Brain Tumor / Parkinson's Decease


#1
Hello everyone, I am new to this site, and I am so relieved to find a place to chat about my worries regarding my husband. It all started 12/18 months ago, I seem to remember it not been long after a bout of Shingles? (don’t know if there’s any connection) I noticed my husbands right hand would shake on occasions, when he went to have an asthma exam he mentioned it to the nurse who told him it was probably to do with him using inhalers long term? So we thought no more of it. Over a gradual period of time, I noticed how my husband would walk with a stoop sort of quarter bent, and drag his feet along not lifting them off the ground. The right hand shaking became more frequent, the shaking was faster and more uncontrolled. Then I started noticing how small little jobs like taking the top off the milk for example, it was just to greater task for him to do he would take forever fumbleling, can’t pick things up normally, like if hes in slow motion. I noticed how hard he was finding it to write, he would take so long just to write a couple of words, and his hand writing is that tiny it is difficult to read. Then I had to start cutting the food on his plate especially meat, mushrooms, it seems that any kind of food that needs a little sawing with a knife he just can not do it, if though his right hand has no power at all, he is so slow to get his food to his mouth he would drop it, he started to shy away from eating as much. He falls asleep all the time, he’s always fatiqued, does not want to go out or really do anything, he seems really depressed. I have watched him become so slow at trying to get dressed it takes him forever, and his clothes will be so messy he just can’t sort it out for himself, he would come to me to tidy him up, to thread his belt through his trousers, he just can’t do it without shaking and taking so long he gets so frustrated so I have started to do more and more for him. He has moved into a spare bedroom recently as he just can’t get comfortable in bed, can’t turn over hardly, and now has a pain in his left shoulder at night??? I have begged him to see the Doctor for months, and I have only today got him to realise he is not getting better he is getting worse, and he needs help.
Thank God he has come to his senses. He told me he has been really scared that he has got a Brain Tumor, (his friend passed away a few years ago because of a Brain Tumor) he had started falling for no reason. I have tried to console him that it won’t be a Tumor, that his symptoms are not the same as his friends which were mainly that he kept falling. My husband trips a little sometimes but has never actually fallen. I don’t know what to think, he’s asking me for reassurance that it can be treated, and that its not life threatening, I know I can’t answer these questions because I don’t know what is wrong with him. I read about Parkinson’s of having some of these symptoms, and that is why I joined the site, can anyone please give me their thoughts on this, are the symptoms the same for a Tumor, if its Parkinson’s what quality of life can be expected? What will happen when he sees his Doctor? I am totally at a loss and out of my mind with worry. Thank you for any pointers, any advice is greatly appreciated, sorry this is so long winded, thank you, kind regards Hols x

#2
Hollytree 29

Although I must stress I have no medical qualifications, all of the symptoms you mention fit the picture of Parkinsons. I had most of them over a long time-scale and harboured the idea I had a benign brain tumour growing to which my brain was adjusting every now and again and at other times, because the symptoms were slight, would revert to thinking it was hypochondria and my experience of doctors over another long term condition did not lead me to think the doctor would pay much notice anyway. I can't believe it now but I even turned done taking part in some medical research because it involved a brain scan. However, a car crash brought things to a head so to speak, the symptoms accelerated and there was then no mistaking the tremor, etc.etc. although 30% do not in fact get the tremor. That's nearly 4 years ago now and most people woould not know I had PD.
As your husbands realises several of his symptoms seem clearly neurological and a visit to the doctor should result in an appointment with a specialist pronto, even if your GP does not recognise other symptoms as PD ones which us Parkies would.
Keep us informed of how things go on.

Best wishes

#3
Welcome to the forum, hollytree29 --

First the disclaimer: I'm not a medical professional; I speak only from my own experience as a PD patient and from what I have observed in other patients. Every symptom you mentioned is a possible symptom of PD. Before I saw a doctor and got the medication I needed, I had many of those same problems: trouble cutting my food, an awkward gait, shrinking handwriting, lack of coordination in doing simple tasks, and (the trait that bothered my late husband most) slooooowness.

