Does HD start to effect breathing as it develops? My brother has stated wheezing a little. It got worse yesterday for a moment so the doctor has prescribed an inhaler incase it happens again.

I also have many breathing problems and allergies.
I just thought it was more from smoking and my environment/food than HD.
I would also like to know if hd makes it worse.
Laura

Yes, people with hd have a lot of breathing problems, first because the muscles for breathing have a lot of trouble keeping up with coordination, and second, from aspiration.

thanks for the response! I had a feeling it was connected to the muscles and coordination

I go to an respiratory clinic at the local hospital for asthma. I am not the only patient with HD there. HD causes damage to the lungs which can be shown on the spirometer. This nurse is excellent but I doubt you?ll find even doctors who know that much. People with HD compress their lungs which is why their voices are softer. I have this problem but playing a tenor recorder helps with lung volume.
Ventolin which is the most common breathing aid makes much more movement.
Dr. Dubinski, an HD specialist told me that green ventolin or astrovent is absolutely forbidden for someone with HD. Green ventolin is what you get in the ER, and when I was given it I shook so badly i fell out of bed. I felt like I had shimmers going through my body, I had been left in a small room all by myself . This is why I wrote Dr. Dubinski.
After the fact with astrovent on my list of allergies, I can think of 6 ER doctors who sneered at this information.

I have a very strange thing happen when I lie down. Puffs of air suddenly puff out of my mouth for no reason that I can see. I think it is a involuntary spasm in my lungs or something.

I don't lie down because I choke.

Dusty Barb and Alice,
Thanks for all of the great info. You have sure given me alot to think about. I thought i had copd from all of the commercials that I see.
I also have a very low voice.
Dusty you poor thing. thank god you wrote to that docter.
How do you sleep at nite?
Laura

Laura, if you think you could have copd, you definitely need to get that checked out, that can be to do with hd, or completely separate, but should definitely be checked out.

ok thanks Barb.

Sears cat used to have foam wedges which came with removable corduroy covers for $15. I boughta bed wedge for $89 at the pharmacy which has no washable cover so it is swaddled with one flat sheet. My husband has COPD and I decided he could have the wedge because my neck is sore often. I go through pillows from head banging too. My latest pillow is one of those funny pillows for side sleepers and I raise it one one pillow.
On bad nights I sleep sitting up on my love seat or in the IKEA back chair.
There is quite big market for those bed wedges because people having plastic surgery sleep on them for several months.

Wow, you are too smart Dusty



Edited 1 time(s). Last edit at 02/04/2011 12:35AM by Barb.

I agree with Barb! I am very glad you are here to help on the forum!
Laura

Dusty has Huntington?s Disease.
Dusty has lost weight due to Huntington?s Disease.
YEAR WEIGHT % weight loss Comments
1989 185 Early HD has depression, apathy, anxiety and loss of some skills. Foot problems driving, sleeplessness, Early HD
1996 185 Cannot write, has depression, apathy, anxiety and loss of some skills. Foot problems driving, sleeplessness, Moving to mid stage
2000 195 has depression, apathy, anxiety and loss of some skills. Foot problems driving, sleeplessness, Mid stage has more movement, and loss of skills.
2001 185 Fall pneumonia Celexa
2002 150 19% March pneumonia. stops driving Celexa ,Lorezepan
2003 150 19% Celexa ,Lorezepan
2004 150 19% Celexa ,Lorezepan
2005 150 19% Celexa ,Lorezepan
2006 150 19% Celexa ,Lorezepan
2007 150 19% Celexa ,Lorezepan
2008 150 19% Celexa ,Lorezepan
2009 160 13% Paroxetine ,Clonazepam
2010 160 13% Paroxetine, Clonazepam
2011 160 13% Paroxetine ,Clonazepam

Thickening agent.
Dusty requires thickening agent as well as Ensure Plus.
Dustyy has chorea in her tongue.
She has a very dry mouth for which she uses Biotene products. She also carries Moistur on the recommendation of the CCAC speech pathologists and the speech pathologist at St. Joes in Guelph. Water does nothing for dry mouths.Dusty is thirsty and hungry all the time.
Dusty has ground her teeth for 20 years and now has partial dentures. The uppers fall out.
She is allergic to petrolatum in denture glue
Dusty usually has eye and nasal allergies. Frequent colds, bronchitis, lung infections. Swallowing problems are aggravated by a blocked nose.
Dusty has cold air asthma. Anxiety from having HD and asthma interplay badly.Dusty carries an anti anxiety medication, clonazepam on the prescription of Dr. Chris Hyson , her neurologist, and takes an anti depressant, Paroxetine ,also prescribed by Dr. Hyson . She is prescribed ventolin by me.Dusty is unable to breath air of 5 celsius or colder .



Edited 2 time(s). Last edit at 02/04/2011 01:02PM by dustyblues.

Dusty , thank you . db

Dusty has ben writing this for weeks and weeks. I put it on a disc to put on the docs heading.The doc thinks I don't use thickening agents, but I don't use chemical anythings, so putting sugar and 23 cremes in coffee is thickening. Butter on vegs . The new special diet only goes to people who need thickeners. Quite funny because the first comment from human rights was that dysphagia was underfunded.
The case conference is on Feb 17 when we will find out if HD has to go to trial. I hope it does.

There are thickening agents which is just corn starch or other starches.. no chemicals.

My brother had a blood test and it looks like the breathing problem came from an excess of potassium in the body. I looked it up and high protein shakes can be high in potassium, so it might have been the shakes he was drinking.

Dusty - what kind of IKEA back chair do you have?

[www.ikea.com]

Even my brother in law who has scoliosis loves this chair. Ikea furniture works well because you wash the covers so less chemicals. My daughter got a surprise package at ikea clearance which had a huge coffee table, two bookcases and one ponang chair for $200.She has a fractured disc in her thoracic area.

you don't slip out of the chair? It's difficult for him to sit up for a period of time, he'll start slouching forward and slide off.