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Think my dh is about to be diagnosed with Parkinsons, advice needed.

(48 Posts)
triplets Wed 08-Oct-14 07:52:09

Is anyone else got Parkinsons or caring for a partner. We have our first appt with a neurologist on the 18th Nov, I am very worried. Thank you.

ScrambledEggAndToast Wed 08-Oct-14 08:22:57

What are his symptoms? Sorry to hear you are going through this. I only have experience of my Grandpa having this and it developed in his mid seventies. It developed fairly slowly at first as the drugs slowed the onset but then the shakes got worse as the drugs had less effect. He had it doubly bad though as he also had Alzheimer's.

Costacoffeeplease Wed 08-Oct-14 08:27:36

My dad has had Parkinson's for almost 20 years, diagnosed in his 50s, and really just affecting his quality of life in the last few years, so it doesn't always mean a rapid deterioration, I'll help with any questions if I can

triplets Wed 08-Oct-14 16:34:39

Thank you both, well first of all abit of history about us. My dh is 72, 11 years older than me. Our trio are only 16, I was almost 46 when they were born after the sudden death of our son Matthew. 6 years ago dh was diagnosed with bowel cancer which spread to his liver and left lung. He has been in remission for just over two years, no chemo since he had 6 months dreadful trial treatment in 2011. He started off with a slight tremor in his left hand just over a year ago, the oncologist wasn`t concerned said it was probably a benign tremor caused by the trauma he had been through. But its got very much worse, also now when he rests his right leg shakes. He has lost weight, lost his appetite and sense of smell. He gets spaced out dizzy feelings and his voice has changed to a much softer hoarse one. He has noticeably slowed down and shuffles when he walks. I am no expert but I believe these are all signs, plus he has bad dreams and restless sleep. The last 20 years apart from the birth of our three amazing children have been a nightmare.

Lilybensmum1 Wed 08-Oct-14 16:43:35

Don't really know what to say you have all been through so much, my heart goes out to you all, can't imagine how you must be feeling, it does sound like Parkinson symptoms (I'm a nurse) I don't want to patronise you but glad your DH is being seen soon, drug treatments seem to work well for most people it's not all doom and gloom (really not trying to patronise!!).

There is lots of support if needed, hope the appointment goes well and you get the answers you need, will be thinking of you.

triplets Wed 08-Oct-14 16:45:08

Oh thank you very kind words x

trulymadlydeeply Wed 08-Oct-14 17:43:37

Hi Triplets,

I know you of old and I'm so sorry that you now have this to deal with on top of everything else. Life could not possibly be described as "fair", could it, when it's so totally arbitrary.

My lovely Dad had Parkinson's - diagnosed in his 50's, like Costa's dad, and he died 2 years ago at the age of 74 from sepsis which I don't think related to Parkinson's. It was your comment about the voice that caught my attention - my Dad didn't have tremors traditionally associated with PD, but his voice became quite high and reedy and hard to hear - I think he had trouble clearing his throat towards the end of his life. He had little movement in one of his arms and his gait was affected as well so he shuffled rather than walked. It is a cruel, cruel disease, but it can be controlled, especially as it's quite late onset for your DH.

Get onto the Parkinson's Disease Society. My Dad had deep brain stimulation - in fact he was featured on the BBC's The Brain Hospital - but I don't think it helped much. It was vicious because he was younger when he was diagnosed but he still lived 20 years with it. Not sure I've been much comfort really. But please PM me if I can help.

Thinking of you ... XX

triplets Wed 08-Oct-14 22:42:31

Hello Truly, I remember you! Thank you for sharing what happened to your Dad, did you feel he still had a reasonable quality of life over the 20 years? I am trying not to google too much, it can get depressing, learnt my lesson over that with the cancer! Just so cruel, esp as he has been in remission from cancer for over two years. The gp said if it isn`t PD its still neurological damage which may have been caused by the chemo. Did your df take any medication, again I have read good and bad about that. I am trying to keep positive, hoping that it may stabilize, not get much worse than it is. I believe there are no actual tests, they go by your symptoms? It seems that every magazine/newspaper has an article on it, he reads them all then questions me! Our dc`s don't know, they can see the tremors but they think that was part of the aftermath of the cancer treatment. Just when I thought life was looking brighter, children will be 17 in Jan, getting more independent etc. Just have to get on with it.................again! x