The sooner your husband sees a doctor, the better. Some or all of the symptoms can be reversed by the right meds for him. In my case, the first drug prescribed was Mirapex (Pramipexole), which lessened some symptoms, eliminated others within the first month. I have had PD 15 years now, and even with the sudden loss of my husband last year, I am still active and leading a normal life. I hike, take Tai Chi classes, work out at my gym, play the piano, go out with friends, travel. Please assure your husband that PD is not a death sentence or even an immediate threat to his daily activities. It is treatable and progresses in increments, allowing us time to adjust to each new stage.

I wish both of you well. Try to be optimistic. Once you're past the awful shock of diagnosis (and I think you're in that stage now), you'll be better able to cope with the situation. Good luck!

#4
my pd first surfaced after shingles - may well be a coincidence.
Does sound very much like pd , lets hope it is - a slowly developing disease shared by millions with lots of research and drugs that alleviate the symptoms.
Could be a lot worse. Whatever he has, he has something, and its not going to go away by not knowing what it is. Knowing is the first step to dealing with it.
The quality of life with pd depends on how well he gets on with the drugs, the rate of progress and attitude. Depending on these things it can be quite reasonable for many years.
cheers

#5
My PD appeared after getting shingles too!!!

I remember it hurt to touch my head at all, soon after that, the twitch started in my elbow.

I take Requip and Azilect and the drugs really do help. They have enabled me to stay in work (with a few adaptations).

PD is not an immediate thing, it takes its time to progress and there are loads of drugs out there to help, not to mention some interesting trials that look very promising.

Caroline

#6
i donyt really hink its a coincidence :wink:

#7
I would like to thank you all for such sound and honest advice, I am so pleased I found this site, everyone is so friendly and obviously had lots of experience with Parkinson's (is it widely refered to as PD) ? I think it seems to much of a coincidence with the Shingles thing? did you get treatment for your Shingles? cause guess what my Husband didn't!!!!!! brushed it under the carpet again, It is so dam frustrating when you care for someone so much, and you can't get them to budge an inch. Well I am putting my foot right down, if there is no doctors appointment made tomorrow I will raise the roof, then I will get blamed for making him worse!!!!
I would like to send a message to J @ Grey Cottage, and say how sorry I am to hear of the sad loss of your Husband last year, and what a brave and amazing person you are. I think you are all very strong and positive people. For some reason I don't know why I am thinking this but you all come across as been younger, (my husband is 65 (I am 54) or is it because you are all so positive? thanks a million will keep you posted kind regards Hols xxx

#8
Thank you so much for offering condolences. The loss of a spouse, of course, changes a person's world. But we had 40 years of felicity, so I cannot complain.

As to the question of age and attitude, I'm 66 and believe that optimism and regular exercise are the two best things we Parkinson's people can provide ourselves. Beyond that, we have to trust to the medical profession. Keep hoping . . .

#9
Dear hollytree29.
I originally joined this forum back in November 2012, for a 'feel' of what was to come. My husband and I are in a similar situation to you. We will hopefully have a diagnosis and treatment starting on 2nd March when we go back to see the neurologist after 3 months of tests. Like you I first noticed things weren't right with my husband 18 months or so ago, he wouldn't listen. Eventually a nurse in a hospital asked how long he had been diagnosed with PD for - when I said he hadn's she said go to the GP and get referred. We did and saw the neurologist in December 2012. Since then my husband has had MRI brain, lung and spinal scans. Blood tests like you wouldn't imagine - even the phlebotomists at Darent Valley Hospital had to look up how much blood etc they needed for some of the tests. He has had a DaTscan and a lumber puncture.
My husband is 74 (always looked and acted much younger) but in last 18 mionths has struggled with handwriting (so small you can't read it) Spacial awaremness (veering to the left while driving and walking) unable to turn over in bed properly, PD gait, stoop, and so very slow in anything he does. Unable to use his knife for 'sawing actions and I have to cut up chops etc. I am 55 years of age and like you have been concerned about how our life will develop. Like so many people say it is important to be active and positive.
I just hope thatmy husband returns I love him to pieces and it breaks my heart that this man who has been mine and our families strength is currently quite happy to sleep all the time and just seems to not have energy or interest in anything. He says its like walking through treacle and his confidence has just gone so even the silliest thing he is frigtened he will fail at.
I read these forums every day, and am sure I will join in more once we have the diagnosis - in the meantime it has been a tremendous help to just see that we are not the only ones going through this. Every single one of the contributors on these forums appear to be so strong - I hope that we can find that strength in th emonths and years to come. Lynne

