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Father diagnosed with Parkinson's. Mumsnet can you help me find the way?(8 Posts)
My 75 year old dad has today visited a neurologist and been told he's 99% sure dad has Parkinson's.
He went privately but was told he needs a scan to confirm and to look at the extent of the disease. He's now going to have this on the NHS in 2-3 months time but he's understandably terrified.
I know very little about Parkinson's and I don't know where to start or what to do.
I'm an only child and dad is single so I need to step up and help him.
He has terrible health anxiety at the best of times.
I'm worried that if I google I'll find the worse case scenarios.
I'm hoping maybe someone can offer some advice.
My dad was diagnosed 2 years ago at a similar age to your dad. Prior to diagnosis and medication he was very slow and shaky. Honestly seemed at least 10 years older than he was. Medication has made a huge difference. He still has symptoms but he is mostly back to his old self again. We know that the disease will cause deterioration but for now he is healthy and well
@SlayingDragons thank you so much that's wonderful to know.
I'm concerned about him having to wait so long for his scan to confirm, hence slowing process of getting medication etc..
I might find out the cost of a private scan. I have £5k of rainy day savings which I could use.
It will get worse over time but deterioration is often slow and the medication can often control symptoms well for some years. It's pretty common (I think 1 in 50 of us will get it).
The scan he needs is called a DAT scan. It will be expensive privately.
Parkinson's UK is a good source of information and also runs local support groups.
My Dad was diagnosed 13 years ago when he was in his mid 60s. For the first five years he was ok, just took his medication, played the grandchildren and his lifestyle didn't change at all.
Things went downhill when he stopped exercising so the longer your dad can keep active the better. Diet plays a huge part too, something which I'm always reminding my parents about. If you search Fight Parkinsons on Facebook there's a guy who blogs about keeping his symptoms at bay through diet & exercise. It makes for interesting reading.
I have to say that the NHS is currently failing my dad (not their fault, it's just underfunded). He's supposed to see his consultant or a specialist nurse every six months but has just waited 16 months for his last appointment!
Start asking questions, of the NHS and Parkinson's UK, about what support is available near you. Support / Parkinson nurse specialists are geographically very patchy but are invaluable if you get lucky.
Let this sink in for your dad then let him knowwhat support is available. My MIL had Parkinson's for 21 years, and was adamant she didn't want to go to support groups and they would pigeonhole her as a Parkinson's sufferer, and she didn't want to be framed by that bloody disease. Follow your dad's lead on this.
There are two types of medication. One which slows down the progression of the illness (starts with r I believe). That would be good to start I think, but I don’t know how efficient it is. Progression varies so much from person to person, so not sure what the studies show.
There is a second type of medication which blocks the symptoms and enables the patient to live a relatively normal life. This comes in the form of (possibly less efficient) patches for younger people and Levodopa which are given to older patients. Levodopa has certain side effects (as does the patches), but is supposed to be truly effective. The reason for the patches for younger people is that there are concerns about the long term efficiency of levodopa, which is why early onset Parkinsons (40-s) may be given patches.
There are some medical articles about the effect of food on Parkinson’s, if you google it you should be able to find some overview papers - just make sure there are medical ones and not sensational, newspaper / blog types.
There are studies of in progress about the benefits of probiotics, so it can’t hurt to give your dad some really good ones (probably liquid, to be stored in the fridge.
My mum was diagnosed at 70. She really struggled with the idea and feared the worse (as did I) but with the right medication, which can take a while to fine-tune, and good diet and exercise, she went on to live a relatively good, healthy life.
Living on her own, she did forget to take her medication at times and I would find her 'frozen' and unable to function until I got the tablets down her.
The one thing that made a massive difference later on (she was in her 80s and in a care home following a stroke) was that she got her medication "on time, every time." That was key to her well-being. The effects of Parkinson's were almost unidentifiable.
As PPs have said, look for local support groups, and definitely Parkinson's UK online. Their forums were very helpful.