Costacoffeeplease Wed 08-Oct-14 22:57:55

My dad has been on medication since diagnosis - he also had DBS but his body rejected the materials so it all had to come out again and he then had lesion surgery which has helped a bit. I think the drug treatments can be very useful, especially in the beginning so fingers crossed you might see an improvement. Trouble swallowing and vocal weakness are all symptoms as well as tremors, shuffling gait etc

bumpybecky Wed 08-Oct-14 23:21:19

I'm so sorry to hear this, especially given the back story sad

My Dad has it too. He is 68 now and they think he's had it around 15 years. They've told us there are two types of Parkinsons, my Dad has the type without the tremor. He has several other conditions and balancing the medication has been somewhat problematic. In his case it seems they can either improve motor function or brain function, but not both at once.

I know my Mum found the local Parkinsons support group really helpful. I think she learnt more about medication and help available from other carers than she did from the GP.

triplets Thu 09-Oct-14 08:38:09

Thank you Becky, so sorry your Dad has this cruel illness too. May I ask if your Dads are still able to drive? Dh will be very upset if they take his license away. I don`t drive, did pass my test almost 30 years ago but am such a bag of nerves just feel I can`t. One of my boys wants to start his lessons, the kids are 17 in Jan, that will help. The tremor does not seem to affect his driving, when he holds the wheel it doesn`t happen, its an automatic car too, but the specialist if he does diagnose PD may not agree. I understand you have to inform the DVLA immediately? My nearest local support group is 20 miles away which is a shame, already looked it up! I feel I m thinking "worse case scenario" at this stage, I have always been like that since Matthew died, I find things easier to deal with that way. If it is worse case then I am not so shocked, if its no worse case then its bonus! My poor head though, things go round and round and round. That has just brought back a poem that came into my head after Matthew died, I wrote a lot of poetry in the fist two years.

Round and round and round my head
endless thoughts of you
Round and round and round my head
things we used to do
Round and round and round my head
forever asking why?
Round and round and round my head
and then I start to cry..........

Many friends have said I should write a book..............if only I had the time!!

triplets Thu 09-Oct-14 08:39:21

Costa what is DBS please?

OkyDoke Thu 09-Oct-14 08:43:20

Just a note on the driving, my Grandad was diagnosed at very similar age, and is now 78, he has only given up driving in the last 6 months.

I'm so sorry to hear of your difficulties.

triplets Thu 09-Oct-14 09:02:57

thank you okey that is encouraging smile

Costacoffeeplease Thu 09-Oct-14 09:07:48

It's deep brain stimulation which was mentioned previously, where they insert probes into the brain, connected to a type of pacemaker which is implanted in the chest, it was effective, but his body rejected the material and the wounds never fully healed, so it all had to come out again. It's not a pleasant operation as you have to be awake while the operate so they can make sure everything is in the right place and they don't do any damage. It's also not suitable for everyone, so your husband may not even be offered it

My dad stopped driving several years ago now, maybe about 5 years ago, my mum does all the driving now and I know he found it very hard when he had to stop

bumpybecky Thu 09-Oct-14 16:43:49

No, my Dad hasn't driven in a long time. His reaction time is far too slow for driving, he can't use a motorised wheelchair either for the same reason. Not sure exactly when he stopped. They don't live near me so I'm not involved as much as I probably should be. Dad has lived in a nursing home for almost 18 months now as it was too much for my Mum to care for him (she has medical issues of her own). Sorry to be so depressing.

Have you thought about refresher lessons for yourself? hopefully when your triplets learn it'll be a bit easier smile

BikeRunSki Thu 09-Oct-14 16:49:51

My dad had Parkinson's. I am juggling small children right now, but I'll be back later.