#10
Hello to hollytree29 plus Mike and Lynne (michaele)--
I remember reading Mike's December post. Now he and his wife are hoping for a treatment plan by March 2? In the U.S. I didn't undergo any testing at all, was diagnosed by clinical observation alone. I sympathize with you in the agony of such a long wait. Your neuro nurse system in the UK sounds efficient, though. I hope once you get started on meds, some of those troublesome symptoms will ease and you'll regain energy and the desire to fight back from day to day. Without my daily doses, I know I wouldn't sound upbeat or optimistic; PD untreated is a heavy weight to drag around. Best wishes for speedy and effective help!

#11
Hi its me again, My husband finally seen his GP today, he has been really bad these last few days, he is so drained and the tremors are consistent and rapid. He can't get comfortable at all, keeps asking for help to get up from chair, goes out of room then comes back sits down, then we do the same thing approx 10/15 minutes later, he has bad neck pain that won't go, i have massaged it given him pain killers, spray heat treatment on it, nothing helps.
Anyway back to the visit with the GP, she said from the symptoms and the bad tremors which she could see for herself, that it is PD ? I thought that was up to a specialist to decide? she has made a referal to a specialist but only because my husband asked if he would need to see one, she said that he did not have to have the referal if he felt he didn't want to? There will be a prescription for him to collect tomorrow morning, she said to take meds and come back in 3 weeks to see how things are. We can expect the appointment with the specialist in 6-8 weeks.
One of my husband's concerns was not been able to drive due to the medication but the GP said he would be fine to drive with these tablets, I think they might be sinemet?? I am not sure (as have not got them yet) I told my husband that he will have to inform the DVLA and his insurance to let them know about the PD, but he thinks that because the GP said its ok to drive then he doesn't need to???
What do you all think?
I don't know if these tablets will help, but we have got to start somewhere. We have a holiday booked for May, I have already paid, and have already taken out the travel insurance only a couple of weeks ago, my husband had not been to see a doctor regards him been unwell prior to this, because at the time he was not this bad, and had no intentions of going to see his GP. I don't know what to do now, like in limbo land, I don't know if he will be ok to travel? or if the insurance Co will refuse to cover him? sorry this is a real blab blab blab, but can someone also please tell me what is advanced PD? I can't get out of my head why the GP says you don't have to see a specailist if you don't want to? trying to keep strong like all you brave souls any advice would be great, love hols x

#12
Hello Hols

I'm so sorry to hear about your husband.

He must inform DVLA that he has Parkinsons. If you check the DVLA website you will see that it is one of the conditions that are notifiable. He should also inform his insurance company.

It is important to see a specialist, although there are others on here who will be able to give you more information on that score. My husband was diagnosed by our GP but she immediately referred him to a neurologist for confirmation of the diagnosis and for appropriate medication to be prescribed. Ask your GP if you have a Parkinsons' nurse in your area and if you do have one, ask to be referred straight away. In our area this can be done independently of referral to a consultant. In my experience Parkinsons' nurses are more accessible than consultants and are very informed on medication. They can also help with access to other services like physio.

Very best wishes to you and your husband.

:smile:
Worrals

#13
Me again. Sorry, I just re-read your post and see that you are worried about your holiday as well. I am no insurance expert but I think that probably, because your husband had symptoms at the time you took out the insurance it would be classed as a pre-existing condition and he would not be covered. In any case you have to tell the insurance company about any changes in health which would mean that you have to tell them about the PD diagnosis. You may be able to get cover if you pay an increased premium but it is important to tell them everything.

You may still get your holiday if the medication is sorted. I flew to the Caribbean with my husband when he had been diagnosed three years and there are others on here who have travelled much more extensively.

