battery powered neck massager which is like a tens m/c as it it sends electric pulses into the neck and my neck has been better.
Both were bought online and worth a try.( Neck massager KL- 5830} The inflatable cushion is u shaped, dark brown with a hand pump .
welcome to the forum and thank you for sharing your experience I am sure many will find this really useful.
Sue - moderation team
Hi gbloke i find my shoulder blade mussel just locks and goes very tight, then the pail travels up my neck, i rub in some ibrufren gel , then i place my warm/hot wheat coller around my neck. Somtimes it works Some times not. One more thingh to try with your index finger not sure if borrect but second finger from thumb, any way with this finger press the pain as hard as you can for about a minute and this should give some relief. Another methord to try push your arm around your neck (left hand to right arm or other way round) and try and touch middle of your back, again some times it works some times not.
First of all let me apologise for not responding to any of your posts. I put the post on and then didn’t read any replies. So I thought I’d update you on where I am now.
I have had a really awful year. My posture is absolutely awful. I can’t walk any distance before I physically have to support my head in my hands. I have problems swallowing. I occasionally get breathless. I have problems putting moisturiser on my face and brushing my teeth. If I eat in company I choose what I can eat or know what I can eat without spilling it down me. I feel frustrated and embarrassed.
I have been in contact with PD nurse, physio and SALT. In August I decided to try and get an appointment with a neurologist. After a phone consultation in October and sending him some photos of my posture and neck (neck muscles are really prominent) I had a face to face consultation earlier this week where I had an injection in my neck which is hopefully going to relax the muscles, I say hopefully as it can take up to two weeks before it works. I go back in 3 months and he’s also referring me to Oxford. So that is where I am now.
Thank you for all your help and advice