Parkinson's

[Runaround50]

Didn't know where to put this, so apologies if in the wrong section.

Partner ( mid 60's) is showing classic symptoms of Parkinson's. He was referred to a neurologist back in October but still waiting for an appointment. I've suggested he go private now.

Anyone else have any knowledge of this condition and how things pan out. We have two teens and I'm only early fifties, so feeling a bit worried.

Thanks

My husband had PD. He made the diagnosis himself as he was a GP.

You need a proper diagnosis first. I would go private if I were you - my brother, who also has PD, did this then transferred to NHS for ongoing treatment. The sooner the diagnosis is established, the sooner treatment can be started.

PD affects people very differently. My brother has responded well to the meds - although, as always, there is a bit of jiggling around needed to start with to get the dose right. My OH did not respond so well and we had to deal with lots of side effects and lots of changes of meds. You need to be aware that the meds can cause strange side effects and that you need to feed these back so the right mix can be achieved.

I would recommend Parkinsons UK - www.parkinsons.org.uk - they have masses of information, a phone line and supportive help. They sometimes have local groups as well.

Locally we had a brilliant Parkinsons nurse, who was always at the end of a phone or an email, and who was able to change the meds without going back to the doctors. It was such a wonderful support to us all. When the diagnosis is established make sure you ask for this contact.

There are neuro-physios who can help with exercises to keep patients active; and the whole battalion of OTs who deal with equipment for the home etc. Take everything you can so as to make life easier.

As you might have already worked out my OH died - but not of PD itself - he died because, 13 years after diagnosis, he fell and fractured his hip and this proved to be more than his body could cope with. He lived for nearly a year after this but his care needs were very high during that time. People do not die of PD, they die with it.

It is very important to avoid falls as people with PD find it harder to recover from these, especially if a fracture is involved, so do make use of the falls prevention clinic - most hospitals have these.

Keeping mentally stimulated and interested on life is also very important. Sadly my OH lost interest and motivation, so this was challenging; but my brother is determined to wring everything possible out of life while he can and plays golf, goes to the theatre and generally stays plugged in to life.

If I can be of any help please contact me.

A private consultant should be able to refer you back to the NHS. Just be aware that some of the meds have mental side effects such as making you more reckless / being prone to addiction / forgetful. My grandfather used to get confused and forget where he was going or where he was. Meds changed and he was fine for a bit and then became addicted to cigarettes (from previously being a non-smoker!). Soas soon as you find out I’d reccommend you takeover running the finances and get Power of Attorney.

It's a long term disease. My MIL was diagnosed in her mid-50s and lived with it for over 20 years. The support from Parkinson's nurses is very regional and patchy, so I hope they cover your area. Follow your husband's lead on how he wants to handle this. Some pople want to be in support groups, others prefer not to be defined by the disease and avoid attending such groups. They can also be a reminder of how things are going to progress for you.

My husband is a bit younger and also waiting for a diagnosis.

As someone who knew/knows very little about the disease esp in younger folk, I found the Movers and Shakers podcast to be really informative and heartening.

Members of the podcasting group include Jeremy Clarkson and Rory Cellan-Jones.

Much more helpful info in there than I've found online.

The most challenging part for me is not knowing how it will progress, but that's the nature of the disease.

My friend was diagnosed in his late 40’s I won’t state the obvious about the symptoms and the impact of it but he has good care from nhs Parkinson’s nurse and some truly amazing medication

As someone who knew/knows very little about the disease esp in younger folk, I found the Movers and Shakers podcast to be really informative and heartening.

Members of the podcasting group include Jeremy Clarkson and Rory Cellan-Jones

I second the recommendations for Parkinson's UK and this podcast.

Get the diagnosis even if you have to go privately to kickstart it.

I just wanted to say thankyou to all
for sharing your experiences and knowledge with me, it's going to be so helpful going forward.

We are away at present but the symptoms are very apparent to me.

We will certainly be trying to to get a private consultation and take it form there.

