Hello this is my first ever forum post
Am feeling a little lost and frustrated and figured someone here may have been in the same situation
My mum was diagnosed with Parkinsonās over 20 years ago
Now in her late 60ās after many years of reasonably mild symptoms things have declined considerably and quickly
We have reached out to her consultant and Parkinsonās team who disappointedly have done very little and seem happy to let us wait till mumās yearly follow up
GP although willing to see Mum has said not confident in interfering with Parkinsonās team plan
I canāt possibly cover all the new issues in one post but my main concerns are
She has now started falling
She is showing signs of ?dementia
She is suffering with persistent urinary symptoms
She is in a constant state of what I can only describe as a slump
She has gone from being able to dress etc herself to needing round the clock care
She has stopped all her social activities including her volunteer roles and Parkinsonās support group as so difficult to leave the house
She has overwhelming anxiety about everything
We have asked for a face to face appointment to see if medication could be reviewed or to see if she needs seeing by another team but are just not getting anywhere
The OT appointments have been the most helpful but even they agreed she needed to be seen by her Parkinsonās team as such a dramatic change since seen in April
HelloNpauley15 and welcome to the forum
Iām sorry to hear things have gone so awry for your mother no doubt causing s lot of distress and anxiety for you all. Your mother, I would agree, needs review by her medical team as a matter of some urgency. May I suggest thee following.
You seem to have a sympathetic GP. Most GPs are not very expert in Parkinsonās care and prefer to leave much of the management to the specialist team, but might he be prepared to write/contact them to suggest your mother needs review due to the dramatic changes.
Ring her consultantās secretary and tell her/him exactly what youāve written here and ask her to bring it to his/her attention. Follow it up with a confirmatory email requesting he/she informs you of the outcome. If not offered a review keep the phone calls/emails going until you get a review. You shouldnāt have to but sometimes you need to stand your ground and shout (figuratively speaking) long and loud until you are heard.
Do the same to the Parkinsonās Nurse.
Ring the helpdesk at Parkinsonās UK 0808 800 0303 to see what they advise.
Make sure you let them know exactly how much these changes are impacting not only your mother but you and the family and that you are all struggling to cope.
Finally look after yourself - you are doing the right thing by seeking help from your motherās medical team all I am suggesting is to make them listen. You mentioned she has annual review. Under NICE guidelines she should be having 6 monthly reviews which is what I have. That would make her next appointment due in Ocober, Personally I think thatās too long but it may be something you want to point out to whoever you speak to/contact.
I hope this helps. Let us know how you get on
Tot
Hello and wow, this is oddly similar to how my dad has been since April 2024. Have you tried getting a blood test. My dads showed he had become quite badly vitamin b12 deficient. B12 deficiency can mimic alot of parkinsons symptoms. He started a course of b12 injections end of April, and whilst its maybe helped slightly, hes still not great. I assume his decline has been a combo of the b12 and a progression of his parkinsons. He actually has a appt with his parkinsons nurse in a week (if i can get him there at 9.00am!). First face to face appt in 2 years. It will be interesting to know what she suggests but im not holding out for much. I sympathise with you, the falls, nightime urinary issues its really hard to deal with. Plus he suddenly has no clue most of the time what to do with his tablets. Could well be Pd dementia starting to set in but just guessing which ill obvs ask the nurse about as well.
The guidelines actually say review should be every 6-12 months but most who are reviewed regularly as I am see their consultant every 12 months and the Parkinsonās Nurse every 12 months with these appointments being 6 months apart but - and itās a big but - I have always been able to contact them between these two apppointments if I needed too and on the odd occasion I have had to do this they have always responded and the issue sorted out.
Your Mum may have been coping for many years on annual assessments but this is no longer the case and the changes you have outlined are serious and big changes. To be honest in your shoes I would start keeping a quite detailed log if you can noting any falls and the cicumstances, precisely what help she needs day to day, how her overwhelming anxiety presents, the fact that she has made herself more less housebound noting your attempts to get her out etc. In fact anything that gives hard evidence re her recent rapid deterioration not forgetting the strain this is causing to you all. I would also suggest you be almost brutally honest, tell it like it is and make it plain you want an urgent review. As I said, you shouldnāt have to do this, it shouldnāt be that hard but the reality is sometimes you have to jump up and down until someone hears you.
Tot
Just an update we saw my dads nurse this morning. Went partly as i expected. Cant do anything about falls, balance etc, excessive tiredness during day just part and parcel of the disease. However we have had some changes made to his medication. About 1 month ago my dad started to take a small dose of madopar as a dissolvable tablet in the mornings along with his other pd tablets. We feel it has made a slight postive difference so she has increased the dosage and also given him the okay to take one in the early evening when he usually goes bad again. I also mentioned his sudden inability to take his tablets correctly and a few other little things that make me feel pd dementia maybe rearing its head. She has made a referral for a diagnosis. Oh and the new parkinsons drug, name escapes me, been on the tv alot, its a very slow rollout but she thinks it will be available in cumbria before the end of year. So i would really try and push for an appointment but the state of the service in cumbria and i expect elsewhere in the country is not good. The only pd nurse in south cumbria retired last year, the replacment came in and has been on long term sick for 6 months, so theyve coaxed the old pd nurse out of retirement temporarily. There is no parkinsons consultant. A new one came in january, lasted 2 weeks then resigned because of the state of what he walked into. Says it all.
this is my first ever forum post 