BikeRunSki Thu 09-Oct-14 21:59:44

As I said, Dad was diagnosed when I was 12, and deterioated until he died when I was 23. This was 20 years ago though. I do a bit of fundraisng for [[ www.parkinsons.org.uk/content/support-you Parkinson's UK]] (formerly The Parkinson's Disease Society) and am well aware that ther drug, therapy and surgical options are many, many more and far more successful that they were 20 years ago. The PArkinson's UK website has a section called "Support For You" which may help you.

trulymadlydeeply Fri 10-Oct-14 17:40:22

Hi again Triplets,

My Dad's DBS didn't really help either (like Costa's) - although I suppose we wouldn't have known what state he'd have been in if he hadn't had it. He got an embolism as a result of the surgery and was in a coma for several weeks afterwards - it was a terrible time.

Unfortunately he lost his driving licence really quickly because his reaction time was so slow, and he really resented that! I think one of the side effects (either of the drugs or the disease itself) is depression, but he was incredible - never complained and just kept on keeping on.

He said that he felt trapped behind a mask of a face because his body wouldn't to what he wanted it to, when he wanted it, and it felt as though we lost the essence of the man as the disease progressed - I'm really sorry to be so gloomy. You've had a plateful, haven't you?! As has your DH!

Please do keep in touch and let us know how it goes and how you are.

Much love. XXX

3catsandcounting Fri 10-Oct-14 23:29:46

Triplets, I've seen lots of your posts in the past (mainly in Travel!) and I'm sorry you're facing yet something else.
My mum was diagnosed with PD on her 70th birthday (nice timing doc!!) She lived on her own after losing my Dad to cancer and then nursing my Grandmother for 10 years. The diagnosis came after all this and it has been mentioned in research that stress can be a contributor!
She managed on her own for 9 years until she had a stroke, after which she lived in a local residential home. This, ironically, was the best thing that happened. She was so well looked after, but most importantly her medication was bang on time, every time (something she never managed herself at home.) It changed the whole quality of her life; she was happy, lively, ate like a horse (still tiny), walked into town on her own, no stiffness, no tremor, she enjoyed life again. There were downsides; bad dreams, constipation, and slight clumsiness. She died 2 years ago (another stroke; she always had high BP).
What I'm saying is that its not all doom and gloom; its not something you die from, its something you live with and that medication, once it's fine-tuned, is fantastic, but it's the timing that's crucial, and that invariably requires someone else to manage it.

3catsandcounting Fri 10-Oct-14 23:39:07

When I say 'someone else to manage it', I was meaning you, not a residential home! The meds are usually every 4 hours and my mum was constantly forgetting!
(I'm sure you're well used to timing meds anyway!) smile

triplets Sat 11-Oct-14 21:38:00

Hi 3cats and thank you for posting, really encouraging. Of course we don`t know for sure yet as we haven`t even had the first apt, but somehow I just know.........I have seen such a change in him the last 6 months. I cannot help but feel the 6 months of trial chemo could have triggered something off, pumping toxic chemicals into you body has got to be so damaging. So sorry you lost your Mum, lost mine 2 years ago and miss her so very much at times like this, she would be the first one I would tell, pick up the phone too, she always listened and was so fair and kind....so miss her........

3catsandcounting Sat 11-Oct-14 22:21:30

You're welcome triplets. (I have a DD and DS either side of your 3!) Did you ever sort a holiday out?

triplets Sat 11-Oct-14 22:33:18

Yes we didsmile We went back to Puerto Pollensa in Majorca for 10 days in July. Thinking back now dh wasn`t well there, he had upset tummy and difficulty walking sad It was a nice break though, we used to own an apartment there but sold it after losing Matthew. It felt nice to be back, its very safe and the kids had freedom! That was the view from our apartment, it was heaven........

triplets Sat 11-Oct-14 22:33:41

Yes we didsmile We went back to Puerto Pollensa in Majorca for 10 days in July. Thinking back now dh wasn`t well there, he had upset tummy and difficulty walking sad It was a nice break though, we used to own an apartment there but sold it after losing Matthew. It felt nice to be back, its very safe and the kids had freedom! That was the view from our apartment, it was heaven........

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