Worrals
X

#14
Hi and thank you so much for your advice, I can't thank you enough, I will contact the Dvla,and the car insurance it is a must. I can't beleive how helpful the members on this site have been to me. I am thinking all sorts at the moment, its the not knowing, if his GP says my husband has PD, yet he's now waiting to see a neurologist, then he hasn't really been diagnosed has he? now I am thinking untill he sees the specialist he could have something worse then parkinsons, I mean can you get these same symptoms for Moto nuerone decease? sorry I know you won't know that I am just worried sick, one minute you think things are going to get a little better then your mind starts working overtime and thinking all sorts just hope hes ok, and its nothing worse. Thanks a million love hols x

#15
Hi, again, hollytree29 --
I'm reading your posts and feeling so helpless, because I'm in the U.S. and know nothing of the driving laws, insurance regulations, etc., in the UK. But please know that there are lots of us following your husband's case, keeping you in our thoughts, and hoping things will be resolved for you soon. Best of luck!

#16
Dear Hols

My heart goes out to you and I am sending you big virtual hugs.

I am not medically qualified and can only say that my husband had all the symptoms you have described. If the Sinemet improves his condition that is an indication that it is Parkinson's.

I suggest that you ring the Helpline on this site - telephone number top left hand side of the page. They are extremely helpful and very knowledgable.

As J of Grey Cottage has said you are in our thoughts and we all hope that your worries can soon be allayed.

You can always come on here and let off steam. There will always be someone to listen.

Love
Worrals

#17
Once you have got on and done all the things that have to be done you will feel less worried.. When you inform the DVLA you will find they will check with your doctor and consultant,when you see him/her that your husband is safe to drive. As your doctor is quite happy about it there should be no problem. Meanwhile he can drive but he must tell them.As far as your holiday insurance is concerned I can see no problem as long as you inform the insurance company now. My husband had told his insurance company that he had Essential Tremor as this is what the G P wrongly diagnosed.(We have yearly travel insurance) When he was told by the consultant two days before going on a tour of China it was Parkinson's webphoned immediately and they just upped the premium.(In future shop around for insurance as the extra they add varies a lot) if you do not tell them and he trips over as we all can do they will blame the Parkinson's so do phone. If he feels well enough I can see no reason not to enjoy a holiday. Do get him to see a consultant as often a combination of drugs works best and an ordinary GP,however good, does not have that expertise.
In the eight years since being diagnosed my husband has travelled the world, long and short haul. He has been lucky as Parkinson's varies from person to person but your husband might be just as lucky.
When my husband was first diagnosed I imagined that our world was collapsing I thought that things he enjoyed doing as well as those we did together would come to an end within a very short time. This has proved NOT to be the case. Alriight there are some things he cannot do quite as well but our life is still fulfilling and enjoyable nine years since diagnosis,eleven years since the tremor showed itself.

#18
All that sounds just like my husband when he first went to see the Parkinsons consultant . Very restless , painful neck shoulder which he suffer ended for many years with .

Although he isn't brilliant I must say since starting the Sinemet he also uses the Rotigotine Patch The painful neck and restlessness has eased greatly .

I do home the same thing happens in your case .

My husband drove for a few years after his diagnosis but gave up eventually which has been a big loss for both of us . We have got use to it now I do a lot of my shopping on line and use taxis when needed . The most important thing thing is to accept that it is the right thing to do is if and when you are not safe to continue driving . Not the easiest or nice thing to have to do but what is the options !!!!!!!!!!!

#19
Hi,

I have seen several posts here in the past 3/4 years from drivers and not one, including myself, has had their premium increased because of Parkinsons. They seem to tend to the view that if the DVLC think you are safe then that's good enough for them. So I would advise anyone having their premium increased to have it double-checked. The only thing that does happen is that the DVLC examine your case referring to the consultant and you end up with a three year renewal basis licence (if you are not already past 70 and on the three year renewal anyway). It can take 2/3 months for them to deal with your case during which time if you need one, the DVLC can provide a letter saying that you are still entitled to drive. They don't go out of their way to tell you this causing unneceesary worry especially for those depending on their licence for their job.

#20
Hi Holly and welcome, I'm glad your hubby has seen his GP and you are on the road to getting proper care and treatment. With the meds I'm sure his physical symptoms will improve and he'll be more comfortable :)