Just feel a bit down with it all as I've got some gynae issues and recently diagnosed with a Horners eye and now DP with this ( I'm almost certain of).

Onward and upwards as they say.
Thanks again all 🙂

@ParkinsonsQ do you mind me asking how old your husband is? What were his initial symptoms?

Absolutely fine if you don't want to share.

Not a problem.

He's late 40s and has issues with one of his arms: pain, fatigue, it feels cold to him but not too touch and the arm doesn't swing any more.

All intermittent apart from the arm swing.

Pretty typical, I fear.

Thanks.
I think this is the case also for DP.
Along with balance issues, slow movements and difficult walking straight.

Oh it's getting to me today, particularly as we are away.

I've just reread your post and see you've been waiting to see someone since October. I'd definitely try and go private if you can.

The uncertainty is really tough - though from listening to the Movers and Shakers podcast there's not much certainty after a diagnosis either!

But at least you'd know, and as one of the PP said the doctors might start your husband on meds, which do work really well for some people. Hopefully your husband will be one of those.

It must be tough with your diagnosis as well

Please remember that PD is a progressive disease, but only very slowly progressive. If your DP does have it, he has lots of enjoyable life ahead of him. It was a good 10 years before my OH experienced any significant deterioration in his quality of life, and treatments are progressing all the time. There are even surgical options which were not an option for my OH because of other illnesses he had as well. He was unlucky that he had a fall, but up to that point he was ticking along with only fairly minor problems, e.g. finding it hard to dress and undress because if stiffness.
I am sorry that you too have health problems to contend with.
An early diagnosis is what is needed. It is a shame that the NHS is so slow.

@Mischance and everyone
Again, thanks once again, I really appreciate you sharing your experiences.

We have decided that going private, is the way forward, having been waiting since October. DP did say he was going to ring the GP again and ask him to expedite the referral as symptoms are more apparent than ten months ago, but it just takes so long, that private is the only option I think now.

Hopefully once we get a diagnosis, we will know what we are dealing with and how to manage it.

I do worry about the balance thing, as it just looks like he is about to fall at any minute!

I know it feels hard to contemplate when he is used to being well, but use of a stick helps with balance and preventing falling. I hope he gets an appointment soon.

Thanks @Mischance 🙂

@Runaround50 Getting a diagnosis will help you with access to so many things like

• an OT assessment
• a plan for maintaining muscle mass and balance
• access to support groups (a wealth of practical tips and support from those who know what it's like to live with the condition and lots of them have very active sports/dance activities that not only serve a social function but help to maintain balance/coordination etc. and may preserve people's own dopamine-generating sensitivity/ability)
• eligibility for benefits and any adaptations your DP might need.

It will cost you now but may be a gateway to faster access to other services that will recoup that loss.

If your DP isn't ready for a standard walking cane, there are decent telescopic walking poles in addition to the non-collapsible ones. This is just an example.

https://alpinloacker.com/en/

When we look back my dad probably had symptoms about 7 years before he was diagnosed. Once diagnosed it was, sadly, only another 3 years, but that was because he developed Lewy bodies dementia with it and it quite quickly progressed.

I used to work as a Physio and I hate this disease with a passion. There are lots of resources out there and I second the referal to the UK Parkinsons Society that Mischance posted above. They are truely excellent and I have used them many times. They produce an exercise booklet, or at least they used too, that is really good. I am sure that they still would have something similiar, it was just excellent. I have also refered people to care companies that specialise in Parkinson's as they ofter have carers who will do the exercises with your partner. I can personally recommend https://www.ip-live-in-care.co.uk/ but I appreciate that you are not at this stage, I am just posting it here in case it is useful for anyone else searching the forums. I sincerly wish you the very best, I can reassure you that there will be good times ahead still but sadly bad ones too. Make sure you look after yourself. If you need any advice on exercises then pease PM me.

If you do end up getting a private consultant I would highly recommend the consultants at the national neurology hospital. They are brilliant.

Jeremy Paxman

Thank you @MNetcurtains - Yes, definitely Paxman. That's when the edit button would've been useful!