My 40yr husband has Parkinsons

[clare7482]

Hi, My husband is currently waiting for a diagnosis, we believe he has Parkinsons Disease. Our doctor has said it seems like a junior form of the disease that is very rare, but it is turning out to be really hard to get a definite diagnosis and find out if we can get him any medication. I am 28, and we have a 16 month old daughter, I am desperate to find out if there is any hope to slow down his degeneration. He is unable to work because of this, and I can not work either because I can't leave my little girl with him on his own as he "glazes over" sometimes.

He is himself a lot of the time, but has short term memory loss, and can't go out on his own as he gets easily lost. He also has a shake in his right arm that is progressivly getting worse; I just wondered if anybody had any little glints of light that they could share with me from their experience so I can try and get a better idea of what is out there for Parkinsons sufferers. It's now been nearly 7 months since his first doctors visit regarding this and I'm ready to kick some doc's bums!

Thanks, Clare

[Helen33]

Dear Clare,

Welcome to Talking Point. I am so sorry to hear that your husband may have Parkinsons Disease. I would suggest that you begin to keep a journal of all the little things that you notice are different with your husband as this can help a lot with diagnosis. It is worth noting even those little things that you think no one would be interested in

I am unfamiliar with the medication side of things even though my brother-in-law had Parkinsons Disease. If you click on the Factsheets (above right hand side of the screen) and then type in Parkinsons Disease you will find some information and also a suggestion to contact the Parkinsons Disease Society.

I do hope that you find Talking Point to be a support to you Clare.

Love

[Sandy]

Hi Clare,

Welcome to Talking Point (TP).

I'm sorry that you have so much to deal with at such a young age.

TP is part of the Alzheimer's Society and so most of our members are drawn here by experiences with dementia.

Some members will have experience with something called Lewy Body dementia (LBD) which has some aspects of Parkinson's disease(PD). Here is the factsheet on LBD:

http://www.alzheimers.org.uk/factsheet/403

Regardless of the specific diagnosis, many members will be able to relate to your concerns, both for your husband and also for yourself and your daughter.

If you want to get more information about PD, can I also suggest the Parkinson's UK website:

http://www.parkinsons.org.uk/

and they also have a forum:

http://www.parkinsons.org.uk/pdsforum/default.aspx

Can never have too many sources of support

Take care,

[clare7482]

Thank you so much for the info - you are quite right, you can never have too much information or support!

I will now go and have a good read, so again, many thanks all

[Grannie G]

Your post filled me with sadness. I am so sorry you have this in yours and your husband`s life at such young ages.

I do hope you can get enough support and some practical help. There will be support here on TP but you need hands on help too. You must ask. You must let all disciplines know what you need. They will be slow in offering unless they know.

[BeckyJan]

Hello Clare and welcome from me too.

Like Grannie G I feel sad that you have this to cope with in your young lives. Though it is hard somehow I feel your young daughter will bring you much comfort in the years to come.

I hope the links are helpful and I also urge you to seek out and demand support.

[nicoise]

Hi Clare7482

So sorry to read that your husband has this diagnosis at such a young age - very tough for him, you and all your family.

One thing I have learned, as with dementia, is that there is no one way that each person has difficulties, nor set treatment that suits everybody, nor only one way to approach it. And unfortunately, that it is very much better to be as active as you can in seeking help - pushing for help rather than waiting for it.

GPs tend to be the first port of call, but don't have very much in-depth knowledge, and are usually loathe to interfere with a consultant's decisions. If you are lucky enough to have a Parkinson's Nurse Specialist that will be a great help. Also pursuing physiotherapy and occupational therapy will be a great help to maintaining your husbands physical abilities.

The problem with the medications is that the patient swallows a tablet, it has to be digested and passed to the brain, then the brain has to send the message to nerves/muscles for movement to happen. It is a very clunky process, and obviously differs in effectiveness from one person to another. Finding medications that suit, the right dosage and timing of doses to provide acceptable levels of ability of movement throughout the day is a hit and miss process.

It sounds as though you have the right attitude - kicking butt will be necessary! Being your husband's advocate will also be a great support to him as much as physical help. Parkinson's affects the patient as much psychologically (anxiety, panic attacks, depression etc) as it does physiologically. Getting some support for yourself too, and doing things that you enjoy, are also very important.

Please PM me if you'd like a bit more in-depth information than might be suitable here.

Best wishes and good luck

[ella24]

Hiya

my dad was diagnosed with PD at 63 (6 years ago), just as he was retiring, which aparently is still quite young. As a family, both my mum and dad's families had PD on each side, and my aunt (mum's sister) was diagnosed recently too.

Dad is still able to be fairly active - He is also still able to drive (but chooses not to, as my mum drives) The meds have made a lot of difference - and things have not really progressed too badly at all in 6 years, (especially when you consider general ageing process too) but Dad also knows that symptoms are worse if he himself is stressed or anxious, so he tries to manage that too. There are loads of practical work-arounds, and you soon find they become second nature (as a family we hardly notice it because it becomes second nature) - even simple things like having 2 single beds/mattresses because Dad shakes in the night and wakes mum if they are on the same mattress, having speaker telephones, all sorts of things.

The Parkinson's nurses (if you can get one - you may need to fight) are absolutely fantastic. My grandparents had one (different area), and dad has one down here. You usually get one via the consultant neuro. They will come to your house (often as an inbetween appt between consultant appts) , are usually contactable by phone in office hours (or messages), and often come up with really good tips on meds, and more practical ways around things.

My nieces have grown up with Dad's PD, and are very comfortable with the shakes etc - if he shakes badly they now hold his hand and talk to him (it's moving to see)

PLease PM me if you need any info or anything at all,

take care of yourself too - you need to make sure you keep well

e

[clare7482]

Thank you all so much for your info, it is nice to know there are other people who understand. My husband was diagnosed with PD yesterday, so now we just have to wait for another brain scan to determine how he will be medicated. Hopefully it will mean now that we can get additional help for him, and also try and claim for DLA, which would help us greatly.

I have briefly spoken to his neuro consultant about the possibility of it being hereditary. He said that it was not as simple as just being a recessive gene from either parent; it was not particularly known either way. I would like another child, but obviously am afraid of passing this down.

Has anyone heard anything about stem cell treatment for PD? I know that is it not legal in this country, but I know there have been successes in other countries. I am hoping this could be a possibility, if we could raise enough money to go abroad, but that it a bit in the future yet really.

[Sandy]

Hi Clare,

You might also want to look at the Michael J. Fox Foundation website:

http://www.michaeljfox.org/index.cfm

Most people know him as the star of the Back to the Future films, but he was also dianosed with PD at the age of 30 and has since become one of the most effective PD campaigners on the planet.

Take care,

[nicoise]

Hi Clare7482

Does your husband's family ancestry reveal a repetition of Parkinson's in its history? I think the research into the issue of hereditary components is still unclear, much as it is with dementia. The following link takes you to an article about one of the founders of Google, and some research he is funding - at least it seems there is a lot of money being thrown at it:

http://www.telegraph.co.uk/technolog...arkinsons.html

Your husband's consultant is the best place to start finding out about the possibility of some of the newer treatments, I guess.

Best wishes,

[clare7482]

I had heard about Michael J Fox, but hadn't yet looked at his site, so thanks for that

As far as I am aware, there are no other family members on either side that have PD. We have been told that it could possibly be Lewi Bodies. I have to day that the Leicester General Hospital was excellent with helping us after mu husbands first consultant at Burton pretty much just dismissed him as being depressed.